My Crohn's Disease

Epic Portable Toilet

2011-10-10T12:41:00.000-05:00

As many of you have probably guessed I’m very open about my disease and the effects it has on my body. So open, in fact, that many of my friends feel comfortable enough in sharing their own bathroom moments with me. Others will think about me when they come upon bathroom themed situations they think I will enjoy hearing about. Some will even take pictures of the unusual bathrooms they find and send them to me. The pictures here are an example of such a situation. They were taken at a very high society political event and show the luxury portable toilets that were brought in for those in attendance. Personally, I never even knew such things existed. Just seeing the large note on the side of the toilet urging those that use it to flush leaves my jaw hanging and then asking where does it go? The size is impressive as well. If one of these were brought to a Civil War reenactment women would never have to worry about going inside one with a hoop dress on -- always a troubling issue with the standard portable toilets -- and I wouldn’t have to worry about spending hours sitting next to a disgusting pee splattered urinal sink like contraption. The mirror is a nice touch as well. I’ve never seen one so big inside a portable toilet before. I’m guessing given the attire of the people at this high class event such a mirror is needed because the last thing you want to do is step back out of the bathroom disheveled, which, when using a standard portable toilet is almost always a given.

Now, just looking at the first picture one gets a sense of how epic this portable toilet is and probably wouldn’t imagine that there would be even more things within, but there is. With a quick turn to the left -- that’s right, how often can you actually turn to the right or left in a standard portable toilet -- we can now see the amazing hand washing setup the luxury portable toilet has. As if that isn’t enough, however, they have also added flowers. The toilet seat cleaner they have behind the toilet in a nice touch as well. Such a thing would come in handy at reenactments since every now and then people leave a bit on the seat itself when struggling to use it in the middle of the night. Perhaps the most striking thing about this portable toilet is that it wasn’t unique according to my friend. All of them were like this and they had enough so that one wouldn’t have to worry about waiting, unless of course there was some catastrophic problem with the food that sent everyone at the event running for them all at once.

Anyone else ever have the privilege of getting to use a portable toilet like this? If so, please do tell us about it, and, if you have pictures, shoot them over to me in an email so I can share them with the world (of the luxury toilet, not you using it).

Ever Have to Use a Clogged Toilet in Public?

2011-10-08T13:40:00.000-05:00

This is a situation I haven’t yet talked about on this webpage despite the fact that it has happened to me before. It was back when I was a manager at a restaurant, one that I hated working for because the owners kept cutting our staff down in hopes that it would increase profits even though they already were making profits higher than most restaurants in the area, which in turn meant the employees who were there were often yelled at by customers for taking so long with everything. They also refused to give me my raise once I became a manager even though they expected me to do all the extra work of a manager. At one point I even discovered that some of the new employees I had had trained were making more money than me. It was bad. Anyway, the place had two really small bathrooms that could barely accommodate a total of five people (men and women), the men’s room being the worst of the two since it had only one toilet. Adding to my frustration I had been told in no uncertain terms that I could no longer use the women’s room during an emergency because a customer had complained. No one seemed to care that I had a medical condition and that they were probably in violation of some law.

One day while working a ten to four shift I was told by an unhappy customer that the toilet in the men’s room was clogged. This was around eleven thirty I believe because when I told the General Manager he said he would worry about it after the lunch rush was through. Startled, I told him he could not leave a bathroom unusable during an entire lunch rush, especially not when it seemed like people were frequently using the toilet given how often I had to wait when in the middle of a diarrhea attack. Naturally he told me not to worry about it because it wasn’t my concern. I disagreed, but kept it to myself. Anyone with Crohn’s Disease will know that finding yourself working all day in a location without a bathroom is of the utmost concern. In fact, once such a situation is realized it is hard to think about anything else.

Several more people complained to me during the lunch rush and I apologized to them for the bathroom situation. Of course this wasn’t enough to make them happy and almost all called in complaints to the head office, and since I was the one talking to them, guess whose name they filed the complaints against.

By two o’clock the lunch rush was over yet the toilet situation had not been looked at so I mentioned it to the General Manager again. This time he told me he couldn’t do anything about it until one of the other senior managers came in because he was going to have to go out and get the tool needed to work out the clog (in the past they would have just called a plumber but due to the owners not wanting to spend much money such calls were no longer made when things like this happened and instead the place would rent a piece of machinery to use). Shaking my head I went back to work, and sure enough within about thirty minutes started to feel some rumbles of trouble in the intestinal track.

Hoping it was just pain and not really a sign I would be having diarrhea, I went about my job until about three fifteen, which was when I knew I was going to have diarrhea within the hour. By this time a senior manager had arrived, so the General Manager was off picking up the special plumbing tool they needed, one that I knew was a half hour away since I had been sent out to pick it up in the past when the toilet had been clogged. He would not be back in time. So, with only forty five minutes left to go and the place pretty much empty of customers given the midday time, I asked the senior manager if it was okay if I headed home, which was only five minutes away, and told him I was going to have stomach issues. He said no because he didn’t want to work the front of the restaurant by himself. I understood this since I had been working it by myself for two hours -- ringing up orders, plating them, and serving them, all while tending to the drive through as well (way too much for one person).

As you can probably guess, the diarrhea hit before my replacement was going to be coming in at four and before the General Manager was back with the plumbing tool. Given how empty the place was I probably could have used the women’s room without a customer complaining again, but I decided to teach the General Manager a lesson. It’s something I still feel a bit silly about, but hey, when in a situation like that thoughts and decisions aren’t always completely rational. Add in the B-12 deficiency I was suffering at the time and my mind was pretty much useless. To this day I have no idea what happened after I finished filling up that clogged toilet bowl. All I know is my time in the bathroom took me up until it was time for me to leave, the senior manager forced to work the front of the restaurant while I was in there, and that I clocked out and went home without really saying anything. No one ever confronted me about the situation, nor did anyone ever talk about it.

So, anyone else ever find themselves in a similar situation? If so what did you do?

My Crohn’s Disease Facebook Page

2011-10-07T10:39:00.003-05:00

For several months now people have been emailing me asking if there was or ever would be a Facebook page for this webpage blog. In the beginning my answer was always “no, not at the moment, but maybe one day,” followed by a link to several great Facebook Crohn’s Disease pages. Sometimes this satisfied those that were asking, sometimes it didn’t, a follow up email often arriving with a plead that I create one sooner rather than later, because, as they put it, they like my sense of humor about this disease and thought it would be fun to be able to interact with me on a Facebook page. At first I never understood why one couldn’t interact with me on my normal Facebook personal page, but now realize that I have so many different groups of friends on there -- Civil War reenactors, history buffs, horror fans, writers, book reviewers and Crohn’s Disease sufferers -- that it became hard for people who just wanted to focus on Crohn’s Disease. Some also expressed shyness about interacting with me on there due to how many non-Crohn’s Disease people would see it as well. Because of this I decided it was time to create a My Crohn’s Disease Facebook Page. Of course I will still post Crohn’s Disease stuff on my regular personal Facebook page, but will focus more on the My Crohn’s Disease Facebook page when asking questions and encouraging people to share stories about themselves. So, without any further explanation, here is a link to the My Crohn’s Disease Facebook Page. I hope people join it and share their stories and thoughts and information on this horrible disease.

Can You Eat Yogurt?

2011-10-03T13:11:00.001-05:00

Last year I wrote a few posts about how eating yogurt everyday has helped keep my diarrhea output under control. Ever since then I have been getting angry emails from people who tell me yogurt is on some Crohn’s Disease ‘do not eat list’ (apparently along with every other ‘dairy’ product) and that I’m jeopardizing my health and the health of others by eating it and telling others that it helps me. So now I have to ask, does anyone else eat yogurt regularly as a part of their Crohn’s Disease diet or do you stay away from it? For me I eat it everyday, not because I necessarily like it, but because I like that it replaces the good bacteria that is essential to the proper function of the small intestine, which in turn seems to keep the amount of diarrhea I suffer at a pretty low level (Crohn’s Disease often kills this good bacteria). The fact that I’m able to go on long road trips, out to movies, out to dinner, camping almost every other weekend, and work 14 hour days on movie sets without much fear to me is proof that the yogurt is working. Sure I do suffer diarrhea from time to time, my Bill Pooped Here blog posts show this, but I seem to suffer it a lot less than others with Crohn’s Disease. I also seem to be able to eat foods that most people with Crohn’s Disease stay away from, foods that will cause me diarrhea if I don’t eat the yogurt regularly (I know, because for a year right after my diagnosis I wasn’t eating yogurt and suffered diarrhea everyday). Nothing I say within my reply to these angry emails seems to get this point across and instead causes more angry replies from the people sending them. I don’t know why. Some even while tell me that they can’t wait for the day when I suddenly find myself in the hospital because I have ruined my life by eating something like yogurt. So again, I have to ask, does anyone eat yogurt or am I the only one. If you do eat yogurt is there a certain kind you eat that helps? I only eat the Yoplait Original French Vanilla yogurt, mostly because I’m not a fan of eating anything with bits of fruit in it. I also have never really experimented with various yogurts to see if any have a negative effect on me (the only exception being the yogurt smoothies I used to buy that seemed to cause a lot of diarrhea -- see the Back to Regular Yogurt post). Instead I stick with this one because it seems to do the trick. Last but not least, if you don’t eat yogurt how do you maintain a healthy balance of bacteria in your intestines?

Can You Eat McDonalds?

2011-09-26T13:31:00.000-05:00

As a kid I used to love going to McDonalds, especially when they had different toys in their Happy Meals. Collecting those was fun. I probably even have some of the old Little Mermaid toys packed away in a box somewhere. Those are the ones I remember the most, probably because it was the first Disney Movie I saw in theaters. Actually, now that I think about it, it was during a second or third viewing of that movie when I had my first ‘diarrhea while at a theater’ experience as well (more on that in another post). Now, as an adult, I still love going to McDonalds, but I have to be careful with what I eat. For instance, if I consume a burger or their French fries I will suffer for it, no questions asked. Five times in the last year I have experimented with this and five times I have found myself folded over on the toilet a few hours later. It never fails. Eating a burger or French fries from McDonalds is like the equivalent of taking Go-Litely or Fleet phosphsoda during a colonoscopy cleanout, just better tasting. What’s odd is that burgers and French fries from other places don’t do this. In fact, my experiences with these two foods when it comes to places other than McDonalds is so good that I won’t hesitate to eat them while on a road trip, my destination still several states away. Also odd, not everything on the McDonalds menu does this to me. I have no problem eating their different chicken sandwiches, my only request being that they remove the lettuce. Everything else is fine with me, including the mayo which most people with Crohn’s Disease tell me to stay away from. I never have a problem with it unless my body is in one of those ‘flush everything out’ modes (a week ago this seemed to be the case - remember the Bill Pooped Here, Bill Pooped There, Bill Pooped Everywhere post?). I also don’t have a problem with any of their breakfast items and more often than not will find myself walking in to the establishment around ten o’clock to order a Bacon, Egg and Cheese bagel with a hash brown thingy and a medium cup of coffee, five creams and five sugars please! (the coffee part always seems to be the hardest thing for them to get right some reason). This breakfast item is also a common purchase on my road trips whenever I’m forced to leave during the early morning hours, and was the only thing I ate for breakfast back when I was forced to ride my bike to work every morning because there simply wasn’t anything else within riding distance on the way. Now I know what you’re going to say to that, why not eat before you left? The answer is simple; I didn’t want to eat anything before riding the five miles, not when I would probably leave it all over the sidewalk somewhere on one of the uphill parts. Hey, at least I was riding a bike ten miles everyday, right.

So, does anyone else out there have a problem when it comes to eating McDonalds? If so are you able to eat anything from their menu or does everything kick your butt. Also, are the things that kick your butt unique to McDonalds, or are you unable to eat those items no matter the restaurant serving them to you? With me the items on the menu from McDonalds that I can’t eat are pretty much isolated to this particular establishment. What’s funny about this is that some of the menu items I can eat from McDonalds are items that I can’t eat from other places. Take the Bacon Egg and Cheese bagel that I talked about. Ordering one from McDonalds doesn’t cause a problem, but if I order one from Dunkon Donuts I’ll be paying for it a few hours later. Never fails. I don’t have a problem with their donuts, however, but such foods aren’t really my favorite thing to eat in the morning. Sweet pastry items of any kind have never been high on my list as a breakfast food. Of course this doesn’t stop my parents from always buying me a coffee cake on the morning of my birthday for some reason and then voicing surprise when I don’t want any. That in itself is a rant for another post, however.

Colonoscopy Preps - Anyone Ever Just Take Pills?

2011-09-24T13:29:00.001-05:00

Like most people with Crohn’s Disease I’ve done more colonoscopy colon preps than I would care to remember (three for the actual colonoscopy procedure and one for my intestinal resection surgery). Most people are surprised, however, when I tell them that I don’t mind the colonoscopy itself and that all my bitching and moaning beforehand isn’t from the procedure, but the fact that I will have to once again ingest some foul tasting liquid. The reason for their surprise is because most people seem to mistakenly think you are fully awake for the procedure, and thus must endure the pain of having a pop can sized camera and gastrological Swiss army knife shoved up the butt and threaded through the nine feet of large intestine. Occasionally this camera will also peek into the small intestine in a little ‘hello anything here that I should know about’ sort of way. The fact is you aren’t awake for this test, at least not in a way where you will consciously remember anything, and without memory events don’t really exist. You may be in pain during the test given your twilight state but it never registers, so you will never know it even occurred unless they tell you. In fact going in for a colonoscopy is like going into major surgery minus all the cutting and recovery time. One moment you suddenly feel drowsy, the next you are opening your eyes several hours later while lying on a bed, the procedure over. Of course unlike a major surgery, you almost always experience an epic passing of gas after the colonoscopy procedure - if you wake up in time. The reason for this is because they puff up your bowels with air so that they can thread the tools inside. Having this gas can be painful, it was for me the second time around, so the best thing to do is just lie on your side in the fetal position and wait it out. Also, if you are self conscious about such things, it probably is a good idea to wait for this experience to be over before having the person who is driving you to and from the procedure come join you in the waiting area.

Anyway, the reason for this post is to ask if anyone has done the colonoscopy colon prep without having to ingest the foul tasting -- like drinking from a seasoned fist tank -- liquid. All over the place I hear about people being able to take pills for their cleanout, ones that apparently work just fine in flushing out the walls of the intestines and clearing the way for the camera to see everything. My doctor, however, never wants me to take them. He does let me do the Fleet Phosphsoda, however, which is a godsend since it is only two glasses of briny tasting liquid rather than a gallon, but still, if I could do away with that as well, I would. Now I just want to know if those pills really work. If they do I will stand my ground on the issue and demand I get to give those a try rather than drinking anything because to me the forced ingestion of the foul tasting liquid is the worse torture possible. I simply hate it. I won’t even use a glass I like for it because afterward I can never use the same glass again without wanting to gag from the memory. Just thinking about drinking that stuff while writing this is making me want to puke, and the last time I went through a cleanout was in 2006 two days before my surgery. Five years and it still holds power over me. Worst of all I know I’m going to have to do it again soon. People with Crohn’s Disease are frequent flyers when it comes to the colonoscopy procedure and even though I’m feeling pretty good chances are my doctor will order one next time I see him. So, if the pills do work, and if I can go in with their name and statements from others who have used them, that would be spectacular.

UPDATE: Here is a link to Jenni's Guts, the wonderful blog of a friend with Crohn's Disease that talks about using the All Pill Method I've been so interested in.

Marshmallow Tea - Anyone Ever Try It?

2011-09-21T17:41:00.001-05:00

For quite a while now I’ve been reading up on Marshmallow tea, my main focus being how it has been used for ages to help sooth the effects of intestinal ailments and ease the inner traumas caused by diarrhea. Apparently Marshmallow tea also acts as an anti-inflammatory, a side benefit that would be very helpful for someone like me who frequently suffers various joint and muscles pains, but absolutely refuses to take Tylenol or Advil (the former simply because I do everything within my power to distance myself from this ‘pill popping’ world, the latter because people with Crohn’s Disease should never take Advil or anything else that can cause damage to the intestines). Unfortunately I have not been able to get my hands on any Marshmallow seeds, and therefore have not been able to grow the flower myself this season. I also hesitate to buy the Marshmallow tea products from the different stores that sell such things, because unless I knew for sure that the seller was someone who specialized in healing teas how would I know I wasn’t getting some fad product that wouldn’t help at all? Kind of cynical, I know, but when testing something like this out, its always good to err on the side of caution and make sure you are actually getting the plant that is talked about in the history books rather than something that has been created from its extracts and spiced up with chemicals. Hell, if it was something like that I wanted I would just go buy an item produced by the pharmaceutical companies and call it a day. Anyway, I’ve very curious as to how well Marshmallow tea would work for someone like me, not as a silly ‘cure your Crohn’s now!’ product, but as a beneficial concoction that helps improve ones quality of life. I also like the idea of growing a plant myself that people have been using for centuries, one that science has confirmed to be helpful. The fact that there are no known side effects to drinking such teas aside from having to pee afterwards also makes it appealing to me, and, if it works, puts it higher up on my list than just about anything I can buy from the pharmacy. If nothing else it would be nice to have another beverage to choose from when contemplating what I want to fill my mug with in the kitchen, a choice I find myself thinking about often given that I work from home and always like to have something like tea, or juice, or -- occasionally -- a soda within reach.

Bill Pooped Here - Lake Villa, IL Civil War Days

2011-09-19T08:45:00.002-05:00

Bill Pooped Here, Bill Pooped There, Bill Pooped Everywhere!!! I think this would probably be a better title for this post since I did a pretty good job of leaving my mark all over the greater Chicagoland area last Friday, but for now I will just focus on the location that saw the most usage. It’s also the only area I managed to take a picture of, my moments at the O’Hare and Lake Forest Oasis while heading north on the tri-state so frustrating and time consuming that I completely forgot to pull out the camera whenever my butt broke free from the porcelain snare. Then again those areas are pretty well traveled so maybe the need for a pictorial image and blog post description isn’t all that necessary this time. I do; however, want to let readers know that I once again was reminded of my hatred of motion activated toilets while at these locations. Making it even worse the stalls were in high demand at the first oasis therefore I gave false hope to a desperate man every time the stupid toilet flushed. Thankfully I was eventually able to pull up some memories of the comments people wrote on my Motion Sensor Toilets - I Hate Them! post and put a stop to the needless flushing with a piece of toilet paper. After having started with the diarrhea around three in the morning in Dekalb, and then continuing with it in Wheaton at my parents house, and then all along the hour and fifteen minute route north to Lake Villa where the reenactment was taking place, it was a small, but nice relief. Short lived though since the gastrological waterslide was still in full swing.

Anyone familiar with diarrhea will know there are several different methods of arrival for this unfortunate villain of the gastrointestinal labyrinth. Sometimes it makes a noticeable fuss early on, its tantrum like cries high up in the small bowel alerting one to the fact that it probably would be a good idea to stay near a toilet for some time. Friends of mine familiar with my disease and the issues it brings call this a Diarrhea Watch (it would be a Diarrhea Warning, but sometimes it turns out to be nothing but odd gas pains, thus, the certainty of the diarrhea actually hitting isn’t enough to issue a Warning). Other times it acts like a well trained Special Forces soldier who is trying to infiltrate the pants, its skill at slipping through the lower intestines without impact making it so one doesn’t notice its presence until its almost too late. At three in the morning I suffered a Diarrhea Watch, my sleep put to an end about an hour earlier as the painful rumblings began. On the road it was more of a Diarrhea Warning, my body knowing the trouble was approaching and that I only had a little bit of time to seek out a toilet. Once I was sitting on the ground in camp at Lake Villa wearing my heavy cotton wool blend Confederate uniform the Special Forces diarrhea struck. Thankfully we were camped within pissing distance of the port-a-potties so I was able to sit down within the disgusting plastic poop booth before adding a new shade of brown to my trousers.

All through the night I was plagued by these Special Forces like attacks. First they came while simply sitting and talking with my friends. Usually I would be in mid sentence when it occurred, my statement quickly changing into one of ‘oops, gotta go piss from the butt for a while’ as I stood up from my ground cloth, my words occasionally followed by my friends joking about how I was going to be pooping out another blog post. Next the attacks came while I was sleeping. These attacks were worst of the two. Getting up in the middle of a conversation to poop is annoying, getting out from a warm layer of blankets next to a campfire in fifty degree weather to go sit in a cold dark plastic box is miserable. Doing it over and over again without any knowledge of how much time has passed between trips is downright hellish. Thankfully I did manage some sleep, the frantic trips to the port-a-potties coming to an end sometime in the early morning hours (around the third time I had to add wood to the fire if that helps). I also was able to function the rest of the weekend without any more diarrhea moments, both on the field and off the field, which was good because the crowd turnout at this event was pretty high and it would have been hard to find a break between talking to groups to use the toilets.

So, there you have it, another Bill Pooped Here moment. Hope you enjoyed reading about my adventure, and stay tuned, because with this disease, I’m sure I’ll be pooping out another post real soon. Let’s just keep our fingers crossed that it doesn’t happen this Friday while I’m driving four hours to northern Wisconsin for another reenactment, or while driving back home that Sunday evening. Of course, if it does, my friends will just laugh and tell me to cheer up, I have another topic to write about. Chances are they will even try to talk me into eating something I shouldn’t just so I have material. Helpful friends I have, right?

Mystery Solved - How I Survived So Long After Surgery with a B-12 Deficiency

2011-09-16T14:08:00.001-05:00

Anyone who knows me or follows this blog probably understands that I suffered a very serious B-12 deficiency following my bowel resection surgery in June of 2006. What many people might not know is that my doctor and some of his medical students who saw me after the B-12 deficiency discovery was made expressed dismay at how long I was able to live and function with it. Actually function is probably stretching it a bit. Live yes, function as a husband, writer, and restaurant employee -- barely. At that time my marriage was on the verge of collapsing (partly because of the symptoms associated with a B-12 deficiency, partly because my wife was miserable with life given her wait to be listed as a possible candidate for a lung transplant -- and because her mother was working to the fullest extent possible to sever our relationship), my writing career had only seen one short story being bought and published in a year, the writing time itself not seeing anything of note produced, and my hours serving customers at the restaurant seemed much harder than it should have been, my mind struggling to accomplish a job that shouldn’t have taken much thought at all. The reason for my doctor’s dismay was because I apparently was supposed to be taking a daily dose of B-12, one that registered near 16,000 percent of what a person with no health issues is recommended to receive. I, however, didn’t take a single B-12 vitamin or any other nutritional supplements between the June of 2006 and July of 2007, my mind completely unaware that I was supposed to be taking such things. I also never saw the doctor during that time, my lack of health issuance due to my part time status at the restaurant, and my time spent carrying for my dying wife, keeping me from really focusing on my own disease. Furthermore, I didn’t really think anything was wrong even though my friends and family keep telling me I looked terrible. It’s just the disease and the fact that I had so much bowel removed, I always told them. Nothing I can do about it. Looking back at that I can’t help but think: what an idiot!

Now, anyone who knows anything about B-12 should know that acquiring the vitamin through normal healthy eating habits is not that difficult and the only reason people with Crohn’s Disease (or anyone with a damaged bowel) need to take it is because their body has trouble absorbing it. Simply put people will Crohn’s Disease need to take more of it so their body will absorb a standard supply, or, if that doesn’t work, get it injected right into the blood stream. B-12 is also a vitamin that gets stored in fat cells, so even if a person with normal bowels doesn’t eat right all the time their body will still get the daily requirement, and chances are, unless they starve themselves, the B-12 that was used from the fat stores will be replaced before one even comes close to a deficiency.

Fat stores of B-12 was the first suggestion on why I didn’t die after going so long without taking B-12, but then eventually the doctor decided this couldn’t have been the answer, not with how sick I was before my surgery and how long I had actually gone without it after the surgery. Looking at what my daily diet was didn’t help answer the question either, because there just was no possible way I could have been getting that much B-12 from the low quantities of foods I was eating. Plus I had diarrhea daily so chances were most of what my body was eating wasn’t getting absorbed.

NOTE: My weight at this time was below 100 pounds, that’s how sick I was.

Unsure of how my body had managed to hold out, but also knowing the B-12 deficiency had been caught and corrected, first with several massive injections of B-12 and then by taking a B-12 vitamin daily and checking blood work frequently to see that enough was being absorbed, we let the question go. The answer just didn’t seem important. That was over four years ago. This week I learned the answer.

For most of my life I have been a heavy tea drinker. If measuring by the tea boxes one can buy at the store I go through one every two to three days. Most of the time, however, I buy the stuff by the pound in loose leaves. Once I was diagnosed with Crohn’s Disease people often told me to stop drinking tea because they thought it would make my diarrhea even worse, but I ignored them because drinking tea was very soothing and tasted good. I also didn’t believe them because I knew that tea has been used throughout human history as a way of preventing diarrhea -- though some always say this was more a result of boiling water to make the tea than the tea itself, thus killing the bacteria that would cause the diarrhea. Either way I didn’t care, I was going to drink tea. Furthermore my doctor had never told me to stop drinking it and since I felt he was probably the best authority on the subject given his status as one of the best Crohn’s Disease doctors in the country, I felt justified in doing so. What I, and apparently no one else who looked at how I managed to stay alive with the B-12 deficiency, didn’t know was that tea actually has the B vitamin in it. Apparently one gets about ten percent of a daily dose for every six cups of tea consumed. With this in mind my guess is that I never dropped below getting sixty to seventy percent of a daily dose -- yeah, I drink the much tea. Add in the little bit of B-12 that I was getting from eating normal foods, and I probably created just enough of a margin to where I could stay alive without taking the vitamin in pill form. It wasn’t enough to keep me healthy, however, and probably wouldn’t have kept me alive much longer if the discovery had not been made, so I’m glad I finally broke down and went to the doctor in July of 2007. Without getting that extra bit from drinking tea I wonder how long I would have lasted. Chances are I would never had made it to the doctor in July of 2007, though I’m sure I would have been rushed to the hospital after passing out at work or at home at some point in the months before.
PLEASE NOTE: I’m not in anyway saying one should drink tea instead of taking a B-12 vitamin. I know I will get angry emails about this from the people who simply skim my post rather than read them. Believe it or not it happens all the time.

My Crohn’s Disease Update - And a Shameless Book Plug

2011-09-11T14:34:00.002-05:00

As some of you may have noticed it has been a while since I posted anything to this blog, much to my dismay. Several various factors played a part in this lack of updates, the biggest one being the fact that I’ve felt pretty good for most of the month and didn’t have any monumental diarrhea (or Crohn’s Disease) issues to fuel things. I did have an interesting road trip adventure that saw many restroom stops, but thankfully it wasn’t a diarrhea issue, just a ‘my colon has a lot of reasonably compacted fecal matter to get out, but wants to pace itself over the next five hours rather than doing it all at once’ situation. Anyone else ever get stuck in such a cycle. It happens to me every now and then, my mind usually wondering how in the world my intestines could have so much crude in them without any feelings of discomfort preceding the event -- aside from that sensation of needing a bathroom at some point in the near future. Of course I’m not complaining. As annoying as it is to go from one rest area to another for normal bowel issues, I would take that over having diarrhea while on a road trip any day of the week. Who wouldn’t? Holding in a colon full of poop that wants to come out while driving can be uncomfortable, but it sure beats having to piss from the butt on the side of the road.

Now, like I said, I’ve been feeling pretty good since my last diarrhea adventure, which took place during a large Civil War reenactment in Virginia in mid July, and have had no horrible moments to talk about. This, however, shouldn’t be a reason for no blog updates, not when I have so much to talk about from previous experiences, so hopefully I won’t let such a thing happen again. Unfortunately I can’t make any promises. Sometimes delays happen. I also may experience moments in the future where I can’t post thanks to the odd situation I now find myself in, that being a lack of Internet and cable service to my apartment. The oddity of this is due to the fact that Comcast seems to think my address doesn’t exist and therefore claims there is nothing they can do about the lack of service. My apartment is the top floor of a house that was divided into units, and while I know this could cause some confusion, I find it hard to believe there is no way for them to get me service when my neighbors have it. Also, the electric company doesn’t seem to have a problem with sending bills to this apartment, which just makes their claim even more ridiculous. Fortunately this hasn’t stopped me from getting online, I just now have to make trips to the library, the local community college, or my parent’s house whenever I want to use it, the latter two being the only ones I can blog from for some reason. Because of this situation I am going to be putting the publish this post in the future option to good use. That way there won’t be several days of no posts followed by a day with several posts.

The other reason I haven’t blogged all that much is because I had a novel published in late July, and have been spending quite a bit of time working to get that noticed by the public. I’ve also been working really hard on finishing up a second novel that is very close to completion, one that I would love to get done before my brother comes home from the army later this week. Of course even if the book isn’t finished by then I will still spend time with him, but I’d rather be able to spend that time with him without my mind always thinking about the nearly completed book. Make sense? Anyway, the book I published in late July, as you can probably see from the posted cover image, is titled JIMMY. It is a dark suspense tale about a young man who will do anything he can to keep the local law enforcement figures away from an abandoned fallout shelter where he is keeping two kidnapped girls prisoner. If this sounds like a book you would like to read, or if you know anyone who would like to read it, it can be downloaded from Amazon for only $0.99. Also, for those of you who are interested, I should hopefully have a book coming out next year that will feature a main character who has Crohn’s Disease. It will be a continuing character series too. My goal for the book, in addition to being a good story that people enjoy, is to be able to share with readers what it is like to live with Crohn’s Disease -- readers who probably don’t do online and read about such things on websites like this. I’ll post more on that as it nears.

Now, before I go, I did have an interesting medical issue a few weeks ago while at a reenactment. It was kind of funny too, more so for the people that witnessed it than myself. I was sitting on a fallen tree talking to my fellow reenactors when I felt the painful pinch near the head of my penis, one that quickly turned into the feeling of someone putting a match head out upon me (this match head thing hasn’t happened to me, but I’m pretty sure the pain was on a equal level). Needless to say I jumped up from the fallen tree and ran into the woods, my back to all my reenactor friends, and pulled my pants down. Sure enough a deer tick had decided to snack upon me. As if one wasn’t enough, however, there were two of them side by side -- synchronized bitters perhaps. I have no idea why the bite hurt since I’ve heard they have a way of numbing the area, perhaps it had something to do with just how sensitive that part of the body is. All I know is that it really, really hurt, and that trying to pull the two buggers off me with tweezers -- while my friends sprayed bug killer all over their own crotches in panic mind you -- was one of the most painful experiences of my life. In the end the two ticks were removed. Even better Lyme Disease is pretty much non-existent in that area, so the fear of it afterward was pretty miniscule, though I’m sure I could have sold the picture of the bull’s-eye on my penis to tons of medical journals. Funny thing is, guess what Lyme Disease is sometimes misdiagnosed as? If you guessed Crohn’s Disease you are correct. Everyone I talk to who knows me finds this kind of amusing.

Living Dangerously -- Ice Cream

2011-08-12T14:59:00.000-05:00

Okay, my title may be a little over the top in the drama department but then these are the thoughts of one who makes a living writing fiction, so hopefully it can be forgiven. And to be perfectly honest there is some truth in the title because when it came to the situation pictured to the left I was ‘living dangerously’; the knowledge of what ice cream can do to my system when in such a state and the fact that I had a long drive ahead of me both sitting in the front of my mind the entire time. The state I am hinting at is one of extreme constipation. I don’t know why, but when constipated ice cream sometimes has the ability to quickly set me free (and by ‘set me free’ I mean push everything out at roughly the speed of light). On the flip side ice cream almost never causes me diarrhea when not constipated, which is pretty odd. Not that I’m complaining because I love the stuff and eat it all the time (back when my late wife and I were both really skinny from our two disease we used to go to Dairy Queen every night one summer because we both loved it so much). Unfortunately this love has caused some of my worst and most painful diarrhea moments ever, the most notorious of which occurred during a fourteen hour car ride on the way home from North Carolina (follow this link for that tale). Actually it was that experience that allowed me to start to realize what ice cream could do to me when constipated, and therefore learn to avoid the stuff when necessary.

Of course even with so many memories filling my mind I will still throw caution to the wind at times; the event pictured being a perfect example of this. It was one of the hottest Civil War reenactments the area has ever seen, and once it was over and we had started packing the car, my friend Tom and I couldn’t resist hitting up the ice cream stand as it prepared to shut down. Ice cream secured, we headed back to the camp and watched as the rest of the group finished gathering stuff up (we don’t use tents so the process doesn’t take long), our fingers quickly becoming sticky as we fought against the relentless heat to eat our cold treats. After that we started heading home, my mind wondering if I would soon regret the decision to eat the ice cream as we flew down the bathroom-less country roads. In the end the answer was no. Nothing bad happened. I made it home without a problem and even waited at a local pizza place for a while before completing the trip because I grew incredibly hungry while driving and knew I wouldn’t want to cook anything after living in the extreme heat for three days. It was an interesting experience, one that goes to show how unpredictable this disease can be and why we should never live in fear of it. Sometimes foods you expect to be okay will cause diarrhea, and sometimes foods you expect to cause diarrhea won’t. There is nothing we can do about it, at least nothing we can do to know with absolute certainly when those moments will come, so why worry. Don’t be needlessly reckless, but also don’t avoid living your life.

Can You Eat Macaroni and Cheese?

2011-08-10T12:03:00.000-05:00

Does anyone else out there suffer in ways that need not be mentioned whenever they eat macaroni and cheese (I’m talking the common box stuff you buy for a buck off the shelf and not homemade varieties). I love macaroni and cheese and used to eat it all the time but now I can almost never go without experiencing terrible bathroom issues in the hours following such a meal. I also can’t seem to counter the bowel problems with my typical preventative foods that I try to eat every morning (bananas, yogurt, rice, etc). Why is this? What is it about the simple varieties of easy to make boxed macaroni and cheese that upsets the much sought after balance within my small intestine? Furthermore why aren’t similar foods -- especially similar ‘tear open the box and dump into a pot of water pastas’ -- causing me the same problems? Is it something about the powdered cheese? Is it the combination of powdered cheese, milk and butter? On their own milk and butter don’t give me problems as long as I eat my preventive foods, so I know they aren’t to blame. At the same time I know that interesting changes can happen within foods during the cooking process, therefore I can’t rule them out when mixed with that cheese. Or maybe it isn’t the cheese, though I hesitate to point at anything else. Pasta almost never causes me problems. In fact, it is pretty much a stable part of my diet, something I eat in many different forms all throughout the week without trouble. However, I do know there could be something in the pasta that comes in those boxes, something that may be added by the companies that produce them for nutritional value, or maybe to help people lose weight (such things are horrible for Crohn’s Disease victims to eat because they usually work by limiting what the intestines will digest), something that should be mentioned on the box but isn’t. Whatever the reason I am saddened by the fact that I can’t eat macaroni and cheese all that often because it is one of my favorite foods, and would love to hear some tips from people if they suffer such problems from this as well but have found ways of continuing to eat it.

Bill Pooped Here - 150th Manassas Battle Civil War Reenactment

2011-08-09T09:21:00.003-05:00

Having diarrhea at a Civil War reenactment is never fun -- actually having diarrhea in general is never fun, but it seems even worse at Civil War events due to the heat, thick wool clothing, and less than tolerable portable toilets one must sit within while depositing the unwanted materials. The horror of such an experience increases when the event is a national event, one that usually is marking the anniversary of a major Civil War battle. The reason for this is simple: they are huge. The numbers that attend a national Civil War reenactment are almost always in the tens of thousands, and that isn’t counting the amount of spectators that come to watch. Because of this one can expect long lines at the bathrooms even when the event has an adequate number of such portable toilets. One can also expect the conditions within to be pretty disgusting, more so if the event is a hot one.

At Manassas the average daily temperature was over a hundred degrees, the low at night in the mid to high eighties. I think that qualifies as a hot one.

My diarrhea hit on Saturday night. My unit had already been living and sleeping outside in the snake and tick infested woods for two days at this point, our bodies completely ravaged by the strenuous circumstances the event was forcing us to endure -- heat while wearing thick wool uniforms, long drawn out battles where we are loading and firing our black powder rifles as fast as possible before getting shot down and laying in the sun, and marches that lasted nearly an hour on unsteady terrain in simple leather shoes. Our food wasn’t very helpful either and basically consisted of anything we could cook over the fire (see the second and third pictures below of me breaking up coffee beans in a cup with my bayonet to boil). Worse of all I was unable to eat my standard banana a day simply because they were impossible to carry without being ruined in those conditions. The yogurt, which gives my body the much needed good bacteria was also out -- though I had tried to eat as much as I could in the days leading up to the event.

I was walking back from a mile long trip to my car where I had put away an unneeded extra uniform that I didn’t want to carry on my back into the battle the next day when I felt the first rumble of diarrhea within my bowels. There were three of us walking and I had the group hold up as we neared the first set of portable bathrooms, ones that were actually pretty spacious since they were for handicap spectators. Best of all these bathrooms were completely empty because the event was closed to the public by this time of night so I had no one waiting to use them. The temperature outside had also cooled to a tolerable point so it wasn’t horrible within, though still pretty disgusting. Sadly the rumbles were just a warning that diarrhea was coming. I still had a good twenty minutes (I decided while in there) before it would arrive.

Not wanting to wait down in that area, I left the bathroom without unloading anything and told my friends we could continue toward camp -- another ten minute walk. During the walk the rumbles continued, one of which knocked me to the ground, but were still not at the level where I had to go. Ten minutes after getting to camp, however, one hit that told me I better make my way to the nearby toilets, ones that, unfortunately, were not spacious like the handicap ones had been, and were being used by hundreds of people every hour. Luck was with it seemed though since I somehow hurried toward them during a lull and didn’t have to wait in line. It was then that I learned the painful rumble I had just experienced was another false alarm and I still couldn’t go.

Not wanting to give up my toilet -- who knew how long of a line would develop if I left and came back -- I waited within for the diarrhea to finally arrive, my sweaty cotton shirt that I’d been wearing for two days straight stripped off of me so I could press it to my nose whenever the smell from both the steaming fecal matter stew below and the stupid urinal bucket next to me got to be too much. It took almost forty minutes, a time which was filled with painful cramps as the diarrhea worked its way through. At some points during this my fellow unit members came by to ask me if I was okay, concern at the time being spent within spurring them into action. I told them I was experiencing a diarrhea traffic jam, something I have joked about often with them, and that set their minds at ease.

Eventually the diarrhea hit and came out at nearly the speed of light, which of course rubbed me raw to the point where I gritted my teeth every time more came out. It also hurt to sit on the ground afterward. Worse of all was the continued heat which caused sweat to flow everywhere, butt crack included, which stung and forced me to sleep in the woods without a blanket because it was just too hot. This left me open to a feeding frenzy of ticks and chiggers which chewed on me all night long, my body riddled with disgusting puss filled bumps the next morning, ones which started to burst whenever I scratched them. Ticks also had to be ripped free, their tiny bodies having burrowed themselves into my legs that night. Added to this was the continued feeling that I had to go to the bathroom all the time even though there was nothing left within.

Thankfully nothing else arrived that day -- maybe because I tried to counter it with cups of strong tea that I brewed over the fire, or maybe because I had barely eating a thing for four days and thus nothing was left. Whatever the reason I didn’t have to get into the bathrooms again, though I did pose near one for a picture (it drew laughs from the people waiting in line, many of whom know about my blog and these posts), and managed to last the rest of the event without incident. The same could not be said about the fifteen hours ride home, however . . .

"It’s Crohn’s Disease, NOT Chrones Disease!”

2011-07-16T16:07:00.000-05:00

Does anyone else get frustrated by this common spelling mistake when dealing with Crohn’s Disease? I personally can’t stand it; however, I won’t jump down the average person’s throat when such an incident occurs. Instead I will politely correct their spelling mistake if the situation warrants such a correction and move on. The same cannot be said when I am faced with someone that claims to be able to cure my Chrone’s Disease, especially if they try to tell me they used to suffer from Chrone’s Disease themselves. When this happens (usually in my email or in the comment sections below) I pretty much rip the writer of the statement a new one, my fingers racing across the computer keyboard without stop until the reply is ready to be sent. The reason for this is simple: going through life with a painful disease that has no cure is bad enough, but then to have people prey upon you because of the disease, people that can’t even show enough respect to look up the correct spelling of the disease, is completely unacceptable. Such a person deserves no mercy. Another thing I can’t come to terms with are people who have this disease but continuously misspell it because it just makes me wonder what the hell they are doing. How can someone go through life with a disease that ravages the body and not even know how to spell it correctly? That just boggles my mind. Don’t they want to understand the disease they suffer from? Shouldn’t one be doing as much research on it as possible so they can have a conversation with the doctor when in their office, and, even more important, understand why he or she is suggesting the various treatments they might have to undergo. Such steps are incredibly important when forced to live with something like Crohn’s Disease.

Cat in the Toilet -- Almost

2011-07-14T10:29:00.003-05:00

Anyone else out there have a cat that feels compelled to supervise while you use the bathroom, one who will freak out if you manage to shut the door between them and the toilet you are sitting upon? If so what do they do if they happen to be inside while you are in the midst of a nasty diarrhea moment? Are they content with just watching or do they want to rub your legs before jumping in your lap -- I’m guessing to provide comfort and support?

My cats are the type that will try to lend a hand (paw), so I do my best to lock them out of the bathroom whenever the moment arrives. Unfortunately I have a door that will swell when humid, one that also doesn’t lock or latch properly, so if I don’t take a few seconds to make sure the thing is fully shut they will manage to push their way in. It also doesn’t seem to matter when I’m using the bathroom, or what state of unconsciousness the cats are in at the time, because the moment they sense that door getting ready to close they will do everything within their power to be on my side of it before it shuts, or, if too late, everything they can do to get inside once it is shut -- this includes screaming at me as if they are being slaughtered within the apartment. Occasionally the really smart one will also get up on the kitchen counter and make noises, probably in hopes I will come out to tell him to get down, at which point he will run inside the bathroom and await my return. It is a trick I don’t fall for, because; let’s face it, when in such a moment the last thing you want to do is leave the toilet. It is something the cats don’t understand because they have no problem leaving the liter box if something catches their attention before they finish, the last of their ‘deposit’ often following them out into the main room of the apartment

Anyway, a few days ago I found myself in a situation where the door didn’t latch all the way, and sure enough the cats managed to push their way in. At first the two were content with just watching from the doorway, but then Toby, the smart one, decided he needed to rub my legs for support. It was an act I wasn’t in the mood for, but really couldn’t prevent. And then he prepared for the next phase, which was lap jumping, so I quickly leaned forward so that my chest was close to my knees, thereby blocking his landing zone. It worked, but not in the way I had hoped because instead of jumping into my lap he jumped onto my back.

Ever have a cat on your back while having diarrhea?

Let me just tell you nothing good will come of it, mostly because even if you are really skinny like me from the Crohn’s Disease, your back still isn’t a flat surface while leaning forward which means the cat has to dig in if he wants to stay. It gets even worse if you try to grab him and twist around a bit, or move slightly so that they can step up onto the back of the toilet. I went with the second option -- trying to get him onto the back of the toilet -- which caused him to panic and grab the back of the seat lid, which then closed against him and my back. After that he started to slide down toward the opening in the toilet between my lower back and the seat, and, knowing he didn’t want to end up in there quickly dug his back claws into my flesh and held on for dear life. Next he somehow used my back as a springboard to get onto the windowsill, claws digging in even further so he could get enough traction to launch himself, all while I was screaming at him to get off. It was quite the moment, one that ended with him staring at me from the window while I stared back, the toilet lid painfully resting against my torn back. A few seconds later he began cleaning himself while up there, almost as if nothing crazy had happened. I couldn't believe it. Never again will I sit down upon that toilet without making sure the door is firmly shut.

Bill Pooped Here - Wauconda Civil War Reenactment

2011-07-13T11:31:00.003-05:00

Okay, truth be told, I didn’t actually poop here this past weekend (though it most certainly wasn’t for a lack of trying), however, these portable toilets do mark the spot where I had one of my worst diarrhea moments of all time. It occurred back in July of 2007. Jen and I had just gotten home from her lung transplant evaluation in St. Louis a few days earlier and were getting ready to move down to St. Louis the following week. The Wauconda Civil War reenactment landed on the weekend in-between, and, despite not feeling well at all, I decided to attend. Little did I know I was pretty close to death at this point, my body having been suffering a B-12 deficiency for many months thanks to my not having realized I was supposed to be taking B-12 following my surgery a year earlier. I also wasn’t going to the doctor like I should have been due to a lack of health insurance -- I was supposed to have it with my job but they screwed me over due to a few weeks where I worked part time rather than full time because my wife was in the hospital. I also wasn’t going to the doctor at that time because I figured my weakness and frequent diarrhea was just a result of the Crohn’s Disease and thus something I needed to get used too. I used the same excuse with my low weight which had dropped below a hundred pounds by that point. On the plus side I did look like a very accurate Confederate soldier.

So, there I was at the reenactment, body clad in a heavy wool uniform, temperature outside nearing a hundred degrees with like an eighty percent humidity. The night before I had tried to sleep on the ground next to a campfire with a wool blanket, body unable to get much rest due to joint / back pain, a blinding headache, and the mosquitoes which were buzzing in my ears all night long. Saturday night promised more of the same but I was determined to stick it out because I hadn’t been to a reenactment in a while and actually did enjoy myself during the hot days when I got to talk to the crowd about what life was like for the average Civil War soldier. And then it hit . . .

My food all that day had been stuff we cooked over the campfire plus a real greasy fried chicken the event had given us, items that were sure to cause diarrhea back then. Of course, during that time period everything seemed to cause diarrhea so I kind of expected it. I also figured I didn’t have to worry about finding a bathroom because, as you can see from the picture, they had a dozen of them thirty feet away. Little did I know those bathrooms hadn’t been cleaned at all since the event had begun, and there wasn’t a single square of toilet paper left in any of them -- normally this is never a problem at reenactments, so someone really screwed up when planning that event. Even worse, they had pretty much been in the sun all day, so the smell was . . . well, I’m sure you can image it.

The diarrhea cramps hit after dark while I was spread out by the fire, but didn’t actually mean I was going to have diarrhea for a while, so I sat there waiting for the moment to come. Looking back it would have been better if I had at least gone into the bathrooms to see what awaited me because I could have made other plans while I still had time. Once the diarrhea hit it was too late. I hurried to the bathrooms and found the first one pretty much filled up to the toilet seat with all kinds of waste, both bodily and just stuff people had thrown away (I was only partially able to see thanks to a light that was shining from the one of the event buildings). Not wanting to use that one, I moved to the next and then the next and the next, my eyes soon discovering every one was pretty much full to the top and that I had no choice really and had to sit down at one and suffer the splashback that occured. As you can image the buzzing flies provided even more disgust, especially when considering all the juicy areas they had most certainly visited prior to landing upon my exposed flesh. I then discovered there was no toilet paper. Thankfully it was dark out and there weren’t many people around so I didn’t see a problem with ducking over to the next toilet while partially exposed, and then the next one when I discovered that one was out of toilet paper as well. Eventually I realized I was out of luck and hurried over to the woods to use some leaves to clean myself off. Unfortunately I could tell I didn’t do a good job after I went back to camp and could smell fecal matter rising up around me.

Not long after that I was hit with more diarrhea and rather than attempting to use the portable toilets I simply headed into the woods and sat against a tree, my pants completely off so I didn’t have to try and dodge them, mosquitoes attaching me like crazy. This occurred over and over again for about two hours, and at some point I decided it was time to head home. Of course it was over an hour drive and the diarrhea did not let up. Making it worse some of the trip was through wooded areas so I continued having to use trees and leaves whenever the moment came. It was horrible.

Two days later I finally went to the doctor. It was then that I learned about my B-12 issues. Ever since then things have been better. I still have had a fair share of diarrhea incidents, many while out at reenactments or while on the road, but none were ever as bad as that experience at the 2007 Wauconda Civil War days. Thankfully that event has also realized they need to have someone come out and clean those toilets everyday -- in fact, they do it twice a day now.

Can You Eat Popcorn?

2011-07-12T13:26:00.000-05:00

I have often heard from many people that eating popcorn is a huge no no when it comes to living with Crohn’s Disease. In fact, knowledge of the ill effects popcorn can have on people with Crohn’s Disease is apparently so well known that my late wife and her family used to try and prevent me from eating it whenever it was in the house, or scold me for having some while at the movies. Some online even go so far as to say that eating it will earn those of us with this disease a quick trip to the emergency room. What is odd is that my doctor never told me to stay away from popcorn before or after my surgery, and I also have never once had a problem with eating it, which in turn means I have no hesitation when it comes to ordering a giant bag of it while at the movies, or popping it up when viewing something at home. Am I the only one that is able to enjoy this wonderful treat? Does anyone else out there recklessly eat popcorn all the time because it simply doesn’t deliver upon all the threats we have been told to expect?

Florescent Green Urine - A Funny Side Effect

2011-07-07T08:29:00.002-05:00

Anyone that suffers from Crohn’s Disease most likely also suffers from a need to take vitamins thanks to the lack of absorption that occurs within the small bowel due to inflammation and / or segment removal. B-12 is the most common vitamin deficiency found with Crohn’s Disease and one of the most dangerous because it is needed in the creation of red blood cells. Folic Acid often comes next if a patient is taking Pentasa, which is why one often gets a prescription for high doses of Folic Acid when getting one for Pentasa (if you have a doctor that doesn’t give you a Folic Acid prescription when prescribing Pentasa say something right away or find a new doctor, it is that serious). Other vitamin deficiencies come about when patients restrict their diet, or just don’t eat enough of certain foods thanks to low appetites. With me this resulted in an Iron deficiency earlier this year, one which may have also contributed to my constant feelings of fatigue if the link between Iron deficiency and restless leg syndrome is true (I’ve always suffered bad restless leg syndrome and now they say Iron deficiencies may make it worse). I’ve also had other vitamin issues which is why I was forced to re-evaluate my diet last month, something that I wrote about in a post titled Time to Refuel My Brain. In addition to eating better I have started taking more vitamins to help get the nutrients I need. At first this meant taking several different pills a day, which I hate to do, especially when they all have to be taken with food. I then found some of the vitamins I needed like B-12, Folic Acid, and Vitamin C could all be taken in one Super B-Complex vitamin. What I didn’t realize at first was that the Super B-Complex vitamin didn’t contain Iron, which meant I couldn’t eliminate one of the other pills I was supposed to be taking, which then meant I had to go back to taking all the pills I had been taking before, because the pill with the Iron didn’t have the B-12 or Folic Acid. I then ran out of the stand alone Folic Acid vitamins I had, and since I hated taking all these different vitamins anyway I decided to just take the Multi-Vitamin one that contained Iron and Super B-Complex one. Because of this I was now getting all the vitamins I needed, but doubling up on many vitamins I didn’t have deficiencies in. None of those were the type that would cause an upset stomach, however, so I figured I would be okay. I wasn’t expecting them to turn my urine a florescent green. Talk about a startling surprise one morning. It looked like I was generating a lime flavored Juicy Juice or Kool-Aid.

The reason for this was simple; most of the vitamins I was taking will get flushed out in the urine if the body already has what it needs. It is something I always knew could happen but wasn’t expecting to see given all my vitamin deficiencies. I also wasn’t expecting such a bright green color to come out of me; though I have to admit I knew that could happen as well. Now I’m just thankful it was green and not say red, because I would have thought there was blood in my urine, which would have caused me to panic and then probably spend quite a bit of money on medical tests I didn’t need.

Bill Pooped Here - New Photo Journal Series

2011-07-06T09:52:00.001-05:00

Like many of you out there I often have to make unexpected poop stops while out and about, many of which take place in bathrooms that could make a bucket in the woods surrounded by poison ivy seem more appealing. Now I don’t know why, but for a long time I have stayed pretty silent about these bathrooms, and never really gave serious consideration about keeping a record of all the crazy places I’ve been forced to visit (though I would write about some of the bad ones every now and then). Today that silence will come to an end. From this point on I’m going to take pictures of all the disgusting bathrooms I visit when diarrhea hits (and maybe the not so disgusting ones too), and post them on this blog. I will also write about what it was like to venture within, and whether or not there was fear involved given the location.

Methodist Camp Grounds, Des Plaines, IL

Many of my sudden bathroom stops occur at or when driving home from Civil War reenactments, which I pretty much take part in every other weekend from March until October each year. It is the three days of camp fire food followed by sudden real restaurant food Sunday evening that does it to me (and the other guys sometimes -- more on that in another post). The picture posted is from one of these moments -- my friends thought it would be funny to take it while I was inside. We were doing a Living History Civil War event at the Methodist Camp Grounds in Des Plaines, IL, and while getting ready to leave I started to feel that familiar bumbling sensation that warns diarrhea is on the way. At the time we were also experiencing a severe thunderstorm, and for some reason hearing the heavy downpour of rain all around me was adding to the urge. Knowing it was going to hit, but thinking I had time to make it to a real bathroom -- I had already ventured into the one pictured to pee during the weekend and knew I didn’t want to poop in there -- I told the guys I was driving with that we could start heading toward the restaurant we planned on eating at. It was a mistake. Making it worse the parking lot had speed bumps in it, ones that seemed to jiggle everything around while leaving, and then made it almost impossible to keep everything inside when heading back in so I could use the bathroom.

Now I know what you are thinking: what was it about the bathroom that made me risk driving on the expressway when a severe diarrhea warning was in the air? The answer is simple: the stalls in the bathroom were so small that while sitting down it was impossible to close the doors because your knees stuck out. Even worse the doors didn’t have locks on them. Because of this one had to sit there holding onto the bottom of the door to keep it from its natural open state, all while having ones feet stick out beneath it. The smell wasn’t too pleasant either, but that is pretty common for bathrooms like that. Adding to the misery was the limited number of stales in the bathroom which meant lines developed easily. Knowing you are holding things up is bad enough, but having to do it in a stall that won’t close all the way where everyone can see your feet is horrible. Thankfully because of the storm outside I was the only one in the bathroom. It was a small blessing.

So there you have it, the first entry into my new Bill Pooped Here Photo Series. I ‘m guessing more will follow pretty quickly. I have several long road trips coming up, one to Virginia, and one to the western side of Missouri, and already know I will be hit with diarrhea at some point during these two events (it always happens). Now I just have to remember to take pictures.

I Made the List - 101 Helpful Sites for Kids ‘n Teens with Crohn’s (and their Parents)

2011-07-05T19:44:00.001-05:00

I must say, I wasn’t expecting to see my little Crohn’s Disease blog listed on the 101 Helpful Sites for Kids ‘n Teens with Crohn’s (and their Parents) list. In fact my sole reason for being on the site was because I saw a Facebook link from my fellow Crohn’s Disease blogger Jenni stating that her blog Jenni’s Guts had made the list (very well deserved I might add), and decided to just scroll down and see if anyone else I knew was on there. To my surprise My Crohn’s Disease was listed, but then I shook my head and told myself my title wasn’t all that unique and therefore it could easily have been another blog, one where the author actually updates regularly rather than letting weeks go by with nothing. It wasn’t another blog though, and within seconds of clicking the link I found myself staring at my own page -- at myself going under the knife actually -- and realizing that maybe the site is helpful. I also realized I hadn’t written anything for nearly a month which is just unacceptable and once again have vowed to do a better job at chronicling what my life is like with this horrible disease. So, without any further blabbering by me, I would like to thank anyone that was involved in getting my site listed (I really have no idea what the process was or that my site was even being considered for something like this), and give a job well done to all the others who had their sites listed.

Time to Refuel my Brain

2011-06-08T21:11:00.001-05:00

It’s amazing how long it can sometimes take for me to realize something is wrong. I’m not sure what the reason for this is, but several times now I’ve unknowingly waited until things got really bad before I started to seek out a solution. The best example of this occurred in the year following my surgery. Somehow I failed to realize I was supposed to be taking large doses of B-12 everyday and started to become seriously ill once the reserves within my body were used up (about 6 - 7 months after the surgery I think). The problem was I never understood that I was growing sick. The process was too gradual. I was also too accepting of what I thought were normal ‘post surgery changes’ within my body, and life changes outside of my body. Diarrhea every couple of hours, well duh, they cut out a lot of intestine. Frequent overwhelming fatigue, that’s because my body works harder than most thanks to the autoimmune disease and the fact that I work several open to close shifts every week that require me to stand on my feet all day long. Mood swings, depression, and headaches, that’s what happens when you hate your job, can’t sell any fiction all of the sudden, have a brother in a combat zone, and live with a wife whose terminal disease took a nose dive right after the marriage and who is angry at the world because of it. Yep, I had an excuse for all the reasons I was feeling yucky, ones that led me to believe everything was perfectly normal, and therefore never felt the need to call my doctor. Then, thirteen months after my surgery I went in and scared my doctor and his staff so much by my appearance that they wanted to hospitalize me on the spot. The problem, severe B-12 deficiency; the solution take a B-12 pill everyday (shots if those weren’t getting enough into my system). How easy was that? Even better all the problems I had been having disappeared within a few weeks and I felt great.

Lesson learned? Well, I’ve never had a serious B-12 deficiency since then, so the answer could be yes, however, I did allow a different problem to unfold, one that I didn’t fully recognize as a problem until yesterday.

It has been going on for about a year. During this time I found myself growing less and less able to write, but never really considered it a problem within my body. Instead I just kept telling myself that I was losing discipline as a writer and wasn’t focusing hard enough on getting my ten pages a day completed (missing the goal one day makes it harder to accomplish the next day and so on and so on). I also was allowing myself to oversleep -- a problem I never suffered before -- and since my creative drive has always been strongest in the morning, I felt like I was missing my time for optimal production, which wasn’t good. The odd thing (and something I should have paid more attention to) was that I hadn’t changed anything with my sleep habits and was still going to bed at the same time; I just couldn’t wake up in the morning. Another thing that should have been noticed sooner was how often I would fall asleep on the couch during the day around three, usually while reading, sometimes while watching TV. Occasionally in the past this would happen to me, but never this frequently. So, there I was for several months, unable to wake up in the mornings, unable to write, and unable to say awake during the day. It should have been enough for me to realize something bad was going on, but I didn’t, and the next thing that began to happen was I started to become very forgetful. So forgetful in fact that I would leave the oven on when going to bed, put a tea pot on the stove and then take a shower, forget to put away perishable groceries, and order meals to go from restaurants while out with friends and never bring them home -- or if I did bring them home leave them in the car to spoil. Thankfully these were all pretty noticeable issues because most involved wasting money so I began to think about them as a sign that something wasn’t quite right. And then one day shortly after that (yesterday actually) I was sitting at my desk in the morning staring at the blank space beneath a new chapter in a novel I have been struggling to complete for five months, wondering if there was something I could be doing to help fuel my creative drive which seemed to be lacking so much lately. These thoughts led me to Google and without really thinking about it I typed in something like ‘foods to help creativity’ and the next thing I knew I was looking at a list of Brain Foods one should eat in order to stay mentally healthy. To my horror I realized I was not eating any of those foods. I also saw that many of the troubles I had been having with my writing, fatigue, and memory had direct ties to not getting the nutrition associated with those foods. The worst part of all, however, was my knowledge that the only reason I hadn’t been getting those foods was because I had turned into a lazy shopper after moving into my new place, a lazy shopper who stopped buying foods that would create a mess in the kitchen because he also hated to clean up (frozen pizza and quick noodle dishes was all I would buy as far as food went). It was a sobering wake up call. I needed to make changes. I needed to start buying real foods again and eating them. Cleaning up messes in the kitchen is better than staring at a blank computer page all day long, yawning, and wondering where the hell the drive to write went.

Paying attention to ones nutritional intake is one of the most important aspects of living with Crohn’s Disease. Widespread intestinal inflammation and / or widespread intestinal loss already makes it incredibly difficult to get this stuff when trying to put it into the body on a daily basis, so it isn’t hard to imagine how bad things can become when one doesn’t even make the attempt at consuming this nutrition.

My Surgery - Was it Really Five Years Ago?

2011-06-02T20:41:00.001-05:00

I have to admit, I’m a little shaken by the fact that is has been five years since my small bowel resection surgery. It just doesn’t seem possible. The event feels too recent. The time between it and now couldn’t have been longer than my entire high school career, yet here it is, five years later to the day. Even more bizarre, the surgery seems closer than many of the events that unfolded after it. Don’t ask me why, it just does. Take my car accident for example. That happened in April of 2008, nearly two years after the surgery, yet feels like something I have been looking back on for at least a decade. Same thing with my trip to Gettysburg a few months after the car accident and my employment as a security guard a few weeks after the Gettysburg trip. Both feel like such a long time ago, yet are dated halfway between the surgery and now. And then there is the week long lung transplant evaluation that Jen underwent in St. Louis that ended a few days before my surgery, our drive home literally a race against the clock because I had important pre-surgery blood work that need to be done the next day. The two moments in time were closer together than weekly episodes of a season TV show, yet feel as if they existed in two separate time periods (two separate realities even). Why is this? How can the events that unfold over a constant singular pathway -- that being time itself -- have such a mismatched sense of occurrence within my memory? It doesn’t make any sense.

Crohn’s Disease Tip - Don’t Drink With a Straw

2011-05-10T08:09:00.000-05:00

I know what you’re thinking: this is a joke right? I know because I thought the same thing when my doctor suggested it five years ago when I told him that it was becoming very hard for me to eat out at restaurants without having problems before the check arrived. I also know because of the look I get from other people anytime I suggest this, be it people who have Crohn’s Disease who ask for advice / tips, or just from curious people I sit down to dinner with at restaurants who see me remove the straw from my drink. Whatever the case people often think I’m joking when I share this tip with them, but the fact is that I’m not. Five years ago my doctor suggested I stop drinking beverages with a straw when out to eat, and ever since then my frantic desire to leave the restaurant quickly as troubles start to brew has decreased dramatically (in fact, I can’t remember the last time I had to race home from a restaurant, and I eat out at least three to four times a week). I also know that many of my fellow Crohn’s Disease victims who were skeptical at first about this working, but still tried it, now recommend it to their friends. Some have even thanked me for sharing it with them as if I could claim credit for such a simple discovery (I wish I could). Medically I have no idea why this helps so much but do remember my doctor saying something about a straw forcing a lot of air into the body which causes quite a bit of discomfort and pain in a person with Crohn’s Disease. What I do know is that it works for me and has made my life more enjoyable. In fact the only downside I have ever found is when trying to watch a movie in the theater and having to carefully sip at the giant cups of Coke they sell without spilling it all over myself (even a small is obnoxiously big). I also have to battle with waitresses sometimes about putting ice in my drink because if there is too much it is hard to sip at without a straw (I have very sensitive teeth). The only exception I ever make to the ‘no straw’ rule is when drinking a milk shake, but then I pretty already know the drink is going to give me diarrhea later so I carefully plan out such masochistic practices (I also sometimes use them to flush everything out if things get a little backed up).

“Mr. Director, I Need to Poop!”

2011-05-09T10:16:00.000-05:00

Okay, the above words never actually came out of my mouth while on the Abraham Lincoln: Vampire Hunter movie set down near New Orleans, but the fear of having to suddenly use the bathroom during those long twelve to fourteen hour shooting days was always present. Making matters worse was the lack of progress I made in the bathroom at the hotel before leaving in the mornings, my stuck up bowels having decided that if I didn’t have to start work until six then they too could hold off. It was very aggravating because I knew I had to go (day after day the pressure built up) but nothing would happen, and then it would be time to head out. Had I been home without the need to be in front of a camera at unknown intervals during the day I would have just gulped down tons of food that would clear me out, but while on the movie set that was the last thing I wanted to do. Eventually some poop did arrive. It happened during an hour long lunch break on Wednesday (five days into our time on set) and I was able to finish up before having to board the bus to head back to the various scenes we were working on that day. I didn’t rejoice, however, because I knew the little bit that I dropped into the portable bathroom was just a scouting party and that more would probably follow. Wrong. Rumblings were there, but nothing ever came of them. The fear they created was enough though to keep me in a state of quiet distress during our breaks, my eyes always glancing across the field toward the set of bathrooms that were located near one of the craft services trailers. Walking to those bathrooms wouldn’t have been forbidden, but it could have forfeited my spot in the next scene, which in turn could have made it so I couldn’t be in any other scenes that they shot later due to the continuity factor. Also, I never wanted to be far from the people in charge during the breaks because every now and then they would need a reenactor quickly for a special scene, one which would give you even more face time on camera.

In the end I made it through the movie shoot without incident. I also was somehow able to drive home without having to make a sudden mad dash for a toilet or rest stop which was a real blessing because for some reason every rest stop in Mississippi was closed and further north many of the exits were shut down due to flooding. Sadly knowing the outcome now doesn’t erase the constant state of fear I felt during the shoot, or the fear I will probably feel in the future at similar events. That is the trouble with this disease. Many will tell us to just not think about it, but that isn’t really possible when you pretty much have diarrhea on a regular basis. Instead all we can do is push beyond the fear and accept that something might happen while involved in whatever event we are taking part in and that we will deal with it when the time comes -- if it comes. Sometimes it doesn’t, and the only thing worse than having diarrhea during a major event one really wants to be a part of is sitting at home and not having diarrhea while everyone else takes part in that event.

Painfully Constipated for Two Weeks

2011-04-10T23:10:00.000-05:00

In the past I have talked about the painful ‘diarrhea traffic jam’ that my body will occasional suffer, a situation where I seem to have diarrhea trying to get around a stubborn patch of slow moving bowel. Such experiences are very unpleasant, especially when the cramps start to hit because they somehow feel more intense than usual and don’t let up until everything is pushed through which can take hours. Thankfully, up until two weeks ago, this didn’t occur with regular frequency and most often was the result of overdoing it with my banana intake (I use bananas to prevent diarrhea which would be a daily occurrence for me otherwise). Now that has changed. My bowel outflow has slowed to a near standstill, my trips to the bathrooms always seeming fruitless despite the painful signals to let everything loose. I haven’t even put a dent in the new toilet paper roll that I hooked into place on March 27, and while my wallet is happy about that, my body is not. Even worse I can’t shake the feeling that something bad is unfolding, something that will most likely require some invasive procedures.

It all began on Friday, March 25 in the early morning hours before the sun crested the horizon. I was jolted awake by cramps that normally warn me that I will be warming the toilet seat for an hour or so, and began the process of moving my sleep weary cats off of me so I could make my way to the bathroom, both of them groaning with displeasure at being disturbed. But then nothing happened. Everything was in place, the stage was set, but Mr. Diarrhea was a no show. Knowing I would not be able to get back to sleep I went into the kitchen and made coffee and began my daily writing, the discomfort of the cramps making it somewhat unpleasant to be sitting at my desk. Thankfully I knew they would be gone soon especially once I began adding coffee to the mix. Wrong. The diarrhea never came. I still suspected it would, however, and because of this cancelled breakfast with my Mom that morning (we get together every Friday) because I was hesitant to begin the forty five minute car ride to the restaurant. Actually, it was the drive back that really freaked me out because I knew once I ate something the diarrhea would probably start to flow. Wrong again. No diarrhea. I went through the day without ever really needing to use toilet paper, though I still went through the motions out of habit every time I sat down on the toilet and attempt to squeeze stuff out.

Saturday was pretty much the same only with a sleepless cramp filled night added into the mix. Making it even worst I had a get together planned with my reenacting buddies, and while I wasn’t worried about having to go back and forth to the bathroom at the get together since it was in the house I live in, I didn’t like feeling uncomfortable during it, or the lack of appetite I was suddenly suffering given all the good food that was present. Sadly I couldn’t do anything about it and pretty much watched as all the yummy snack dishes were gobbled up by everyone but me -- I did pack in some chips and salsa but not nearly as much as I would have liked. And then the back pain began. It hit while I was watching a movie that night and forced me to lie on the floor with a pillow and heat pad under my lower back. It was awful. At one point my cats even got involved and started pressing on my stomach, I’m guessing in an attempt to break up the mass that had gotten caught in there (it is my belief that cats understand when something is wrong and will try to help). Eventually I ended up going to bed, but didn’t have a good night.
Sunday once again found me suffering the diarrhea cramps but lacking the diarrhea. I also felt completely filled up and noticed my pants were very tight when getting ready to head out to the grocery store (I really needed to restock my kitchen). Once finished with that I went to lunch with some friends and had a small sandwich. I wasn’t particularly hungry and felt completely bloated, but knew I had to eat something. I also was kind of hoping that being out and about would cause the diarrhea to race toward the light, its knowledge that it would be causing a major inconvenience motivating it into action. I wouldn’t have cared; I just wanted everything out. Of course nothing happened. The trip to eat was uneventful and I soon found myself back in the apartment, my body slowly feeling more and more uncomfortable until it finally hit at eight o’clock. I was in the middle of doing laundry, the house that I have an apartment in completely empty as my friends downstairs went out to see a movie. One moment I was just sitting on the couch watching TV waiting for the clothes downstairs to finish, the next I was hobbling toward the bathroom as a powerful cramp overtook me. I didn’t make it. The cramp became so overwhelming that I leaned up against the wall and slowly slide down to the floor. It felt as if something were trying to push its way through my right side. A few minutes later I was able to stand and made it to the toilet but nothing happened. I got up and then went to the floor as a second cramp overtook me. Still nothing would come once I was back on the toilet. Eventually I got to my feet and hobbled into the family room to lean against the wall, tears falling from my eyes from pain, hands clutching my lower stomach. The next cramp forced me to my knees and was so bad my body started shaking. I thought about going to my phone to call 911 but then the cramp passed. And then it came back, knocked me on the floor again, and then passed. On and on this went for almost three hours until finally I forced out a clump of very hard poop and the flood gates opened. Three times I filled up the toilet bowel passed the water level with diarrhea, and once it was finished I felt as if my insides had been hollowed out with sandpaper.

Since my surgery nearly five years ago I have never been in such physical pain and to make matters worse nothing has corrected itself. I haven’t had any moments of extreme pain like I did that Sunday night, but I also haven’t had any regular bathroom moments and no diarrhea even though I haven’t eaten any bananas. Normally the no diarrhea thing would be a cause for celebration. My fear, however, is that a blockage has started to develop. After all, in an attempt to prevent another painful night like I had, I have been eating prunes and dates and raisin bran cereal everyday, and barely touching my anti-diarrhea foods like bananas and breads. Because of this I should be suffering diarrhea like crazy, but instead I have the bloated constipate feeling all the time and only go to the bathroom every few days with little relief. It isn’t good.

I Don’t Mean to Eat and Run, but . . .

2011-03-16T16:26:00.000-05:00

Does anyone else out there with Crohn’s Disease and / or a shortened bowel due to surgery have this compulsion to quickly start heading home once the food is finished when eating out, either at a restaurant or another person’s house? I pretty much battle with this urge every time I eat someplace outside of my apartment, a gentle panic setting in and growing as the minutes tick by, my mind knowing that even though I feel fine at that particular moment things could change quickly once food enters into the equation. It is an urge I hate giving into mostly because there usually is a social reason or event behind the journey to the restaurant, one that I really want to be a part off (if I didn’t I could stay home and eat a pizza while watching TV, my toilet a mere four steps away). I also don’t like calling attention to the disease when in certain types of company because it inevitably leads to one of two things: either statements about how I should go to the doctor and get fixed (if possible I would have done it already), or statements about how I’m too nervous and need to stop making a big deal out of my silly stomach issues (ugh, head shake). The worst part about giving in, however, is that about sixty to seventy percent of the time nothing happens and I realize I did end my time out with friends or family for nothing, which in turn makes me feel like the disease is winning. Other times I am so relieved to have made it home in time that I tell myself it was worth it, and that I’d gladly cut nine evenings short if it meant on the tenth one I didn’t have to put the peddle to the metal in an attempt to get home without ruining another pair of pants.

So, can anyone else identify with this?

Motion Sensor Toilets - I Hate Them!

2011-03-03T17:14:00.001-06:00

Does anyone else out there hate all the motion sensor toilets that seem to have been installed in the bathrooms across America (and maybe the world)? At first I thought they were a good idea, but now not so much. The problem is how sensitive they seem to be. Every little movement while sitting there sets it off. Even worse many have an incredibly forceful water system, one which gives your backside a good wet down if you remain seated -- though this may be a good thing if you are having one of those explosive diarrhea moments (more on that in another post). Then of course there is social factor. When in a public bathroom with diarrhea I hate drawing attention to myself (sometimes this is unavoidable due to the unpleasant aroma that gets released), but when sitting with one of these overly sensitive motion activated toilets it’s like having an announcer inform everyone of your presence. “And if you’ll look over here at stall number two I have a young man sitting atop me who just finished squirting out a sandwich he shouldn’t have eaten for lunch . . . oh wait, what’s that, looks like he’s still going, boy talk about stamina! I haven’t seen anyone poop like this since working that I-55 truck stop outside of Springfield.” This only gets worse if there is a line. The pressure when people are waiting for you to finish is bad enough without a self flushing toilet, especially if you can tell they are desperate as well, but when you have a toilet that comes to life every time you shift positions and makes the person waiting think its finally their turn . . . well, that’s just humiliating.

Anyone have any suggestion or comments about this? I may start carrying a piece of cardboard and some tape with me wherever I go just so I can cover up the motion sensor every time I have an emergency.

Eggnog - Like Doing A Colonoscopy Cleanout!

2010-12-24T09:02:00.000-06:00

As many of you know I’m not one to simply eliminate foods from my diet because they may cause diarrhea, and instead like to mix and match things when I eat in an attempt to find good combinations that help prevent diarrhea so that I can still enjoy foods that most people with Crohn’s Disease religiously avoid. For over three years now I’ve been successful with this, my experimentation with different combinations having helped to make it so I can pretty much eat whatever I want whenever I want just as long as I properly prepare (this really helps when I go live outside for a few days during my Civil War reenactment weekends). Of course there are times when this doesn’t work so well and I do find myself almost crippled with gastrological pain and then running back and forth to the bathroom for an hour or two, my butt eventually feeling as if it’s been crapping pinecones the entire time. Thankfully these moments aren’t as common as the ‘oh look, I ate this and nothing bad happened’ moments that I enjoy so much, which is why I won't stop eating those foods, that was, until I decided to try drinking eggnog earlier this month.

All my life I have loved eggnog and never had any troubles with it, my body able to guzzle glass after glass of the stuff -- usually with a little nutmeg sprinkled on top -- without any negative consequences. Then in 2005 my Crohn’s Disease became active after having been in remission my entire life and in 2006 I had the surgery that removed a good chunk of my small intestine. After that I suffered for quite some time as my body seemed to liquefy everything I ate right away and instantly squirt it from my butt until I finally found a new doctor who helped me with the food combination plan and got me started on vitamins that I didn’t know I should have been taking ever since my surgery. This was the summer of 2007. That Christmas I had some eggnog and got hit with some really bad diarrhea while at my uncles house on Christmas Eve, but I didn’t make the connection between the two because I hadn’t really been following my combination diet plan for a few days and was eating really exotic holiday foods that my body wasn’t used too. After that I didn’t have any eggnog during the next two Christmas seasons because my family just never bought any -- my family only really likes one brand and it was never in stock for some reason. This year, however, when living on my own again I decided to start drinking it again.

I was coming home from school when the urge struck to pick up the eggnog, my mind deciding upon this after I remembered that some Christmas movies were going to be on that night and that eggnog would be the perfect mood setter. Having not consumed the stuff for a few years I made a joke on my Facebook profile about doing an eggnog experiment to see how my body would react, results pending following a good nights sleep. Well, the results came much quicker. Thirty minutes after drinking several cups -- the stuff was delicious -- I felt the cramps hit and raced into the bathroom where everything just gushed out of me. It was the worst diarrhea I had had in months and felt just like a colonoscopy cleanout. At one point my downstairs neighbor even sent me a text message asking if I was okay because he heard the toilet flushing like crazy. I went down to talk to him after I was finished and told him what had happened. He laughed and told me that eggnog was like a natural laxative.

Of course being me I didn’t sign a surrender agreement to the eggnog at that time and have spent nearly a month trying to see if I can buffer the effects of drinking it with things like bananas, bread, applesauce, etc, and have tried different brands. Each time the same thing happens. I drink the stuff and end up in the bathroom within an hour. Because of this I have made the decision to forgo the pleasures of drinking eggnog this holiday season while at parties. It just isn’t worth it. Even when alone in my apartment I don’t want to experience stuff like that and got rid of all my bottles of the stuff. It is awful.

Anyone else have this experience with eggnog?

I'm Back - Quick Update

2010-12-03T20:19:00.000-06:00

Okay, I really can't believe how long I let this blog go without a post. I didn't mean for that to happen. It was the back-to-back Civil War reenactments that did it. All of September and half of October saw me spending the weekends living outside around a campfire, doing battles for the public, and talking about the war itself all day long to all those that were interested, which, needless to say, wore me out. On top of that I was working on a new novel (one that will hopefully be published in the near future) and writing horror movie and book reviews like crazy for my main blog given that Halloween was drawing near. In November I planned on coming back to the blog, but then things just kept distracting me and before long November was gone.

Now I'm back and am happy to report that I haven't suffered any major Crohn's Disease problems since my last post. There has been dirrehea -- that's a given -- but it never seemed catastrophic, nor did get in the way of anything, which is great. Hopefully this will continue, especially with the holiday season upon us. If not, well then I hope all the houses I visit for friend and family gatherings have festive bathrooms.

Painful Morning

2010-09-24T07:37:00.000-05:00

Wow, I really don’t know what happened. Yesterday things started to feel a bit weird when I went to school and stayed that way during class -- it was a fullness feeling, but one that wasn’t really painful, just noticeable. An hour later, however, while on the road I started to feel the first few stabs in the right side, followed by bubbly noises which told me diarrhea was on the way. Thankfully it wasn’t a ‘find a bathroom now’ emergency, just a ‘be ready for a bathroom sometime in the near future’ notice, so I was able to make it back to my apartment in time (my exit was also closed, so I had to go a half hour out of my way, which would have really been bad had it hit right then and there). Once home I treated my evening as if it were a normal one, which for me means making a pot of tea and sitting down with a book. I also needed to download a few reenacting videos onto my computer in order to get my camera ready for this weekend -- I will be up in Wisconsin this time around -- which I set up while the tea was brewing. While doing all this the knowledge that I would be having diarrhea soon was always in the back of my mind, and occasionally in the front of my mind when I would get one of those crippling cramps -- you know the type, the ones that just stop you dead in your tracks and refuse to let you focus on anything but the pain. No diarrhea came, however, which worried me, because, given the pain I was feeling, I now knew this was going to be one of those painful ‘normal bowels first, followed by explosive bowels’ moments (in the past I have called this a Diarrhea Traffic Jam). By eleven o’clock I was starting to wonder what the hell was going on inside my body and laid down on the couch to watch TV -- I wanted to go to bed but had a feeling I would be getting up many times within the hour, so instead just stayed on the couch to wait it out while watching TV. Still no diarrhea came and eventually I went to bed, my mind thinking I would probably wake up an hour later and run to the bathroom.

WRONG!

Instead I slept the entire night without trouble and woke up at five like normal, my mind ready to start my day. A second later I was clutching the back of the couch, the pain in my right side and lower bowels so intense I couldn’t move. Once it passed I decided against making my morning pot of coffee and just headed into the bathroom, but once again nothing arrived. I knew something had to be in there, however, and just waited, my hands often reaching forward to grab the edge of the bathtub when the pain got really bad, my mind trying to will whatever was blocking the diarrhea to get out of the way before my bowels just exploded from the pressure.

It took nearly twenty minutes before the perfectly normal bowels finally worked themselves free, during which time I experienced some of the most intense pain I have ever dealt with following my surgery over four years ago. It literally felt like someone was reaching into my lower abdominal region and squeezing my intestines, their fingers trying to force out the thick masses of poop with no avail. Once those bowels were finally out of the way the diarrhea made an entrance (exit), and kept filling the toilet bowl. It never seemed to stop and by the time I was finally finished my lower abdomen had actually sunk in about an inch (you could visibly see it), probably because the intestines were finally hollowed out again.

Now I feel fine, though a bit worn out. I have no idea what happened yesterday to cause such misery but have a feeling I may have been partially to blame for it since I have been preparing myself for another long drive this week, which means I have been eating bananas, bread, yogurt and applesauce like crazy in an attempt to prevent any unpleasantness during the three hour car trip. This plugged me up something awful and then, like an idiot, I ate an entire pot of cheesy pasta and then an entire frozen pizza two meals in a row, both of which have been flagged as ‘may caused unpleasant bowel troubles’ items, my mind thinking that will all the binding foods I had eaten my body could handle anything else without trouble. Big mistake.

The only good thing is now I feel completely cleaned out, sort of like after a colonoscopy prep, which means living outside this weekend shouldn’t be too much of a problem, especially if I eat one or two bananas during my first meal to act as a buffer for everything else, and then take it easy on the amount of foods I actually eat. I will probably stay pretty hungry for most of the weekend, but that will be okay if it means I get to stay out of the portable bathrooms, and have a nice easy drive home Sunday evening.

Then again, I will be in a State known for their sausage and cheese, the first of which might cause some problems (hard cheeses never do for me, so that will be okay). I may not be able to resist. We shall see.

Why Only One Toilet?

2010-08-19T09:49:00.000-05:00

This drives me crazy, as it does many other people I have talked to, even ones without Crohn’s Disease, yet for some reason it seems to be the standard design when putting together a men’s bathroom. ‘What standard design?’ you ask. The ‘one toilet, two or three urinal design.’ I know many of the men out there have come face to face with this terrible, yet popular Men’s Room setup, and chances are it has happened to you when in the middle of an unscheduled cleanout. Sometimes things work out okay, you rush in, find the stall empty, sit down, release the angry hordes, and leave without a problem, but more often than not you either have to wait for someone to finish, or are conscious of the person waiting for you to finish, almost as if bowel troubles are contagious like the yawn. It is very frustrating. Why not put in more toilets? They work just as well as a urinal for those that need to do nothing more than pee, but at least they are there for those that need to crap as well. It just makes more sense to me. If you are designing a bathroom to be efficient why not put in a device that makes it more efficient?

Diet and Medications - Trying to Find a Good Balance

2010-07-22T10:23:00.001-05:00

I’ve gotten some emails recently asking why I discount medications when dealing with Crohn’s Disease, which isn’t something I do, but apparently some have come to believe this due to my writings. Let me be clear, I am not a ‘heal Crohn’s Disease through diet’ person. This is a real disease that requires real medical attention, one that has no cure, just maintenance plans. At the same time, I do feel that many doctors are too quick to prescribe a set of medications as if there is a rule book that says ‘if you have Crohn’s Disease you should be taking this and this and this’, which, many of us know, isn’t how it works. Crohn’s Disease varies too much from person to person for there to be a standard medical treatment. Instead doctors need to treat each case individually and really get to know their opponent before deciding on a place on attack. One also needs to get to know their own body and figure out what the right balance is. Diet and medications need to be combined in a way to provide the greatest quality of life for a person with this disease. The effects of medications need to be looked at too. If one if going to try the immune suppression route they need to realize that they will probably be on those immunosuppressant for the rest of their life because, according to many experts, once you suppress the immune system for a period of time it will come back fighting if one ever lets it become unsuppressed, and with Crohn’s Disease, that can mean serious flare-ups. Unfortunately with many this makes them feel as if the medication didn’t work and they quickly try to find something else, and then something else, and then something else, which in turn can have devastating effects on the body.

That said one must also not forget the importance that nutrition and diet can play. A big problem with Crohn’s Disease is that the immune system kills off a lot of bacteria in the intestines which makes digesting food difficult, which then further irritates the lining of the intestines and causes diarrhea. A good way to counter this is by putting the good bacteria back into the body to replace what was killed off. I use yogurt, others may need acidophilus pills or some other form of replacement depending on how their body reacts. The way one gets this good bacteria isn’t as important as the fact that they need this good bacteria if they want foods to get the best digestion possible. One also needs to give the body adequate tools too keep the intestines strong. This means vitamins and sometimes in heavy doses because many of us don’t absorb them the way a person who isn’t sick does. If one is just taking medication to keep the disease in check but not providing vitamins and nutrients that will help keep the intestines and body strong, then those medications aren’t going to be as useful and one is still going to still deteriorate. This is why I try to tell people to understand their disease. Arriving at the diagnosis of Crohn’s Disease is just the first step. From there one needs to learn what type of Crohn’s Disease they have (there are five major types with many subcategories, many of which behave differently and require different forms of treatments), and what type of diet plan they need to stay healthy (not just diarrhea free, but healthy as in cells are able to rebuild themselves, etc -- I almost died from this sort of complication in 2007 a year after going into remission), and what type of medications will work best with the least amount of damage to the rest of the body.

Bottom line, don’t let a doctor start you on a standard Crohn’s treatment because there is no such thing. Everyone’s body and disease is different and needs personalized attention. If a doctor can’t handle this, then maybe it is time for a second opinion. Also don’t let them recklessly try different treatment options without a care in the world. Yes, trial and error may need to be necessary when treating your disease, but make sure it is a calculated trial and error and not a ‘I’m going to throw darts at a treatment board and see what I hit’ trial and error.

Does Caffeine Bother You?

2010-07-18T08:12:00.001-05:00

I know caffeine bothers a lot of people with Crohn’s Disease or shortened bowels, which in turn prevents them from drinking some really tasty things like tea and coffee. Even worse, having to avoid tea forces one to avoid all the healthy benefits the drink brings the body, some of which are even good for Crohn’s Disease because of the way tea can sooth intestine inflammation (I drink tea all the time, so maybe this is one of the reasons I don’t suffer as much as some of my fellow Crohn’s Disease victims). Anyway, I just wanted to share a tip I heard from a fellow tea drinker, one who runs a loose tea shop. They were talking to a person about the tea they drink at night and how to prevent the caffeine from keeping them awake and simply told the person that most of the caffeine in a tea leaf is released in the first 30 seconds of brewing. Because of this they suggested the person start brewing their tea normally, but then, after thirty seconds, dump out the tea and pour fresh hot water over the tea leaves, and brew it for the recommended time -- usually two to three minutes for black teas, one to two minutes for green teas. By doing this they have, in a way, decaffeinated their tea. It still would have some caffeine in it, but not the same amount as a normal cup, and shouldn’t pose a problem to the person who was trying to sleep. The same is probably true of those who have intestinal issues with the caffeine. I myself have never tried this because I don’t have problems with caffeine (I also drink tea by the gallon so many are surprised by this), but I suggest others who do try it, especially if you enjoy tea but have had to cut back. Given all the healthy benefits of the drink, it really is something you don’t want to miss out on either, especially since they now think tea helps prevent colon cancer which is something people with Crohn’s Disease have a greater risk of getting.

When Poop Has an Identity Crisis

2010-07-14T06:53:00.000-05:00

Don’t you hate it when this happens? You feel like you’re going to have diarrhea and things move at about that speed, but then everything is so clumpy and sticky that it is more like a simple loose bowel, one that had a little bit too much water with its meal and now is racing for the finish line while carrying an extra load. Even worse, it’s hard to get out. You sit there moaning and groaning while this stuff is running toward its release but then at the last second it freezes up and decides to take a step back and think about things, maybe even get a second opinion. Some of these clumps even try to back up, like a kid on a high dive that chickens out. I have no idea why this happens but it is so frustrating. Thankfully it isn’t too painful, just messy and time consuming.

Diarrhea Before Marching in a Parade

2010-07-04T10:18:00.000-05:00

Getting hit with diarrhea before an event where you will be the focus of hundreds of people’s attention for an hour or more is a scary thing because it fills your mind with the horror of having to race away in the middle of the event and find a bathroom, all the people watching having no idea what is going on or why (for some reason I had the vision of a theater actor on stage getting hit with diarrhea in the middle of a play -- wouldn’t that be a nightmare). This horror is exactly what I felt yesterday as I drove a half hour into a town where my Civil War reenacting unit had been invited to march in a parade and felt the pains of diarrhea hit. Even worse, I had had a pretty good idea this would happen because for some reason I hadn’t been able to go to the bathroom for a few days, my body’s bowel schedule thrown off by a really bad night of diarrhea earlier in the week. Anyway, I knew the horrible constipated state would break that day, but hoped it would wait until after the parade. This wasn’t the case, however, and while driving to the house we were all meeting at I kept feeling the pains and knew things were going to get ugly. I also was hoping the place was easy to find and park at and the bathroom available right away, because all the possible bathrooms I had been driving by moments earlier had disappeared, long rows of Cook County Forest Preserves having taken their place (I will pull over and crap in the woods if needed, but will wait until there is no other choice and hadn’t yet reached that point).

Thankfully I did make it to my friend’s house in time, my parallel parking job in front of his house pretty bad and my tire almost busted from hitting the curb, and even better, his bathroom was available. There I had diarrhea for about thirty minutes, the entire time my mind and body hoping everything would clear out of my system before the parade started an hour later -- one which we would be walking too since the start was very close to his house.

Once finished I discovered most of my friends had arrived, all of whom showed concern over my familiar gastrological troubles. While talking to them I popped a few pink anti-diarrhea pills, and then changed into the heavy hot Civil War uniform and walked with them to the parade grounds, my stomach still feeling weird.

People were handing out candy before the parade started but I declined every offering, the fear the even one little bit of food would trigger something. I also didn’t drink much water, just enough to keep myself hydrated in the uniform.

Eventually the parade started. We marched for nearly an hour under the hot sun while people cheered us and everyone else and then once we finished we stood on the side and saluted a group of World War Two veterans who had marched a few spaces behind us (after all, it is the memory of all our veterans we as reenactors want to preserve) and then headed back to my friends house for a barbecue.

The diarrhea held off until then, which I was incredibly thankful for. I did leave the barbecue early though so that I could be at home in case it hit again -- which is did a few hours later -- but everyone understood. I also felt proud of myself for not giving into the urge to sit out the parade, my mind knowing that if I had and the diarrhea had held off I would regret it. It did hold off and now I have nothing to regret for that day. This is why I urge people not to live in fear of their diarrhea. There will come times when it will hit you at the worst possible moment, but living in fear of it will make it so you don’t get to enjoy the moments when it doesn’t hit, which isn’t good.

Diarrhea Pain Without Any Diarrhea

2010-05-31T23:14:00.000-05:00

Does this ever happen to anyone else out there with Crohn’s Disease or am I the only one tormented by this annoying problem? My guess is others suffer it too and hate it just as much as me, especially if it causes them to change their plans. With me these fake outs have become so common that I now never cancel anything and just keep my fingers crossed -- when I’m not doubled over in pain -- that it will be a false alarm. These false alarms have been a problem every since my bowel resection surgery, but really started to get out of control in March when I was in North Carolina doing a major Civil War Reenactment (I was also hit with some really bad diarrhea on the road during this trip, which I have written about). It happened each day about an hour before the battles were to start, battles which lasted about an hour themselves and involved quite a bit of marching to get too due to the size and numbers. Both times the cramps stopped me in my tracks and I started debating with myself about whether or not I would go with my unit to the battle or stay in camp, which was pretty close to some of the bathrooms. Both days I decided to go, my thoughts being I could always sneak off into the woods if I had to despite how unpleasant that would be (I know from experience). Thankfully this sneaking into the woods wasn’t needed and the pain disappeared before the battles started.

Unfortunately the false alarms haven’t stopped and making them even worse they seem to be happening at night quite a bit, often waking me up and making me curl in the fetal position while waiting for the moment, which never comes. It is very frustrating.

It also happened today not long before I had to go pick my parents up from the airport, which, as many probably realize, is not a situation you want to have diarrhea in. Once again the pains began about two hours before I was supposed to pick them up, and I actually did end up using the bathroom, but it was all normal, no diarrhea, though I expected diarrhea to follow thinking maybe things had gotten backed up a bit. That was five hours ago and still nothing, and the pain has faded.

I just don’t get it. Why does my body do this to me?

Note: for those that think it is just IBS (my family is included in this group) it isn’t, because if it were it wouldn’t be waking me up in the middle of the night.

Back to Regular Yogurt - Less Diarrhea This Way

2010-05-30T14:20:00.000-05:00

As some of you may recall several months ago I grew sick of eating yogurt every morning as a way of keeping my good intestinal bacteria at a healthy level (something that is a must for those of us suffering from Crohn’s Disease, and really helps at cutting down on diarrhea) and started drinking these yogurt smoothie drinks, which were really good. Sadly, however, I think they may be the reason I have been suffering more diarrhea than is normal for me lately, something which I’ve concluded further by the development of steady regular bowels these last several days while eating standard cups of yogurt. I’m not sure what it was about the yogurt smoothies that would have been causing so much diarrhea, and am pretty sure it wasn’t the dairy in them since I’ve never had any real problems with dairy just as long as I keep it in moderation, but have a feeling it may have been a lack of good bacteria, which in turn resulted in foods not being properly broken down and then racing through my intestinal track as if on a waterslide. I’m not sure why the smoothies would have less of this good bacteria than regular yogurt, but have a feeling it probably has something to do with the process in which it is manufactured. Whatever the reason, I have concluded that they were to blame after keeping an informal food diary, and am now back to eating regular cups of yogurt every morning. I am not, however, cutting the yogurt smoothies out of my diet completely and will see if combining them with the yogurt cups has any affect. In the meantime it is back to a cup of regular yogurt every morning, something which I know I will get sick of again (same thing with the bananas). At the same time I prefer the cup of yogurt to the painful diarrhea, especially if it hits when I’m on the road (this has been happening quite a bit lately and is driving me crazy).

Note: Quite a few people with Crohn’s Disease cut yogurt out of their diet because they are told to limit their dairy intake. Even worse, many online articles about Crohn’s Disease and IBD and even IBS tell people to stop eating yogurt and that it is only a myth that it is a ‘safe’ food. Many doctors, however, have started to disagree and believe that the good bacteria in yogurt will actually act as an anti-inflammatory agent in the intestines, and that consuming it on a regular basis will cut down on the amount of diarrhea a person with Crohn’s Disease experiences. Plus, most people don’t realize that the reason people with Crohn’s Disease have a lot of diarrhea is because the immune mistakenly kills off the good bacteria with the bad bacteria in the intestines. When this happens foods aren’t able to be digested properly which then causes a form of diarrhea. Further, having only partially digested food pass through the intestine causes irritations which then gets inflamed and causes more diarrhea. This is why it is good to eat yogurt. Replacing that good bacteria helps digest the food, which then will pass through the bowels in a more regular manner causing less irritation.

Diarrhea Traffic Jam

2010-05-27T10:50:00.001-05:00

Do you ever feel like your body is having a serious traffic jam within your digestive track? I’ve been feeling this quite a bit lately. It is like two separate forms of bowels are moving toward the same opening, the heavy, somewhat normal bowels in one lane, and the fast moving, angry diarrhea bowels in another. Making the situation even worse is that the heavy normal bowels are in front of the fast moving angry ones, and there is no way for the fast moving ones to get around. Because of this I get the really bad ‘heavy diarrhea is on its way’ pains which bubble up out of nowhere and pretty much stop me in my tracks, but then have to wait for the slow moving bowels to finish their journey, which can take a while and is painfully frustrating. I don’t know why this happens though and it doesn’t seem to make sense. How can you have two separate forms of bowels so close together?

Last night this happened to me and it was really bad. The diarrhea pain started around six while my little brother and I were watching a movie (he is home on leave from the army). All of the sudden I felt the pain, but the diarrhea wouldn’t arrive. I paused our movie several times and tried to go but nothing came coming out, but the pain would still bubble up and nearly topple me. Finally on my third trip to the bathroom the normal bowels came out. Behind it, however, I could still feel the diarrhea coming and ten minutes later I headed into the bathroom and it just exploded out, almost as if the pressure had been building and building due to the normal bowel back up. Of course, once that was all out it wasn’t the end because for some reason my body never gets rid of everything at once, I had to journey into the bathroom two more times to finish, the final time being nothing but a watery sludge. After that I still felt the diarrhea pains, but nothing was left and every trip was a false alarm.

Does this ever happen to anyone else?

Really Sharp Sudden Stomach Pain

2010-04-07T14:32:00.000-05:00

I must say, the pain I experienced the other day was the scariest pain I have felt in a long time, especially given how sudden it appeared. It all began Monday morning when I got out of bed. The night before I had been feeling fine and didn’t seem to have any trouble while sleeping -- the only exception being a cat that likes to stretch sideways rather than long ways when on the bed. In fact, even upon waking that morning I felt fine, but then, when I stood up, it seemed as if someone had stabled me right in the gut about an inch above and to the right of my bellybutton, which is a spot I have never felt pain before, but know is a common area for Crohn’s Disease troubles. The pain stuck with me for most of the day and made everything from walking to taking deep breaths to standing up straight nearly impossible. I also really needed to use the bathroom that morning but couldn’t push anything out because whenever I tried it felt like something was going to burst through my skin. Even worse, anytime I twisted it felt like something near the pain was tugging, which instantly made me think abscess, which, as everyone knows, can quickly turn into a fistula if not taken care of properly. Needless to say I was very panicked all day long, yet also a little optimistic because it seemed like an abscess forming would have been more gradual so rather than making a long, painful drive to my hospital’s emergency room, I decided to wait a few hours and see what happened, my fingers crossed.

Five years ago I made a similar decision, only this time it was one made without any knowledge of the destructive disease within my body -- something which was constantly on my mind this time around as I planted myself in my reading chair all day with Toby in my lap and waited. Back then it was upper back pain that first started out as a mild annoyance but soon turned into a teeth grinding life halting situation, one that pretty much prevented me from getting any real sleep for several months, my mind always thinking that it would just take one more week for the pain to go away and wishing I could project myself to that moment rather than being curled up in agony on the couch. The cause of that pain was the start of an abscess in my small bowel, one which was creating so much inflammation in the intestines that the tubes that take urine from the kidneys to the bladder were being squeezed, hence the upper back pain. Eventually, however, the abscesses pain became my main focus and after dealing with that for over a month it burst open and created a tunnel between my small bowel and bladder -- something which I was at first relieved about because the groin pain didn’t seem as sharp once everything had broken open, but then quickly turned into an agonizing day to day routine of having constant urinary track and bladder infections as fecal matter filtered out through the wrong end. The fact that the stupid doctors told me the brown chunky painful urine I was peeing was a result of the antibiotics killing whatever was causing the pain in the first place also helped relieve me at first, until I realized how idiotic their theory was (dropping below 100 pounds also made me realize something was still wrong though it would be another two months before my mother and I would seek out new doctors).

Again, this time around the cause of the pain was a mystery, but at least I knew it was most likely Crohn’s related and that if it got really bad I had a really good gastro doctor just one phone call away. Physically this knowledge didn’t really do much, but mentally it helped me get through those hours -- though I guess the idea that it could be a fistula forming again was pretty scary because the last thing I want to do is endure another surgery. Thankfully the pain did go away and hasn’t been back since. I’m not sure what it was but will be talking to my doctor soon about it. Unfortunately if it does return there isn’t much I can do about it, hence the reason my type of Crohn’s Disease is often referred to as ‘Surgical Crohn’s’ because that seems to be the only surefire way of putting this type back into remission (also because of how quickly this type of Crohn’s requires surgery -- most types of Crohn’s Disease take years to damage the intestines to the point of needing surgery, but Fibro Crohn’s will do this damage in a matter of months). So, fingers crossed that it was just an isolated incident, maybe a partial blockage that got knocked free when my cat started massaging my gut -- it felt better after that believe it or not and hasn’t been back since.

Fast Food Places That Don’t Bother Me

2010-03-27T11:22:00.001-05:00

When it comes to gastrological problems like Crohn’s Disease the general rule of thumb is to stay away from fast food joints because they often are thought to worsen the problems one faces, especially when that problem is frequent diarrhea. Like everything, however, there seems to be exceptions to this, ones which usually surprise people. For me one of the biggest exceptions to the no fast food rule comes from an unlikely place, one which even healthy people often associate with nasty gastrological problems, that place being Taco Bell. I don’t know why, but my body has no problem eating Taco Bell food. In fact, my body handles this food so well that I don’t even have to think twice about suggesting it as a place to stop when on the road with my Civil War reenactor buddies, something which they think is great because we all seem to be fans of their deliciously cheap food. Now, the only downside to this is that sometimes the food causes problems with my friends, and we end up having to make an emergency stop for them, which is something I often find very ironic.

I also don’t seem to have a problem with any of the breakfast items on the McDonalds menu, which was always a huge plus when I used to work security because the last thing I ever wanted to do at five in the morning when getting ready for work was prepare something for breakfast. Unfortunately the same can not be said about their regular menu, unless we are talking about their plain crispy chicken sandwiches (this goes for Burger King as well). Everything else and I am in the bathroom within an hour, the cheeseburger and fries having somehow tripped the ‘evacuate bowels’ alarm. I don’t know why, but this always happens, even if I’ve padded the meal with bananas and yogurt, which is why I have pretty much crossed them off of my Place to Eat list once ten thirty or eleven passes by.

Anyone else have fast food places they are able to eat at?

Time to Buy Health Insurance -- I Think?

2010-03-25T09:40:00.000-05:00

Wow, believe it or not, I didn’t realize that the health insurance bill that President Obama signed on Tuesday was actually the final step in allowing me to finally purchase health insurance despite my pre-existing condition, something that has continuously resulted in me being turned down by health insurance providers since 2006. One reason I didn’t realize this signing changed things was because I was still exhausted after my drive back from North Carolina where, as many of you know, I was taking part in a major Civil War reenactment, one which kind of cut me off from the outside world. The other reason was because I have grown tired of the health care debate, despite how significant a positive outcome would be for me, due to all the bull flying through the air thanks to the media and some of the really crazy tea party people. Now, being a historian I understand how important debate is when it comes to our government functioning properly and also know that our system is designed to be inefficient because that makes it extremely difficult for tyrants to take control (though apparently many feel this has already happened with Obama’s election -- or Osama’s election as Fox News liked to ‘accidentally’ say from time to time -- most of whom didn’t seem to mind all the civil liberties being taken away from the citizens by the previous administration), but this time around the debate just got silly. In fact, this got so silly I couldn’t even stand to watch the news stations anymore -- especially Fox -- my mind overcome with embarrassment, especially when wondering if our founding fathers could see what was happening. Ugh, it was ridiculous.

Now, however, it looks like things are finally about to settle down and, for the first time in four years, I am actually optimistic about sending out an application to an insurance company, something that I eventually stopped doing after the dozens upon dozens of rejection letters I received because I got tired of wasting the stamps. To make it worse I wasn’t able to qualify for the state run insurance that Illinois provides through Blue Cross Blue Shield because they kept asking why I wasn’t covered at work. The answer was simple, I couldn’t afford it, not on my less than nine dollars an hour paychecks, ones which would have been cut down by over two hundred and fifty dollars before taxes for the health insurance my company offered. Plus, my company had a habit of keeping my hours below 40 every now and then so whenever I did ask for health insurence they said I wasn't full time. It was a game we played for two years until I finally quit last year.

So, sending out applications to insurance companies will by my task for today and when the companies finally decide to cover me, because they now have to by law, I will finally stop having to live in fear of needing another major surgery but not having to pay for it -- or just a really expensive test.

Even My Own Family Doesn’t Understand

2010-03-24T09:56:00.001-05:00

Does anyone else have family members that just don’t get it when it comes to your disease, and then further they get mad at you when you get frustrated with them? I have been living with my parents ever since my divorce because my late wife wanted the apartment we were living in and I didn’t feel like living on my own right away because I was depressed. Because of this my Mother keeps trying to help me with my Crohn’s Disease but doesn’t understand that I know more about it than her and have been living with it for many years now. She also doesn’t understand that my Crohn’s Disease is different than the types her friends have because I have had part of my small intestine removed, which adds a whole new dimension to my disease. The fact that I also have a type of Crohn’s Disease that is very rare - Fibro Stenotic Crohn’s -- also doesn’t help. It is bad enough that very few people understand the specifics of the more common Crohn’s Disease types, and just assume you have a more advanced form of IBS, but when you have a type that is rare even amongst the Crohn’s community it gets ever more difficult. The worst part is that my Mother thinks that the diarrhea I have been getting is the same as the everyday diarrhea other people with healthy bodies gets from time to time. It isn’t, however. My diarrhea usually consists of undigested food that is so poorly broken down that I can sometimes tell what it is when floating in the toilet, which can be very painful to get out. When this happens things that help most people with diarrhea won’t help me, so when she goes and asks the pharmacist what her son should do about his diarrhea, one who probably doesn’t even know that there are different types of Crohn’s Disease, she is going to get information that might not be right for my specific case. But then what does she do, she gets mad because I won’t use the expensive stuff she bought, stuff I never asked her to buy in the first place. It gets so frustrating. My parents also get mad because I’m not on any medications, but don’t seem to realize that this is a result of my doctor not wanting me to be on any because of how ineffective they will be against my type of Crohn’s Disease. They think I am just being stubborn. They also don’t realize that there are certain things I just can’t change. My Dad always talks about how I used to be in really good shape when I was a gymnast and how I have really let myself go and am skinny and sometimes pale looking. He thinks I should work out like crazy and doesn’t understand that I can’t do that anymore, that is takes everything I can do just to stay over 100 pounds these days. Even worse, he thinks I just use my disease as an excuse and that I’m really underweight and malnourished due to how much time I spend on the computer, a computer which I make a living sitting at.

The thing that is the hardest to deal with is that I know they are only trying to help so I feel like a complete jerk when I get mad at them, but sometimes it has to happen. Time and time again I tell them that I really don’t need their help when dealing with this disease and just ask that they let me handle it, but they won’t. They don’t realize that the stress they cause when trying to help is counter productive.

I really don’t know what to do about it anymore. Now I understand why so many people with disease like this isolate themselves. It isn’t just because they are upset that they have a disease that can’t be cured, but because it just gets too exhausting trying to explain things to people all the time, especially those that surround them yet never seem to grasp the situation.

“Quick, Pull Over!” . . . Diarrhea and Road Trips

2010-03-23T09:02:00.000-05:00

Last week I shared with everyone my thoughts on a common fear many of us Crohn’s Disease victims face -- especially those of who have had chunks of bowel removed due to surgery -- being getting caught on the road with bad diarrhea (or just diarrhea in general). Most of my thoughts revolved around the fear of diarrhea and how many of us will spend more time worrying about those awful moments than actually experiencing them. Well, unfortunately, this time around, my worry proved accurate, though, like usual, it wasn’t as bad as I had feared.

My trip started with an hour long ride to my friend Bob’s house out near DeKalb Illinois where several of us were going to be meeting and packing into two vehicles to head to North Carolina. For most of the day I felt pretty good, yet at the same time was worried because for about a week I had been suffering painful diarrhea -- something which amazingly has not been very common for me ever since I learned that bananas and yogurt were good at binding everything even with the shortened bowel. Once at Bob’s house, however, things took a turn for the worst and I suddenly found myself in the bathroom sitting on the toilet, my mind wishing I had a seatbelt because the diarrhea was shooting out of me like a fire hose. Thankfully Bob’s son was late coming home from work, which is why this hit me while still at his house and not while on the first hour of our fourteen hour car trip, and after three mad dashes for the bathroom things seemed to calm down. In fact, things calmed down so much that I felt it was safe to eat a breakfast at McDonalds the next morning while driving through Kentucky though I did decide to skip the hash browns which I knew would cause problems and ate a banana before putting anything into my body, something which was risky but proved to be okay and we all made it to North Carolina without having to make any emergency stops for me, which was a huge surprise given the events at Bob’s house.

Car ride over I now found myself camping out in the middle of the North Carolina woods without any shelter aside from the blankets we carried on our backs; the only bathrooms being the brush and a small line of blue port-a-potties that always seemed to have a ten minute wait associated with them (my friend had a funny experience with these that I shall share later). Thankfully most reenactors are really good people and if I had had an emergency they would have probably allowed me to cut in line. This didn’t happen, however, and for the most part the weekend went pretty well. I did have a scare right before one of our major battles on Saturday. We were all digging trenches just like the soldiers did in 1865 waiting for the Confederate Army to attack, the hot spring sun bearing down on us, the spectators watching and wondering what was about to unfold, when I felt a familiar cramp develop. Rather than leaving the field and sitting by the port-a-potties (which probably would have been deserted all the way by our camp thanks to battle about to take place) and waiting for the diarrhea to come, I ate several pink pills that I had brought with me just to see if they would work -- this was the first time I have taken such pills since my surgery -- and went on with the event, my friends doing all the digging after that, and me just sitting with my rifle waiting. The pills seemed to work. No diarrhea that day and later that night I felt well enough to eat several biscuits with sausage gravy that tasted really good.

The next day was a similar story. No diarrhea, but I did eat some pink pills as a precaution before a long march and a battle, though this time I didn’t feel any cramps (I don’t know if this is wise, but did it anyway). Afterward we started heading home on our fourteen hour car ride back, my mind wondering if the fact that I hadn’t gone to the bathroom since Bob’s house on Thursdays (it was now Sunday evening) was going to bite me in the ass soon.

Well, things seemed to be doing fine. I made it through every state while everyone else had terrible bathroom moments -- all of them talking about the horrible waves of liquid crap that hit them suddenly as their butts met the wonderful cool porcelain toilets for the first time in several days, their bodies quivering as everything was unloaded. This all led to people joking about the fact that I was the only one without any bathroom emergencies on the way home. The jokes came too soon, however.

With two hours left in the trip I made a huge mistake. I ordered a milk shake at an ice cream shop. We only had two more stops to make, one to drop Bob’s girlfriend off at her place, another for me to pick up my car at Bob’s house and then head home myself, so I thought the milk shake would be okay. It wasn’t and after drinking about half of it I felt the sudden sensations all of us Crohn’s people (any people without Crohn’s disease) fear while in the car. I was going to need a bathroom.

Thankfully we made it to Lisa’s place in time. During my first trip to the toilet things felt pretty normal, just heavy, so I thought maybe this was just a ‘finally using the bathroom moment after spending four days without going’. It wasn’t, and after I cleared out a few normal bowels the flood gates opened and the diarrhea started coming. It was so bad that even after two trips into the bathroom I knew there was going to be more but told Bob we could start heading to his place. Five minutes later, before even leaving town, I was in a gas station bathroom, and then, twice on the hour drive back to his place I needed him to find a bathroom quickly. By the time we arrived to his place things seems to be okay again and I was able to drive another hour home without any trouble, which was good since there were no real stops between our two houses. Once home I needed the bathroom again several times (even now, while writing this, I have run to the bathroom twice) -- it just never seemed to stop.

So, there you have it. I worried about having diarrhea while on this trip, and then while at Bob’s house before leaving almost decided to cancel my part in this trip due to the diarrhea I was having before we even left, but then didn’t. I feel proud of myself for this, and even though I did get hit with diarrhea while on the road, am still glad I went. Now, if this diarrhea had hit in the middle of the car ride rather than with two hours left to go, I might be thinking differently, but everything seemed to work out fine, I got to every bathroom I needed and had no accidents. Plus I had a really good time on the trip, so it feels like it was worth it. I also know this won’t be the last time I get hit with diarrhea while on the road, despite all the precautions I take, so I figure I will just live with it and try not to fear it, because that last thing I want to do in life is let this control my decision making process.

14 Hour Car Ride Tonight - Living in Fear of Crohn’s Disease Diarrhea

2010-03-18T08:31:00.000-05:00

I know I’m not alone when it comes to freaking about car trips. After all, what is worse than being stuck in a car on an expressway far from anything resembling a toilet when the moment strikes -- and when Crohn’s people talk about the moment striking they mean that gut wrenching, intestinal squeezing, fetal positions inducing moment that arrives shortly before the gastrological water slide opens for business. Hell, even people without Crohn’s Disease probably fear this moment a little bit, but unlike us, they don’t have to constantly think about it because such moments aren’t as threatening -- kind of like worrying about a tornado outside of tornado alley during the spring. In fact, I think I read somewhere that the average person only gets really bad diarrhea about twice a year. Lucky bastards. Okay, just kidding. I’m sure they would trade in their lack of diarrhea for my skinny body any day -- I know, because I hear it from people all the time.

Now, like most Crohn’s victims, I carry an emergency roadside bag, one that contains a few pairs of underwear, an extra pair of pants, two things of toilet paper and some of the pink stuff. I also have been stocking up on bananas and yogurt and taking my B-12 like a good boy, all of which seems to help me when it comes to creating normal bowel packages deliveries (I love trying to come up with new ways of describing poop -- does that make me weird or just comfortable with my disease?). Thankfully I have never actually had to use anything in the first bag, nor have I ever gotten diarrhea while on one of these really long car rides that I frequently take due to my Civil War reenacting hobby, though I have on the shorter ones from time to time. Despite this, the fear still remains when preparing for these really long car rides.

Does this happen to you, my fellow Crohn’s Disease friends? Do you find yourself fearing diarrhea more often than actually having it? I do this constantly with every Civil War reenactment I go to, every date with Eva (my girlfriend), every college class, and every trip out to see my friends in DeKalb (about an hour away from my house in the middle of Illinois farm country). I fear getting diarrhea on these excursions, yet it hardly ever happens, and when it does, I usually never have a problem finding a bathroom, and then it doesn’t really last all that long. Of course I usually leave the bathroom before the all clear is given and find myself trying to locate another bathroom, but again, I usually find it in time and finish up quickly.

It is this last part that I keep telling myself, my words going something like this: even if you get hit with diarrhea during this 14 hour car ride, it won’t last very long and it will be over with soon. I also will be driving with people who know all about my problem and are very supportive -- they have spent countless hours waiting for me in the bathroom in the past (in fact, they are so kind that they take pictures of every bathroom I am in while they are waiting, ones I should post - they also will stand outside of a one person bathroom when I’m in really bad pain and will stop people from knocking on the door). Funny story time. I once was having really bad diarrhea on the way home from a reenactment and it triggered diarrhea in my friend because he was thinking about it every time we stopped and we both raced into a bathroom, our minds thinking there would only be one toilet and that we would have to fight over it. Thankfully there were actually two stalls, but my friend did tell me that if there hadn’t been a second toilet he would have used the urinal -- ha. I had a better idea. I told him if he had beaten me in and there had only been one toilet I would have used the women’s room, which I have done many times during emergencies (anyone out there ever have to do something like this?). The looks you get sometimes are amazing, and I once had someone threaten to call the police on me, but I explained the situation and it smoothed everything out -- no one wants a lawsuit because they denied a person with a medical condition a bathroom.

So, there you have it. I know I shouldn’t worry about the long car ride to North Carolina tonight, but I can’t help it. Because of this I have come to believe that those of us with Crohn’s Disease live with the fear of diarrhea more than the actual diarrhea itself, which is why I force myself never to cancel a trip like this. It is the only thing I can think to do, because I really don’t want to isolate myself.

Caught a Cold Virus

2010-02-23T21:01:00.001-06:00

It doesn’t happen often, maybe once or twice in the last five years, but when it does it seems more an annoyance than an illness and I wonder if that is due to the fact that I live my life with a chronic disease and really, when compared with a fistula or blockage or need for sudden emergency surgery, this doesn’t seem that bad? Does this ever happen to anyone else with Crohn’s Disease? Do you find yourself continuing with your everyday life with a cold virus that would put other healthy people in bed for a few days? Do you even take anything for it, or just let it run its course, your mind and body already sick and tired of the two dozen or so pills a normal Crohn’s regimen requires on a daily basis.

Irritable Bowel Disease - IBD - We Need a New Name

2010-01-28T15:37:00.000-06:00

Does anyone else wish the world ‘irritable’ wasn’t part of the name of our disease category? To me the word irritable is something you use to describe a mosquito bite, rush hour traffic or your mother in law, not a potentially deadly disease that can completely devastate your life (okay a mother in law can completely devastate your life as well, but that’s a whole different story). Anyway, I wish the category of disease that Crohn’s Disease had a different name, something that made it so people didn’t think it was just an inconvenient annoyance that we should learn to live with, because it isn’t. Sure, our disease might not be as deadly as some, but it is still nothing to laugh at, especially when you realize how destructive and life altering the disease can be.

Anyone have a better name for it, one that would make it so people would stop thinking we are all just a bunch of wimps that have bathroom problems from time to time.

Feeling Good = No Posts :-)

2010-01-16T19:59:00.000-06:00

It has been a while since I posted anything and that's because I have been feeling really good. I'm not sure why, but Crohn's Disease has been really far from my mind these last couple of weeks. Because of this I haven't really had anything to write about. I have had a few bathroom issues, but nothing major and my weight has seemed to jump up to 130 pounds, which is quite a bit for me -- for the last few years I've been around 110 - 115. Hopefully things will stay good.

Crohn’s Disease - Just A Mild Intestinal Disorder?

2009-12-29T16:35:00.001-06:00

This was another statement from a person with Crohn’s Disease (though they spell is Chrons Disease which always drive me crazy) that makes it seem like this debilitating illness is nothing more that IBS. The statement came up when I was researching whether or not Crohn’s disease was a disqualifying factor when it comes to military service. I know people who are in the military who are diagnosed with Crohn’s Disease can still serve, but wasn’t sure if people who already have it can join. The answer I got after some searching was NO and that it can’t be wavered by a doctor (certain conditions are on a person by person basis and can be wavered, but apparently Crohn’s Disease isn’t one of them). That didn’t really surprise me, though; the statement from the person with Crohn’s did. He said that he didn’t understand why someone could be denied entry into the military from a mild intestinal disorder. He said people get diarrhea all the time and that just because his body causes it a bit more often was no reason why he couldn’t serve his country. Had this guy done any research? Had his doctor done any research? Crohn’s Disease is not a mild intestinal disorder; it is a potentially deadly autoimmune disease, which is why the word ‘Disease’ is in there. Ugh, some people make me so mad. If diagnosed with something out of the ordinary why not do research on it. Why not learn everything you could about a complication that ones body causes?

Yogurt - A Very Important Part of a Crohn’s Disease Diet

2009-12-14T13:18:00.000-06:00

People seem surprised when I tell them this because most Crohn’s patients think that dairy is an enemy, and while things like milk other liquids like it may cause problems and should be avoided from time to time, yogurt should never be on that list. A big problem with Crohn’s Disease is the destruction of good bacteria in the intestines as the out-of-whack immune system goes on a killing spree. This good bacteria is essential to digesting food and getting the body the nutrition it needs from these foods. Yogurt is full of that good bacteria and can quickly replenish what the immune system destroyed, which in turn will help prevent diarrhea as food is properly digested and stop the slow demise of the body from a nutrition deficiency that most Crohn’s patients suffer from. Now, right now the yogurt with the good bacteria injected into is kind of a diet fad, one that has commercials all over the place, usually with Jamie Lee Curtis, but what they fall to tell you is that all yogurt has that bacteria in it and pretty much does the same thing as the overpriced product in those commercials.

One yogurt type food that I’ve fallen in love with is the Lucerne yogurt smoothie drinks, especially the Peach Passion Fruit. These things are loaded with all the benefits of yogurt plus contain many Vitamins like B-12 and Folic Acid, which many Crohn’s patients are deficient in (Folic Acid especially if you take Pentasa).

Another Funny Bathroom Story

2009-12-12T09:17:00.001-06:00

This one is a little different than the normal Crohn’s Disease bathroom story because it didn’t involve diarrhea and actually was something that occurred before I even knew I had Crohn’s Disease, though was a result of the disease.

As many of you know I am a Civil War reenactor, and therefore I often will go spend the weekend living the life of a Civil War soldier for people that come and watch us. During these Civil War days we also will put on a battle for the public, ones that usually take about thirty to forty minutes, plus about a half hour of waiting time for us as we get into position before the battle starts, and then, for me, since I do medical scenes as a wounded soldier, another half hour afterward.

Well, in 2005, as some of you also know, I developed a fistula between my small intestine and bladder, one that kept filling my bladder with fecal matter, which then gave me constant bladder, prostate and urinary track infections. Now, for anyone who has never experienced an infection like this, let me just say that there are two very unpleasant aspects to such infections, the first one being the pain, which often makes it feel like one is pissing out pieces of glass, the other the inability to hold in urine making it so you have to pee every ten minutes or so -- this was always embarrassing in school when I would have to get up three time to use the bathroom during a fifty minute class, and sucked when my brother and I would go see movies because I would miss so much.

So, there I am on the battlefield up in northern Wisconsin, leaning up against a fence where pretty much everyone could see me, when suddenly I have to pee and can’t hold it. So, I turned to another guy in my unit and told him what the problem was and asked if he could step forward a bit and block the spectator’s view of me so I could kneel there peeing up against the fence. He agreed and I was able to relieve myself without having to leave the battlefield or having any spectators see. But then, guess what, fifteen minutes later I had to pee again and once again did the same thing, only this time, right in the middle of peeing a canon fired causing me to jump and pee all over the fence, one which another reenactor then had to lean against without realizing what I had done later in the battle, others laughing when he later asked if anyone else noticed the fence smell like piss.

That isn’t the worst of it though. A few weeks later we were again on a battlefield, this one an open field with no cover whatsoever when I had to pee again, but didn’t have a fence and had spectators on all four sides of the field. So you know what we did, my unit formed a circle around me, all facing out, while I relieved myself, not once, but three times before the battle started, something which they all talk about to this day as one of the most bizarre moments in reenacting history.

Thankfully since my surgery I haven’t had problems with my bladder like that again, though now when I have bathroom problems my unit won’t be forming a circle around me and I won’t care if I have to leave the battlefield, because at that point finding a bathroom will be the only thing my mind can focus on. This happens occasionally in what I, and my reenacting friends like to call, an early opening of the gastrological water slide, and often finds me in a portable bathroom for hours at a time.

Pictures During Surgery

2009-12-06T10:04:00.000-06:00

Ever since posting my pictures on this blog, my website, and Facebook people have been asking me one thing: How did you get a camera into the surgery? My answer: I just brought it. There really wasn’t anything else to it. In October of 2005 when surgery became a possibility I asked the doctor if there would be a video made of any surgeries I had since Loyola was a teaching hospital. She said that they almost always filmed surgeries so that they could use them for teaching purposes and I asked how much a copy of the tape would be. She wasn’t sure about that, or whether or not they would make copies for patients, but did mention that I could bring a camera into the room and have a nurse take pictures, just as long as the camera was a disposable one that was still sealed in its bag, that way still being sterile. Surgery that month didn’t happen, however, because they decided my intestines were too fragile from the inflammation and would be damage beyond repair from all the handling that would be needed. Several months later, however, surgery did become a reality as doctors realized my intestines weren’t getting any better and the antibiotics I had to constantly take to prevent infections from the fistula into my bladder were slowly destroying my kidneys. Unfortunately I didn’t get all the pictures I wanted (ones of my insides and all my intestines) because apparently I caused them some bleeding problems while on the table.

No Title Even Comes to Mind for This

2009-11-19T22:58:00.000-06:00

Wow, I thought it was bad when regular people who don’t understand what it’s like to be in pain all the time comment on how lucky I am to have a disease that keeps me skinny, but then to have someone with Crohn’s Disease tell me that, well, it just leaves me speechless. Apparently this person suffers from Crohn’s Disease, but, putting it the way they said, ‘doesn’t benefit from the weightless like you’. Benefit? Really? Yeah, this was really a benefit when I got so sick from malnutrition that I almost had to be hospitalized a year after my surgery - so sick that my organs were starting to shut down and I was seeing black spots in my vision - so sick that my lips got crusty to the point where a medical student gasped when she saw me and had the doctor come in right away. Maybe the word benefit is being directed toward the wrong person. Maybe I should tell them that they are the one that is benefiting from not having the weight loss issue thrown on top of their Crohn’s Disease pain.

In fact, the only reason why I wasn’t hospitalized was because my wife was waiting for a lung transplant and I wanted to be near her, and understanding this, my doctor shot me full of B-12 and then ordered me to start taking 16,000 % of what a normal person needs in a diet and told me to come back in a few days to see if there was any improvement. Thankfully, there was.

I should find a picture of me that week. I have one; I just don’t know where it is. I’m so skinny that my cheeks are sunken below my bones and my clothes look like they were hand me downs from someone three or four times my size.

Evacuate the Building or Evacuate the Bowels?

2009-11-18T09:00:00.001-06:00

Yesterday I nearly ran into a situation that I’ve never thought I would experience, and that was having a fire alarm go off in a public building while stuck in the middle of a painful diarrhea attack. Thankfully this was a situation I nearly ran into, not one I experienced, though the fire alarm did still screw things up for me. See, I was heading to school last night, which isn’t too far from my house when I suddenly felt an urge to use the bathroom (this one was one of those surprise moments, one that hits without warning like a sucker punch to the gut). Knowing how close I was to the school I decided to just continue forward, park the car and race to the bathroom, something which I’ve been forced to do on several occasions and gotten quite good at. However, as I neared the school I realized this wasn’t going to be possible because the fire alarm was going off and everyone was waiting outside the building, something which I could not do. So, instead of waiting I hurried back to my car and drove home, my intestines finally being able to unload their unruly cargo five minutes later after I raced into the empty house. Of course this got me thinking, what would I have done if I was in the school, using the bathroom when the alarm went off? Had this happened to anyone else before?

I Think I Won the ‘Most Painful Moment’ Contest

2009-11-12T22:20:00.001-06:00

It wasn’t really an official contest, so I didn’t get any reward, but I did have the satisfaction of causing every person in the class to go silent, and, for some, a little pale. You see, during our break several of my fellow classmates started talking about some of the most painful injuries they have experienced. Most played sports in high school, so naturally the injuries were of the broken ankle, broken wrist category (the entire conversation started with a dentist office story though, so a few of these painful moments were teeth related). Anyway, after listening to this for several minutes I simply asked ‘Any of you ever pee out a piece of lettuce?” As you can image everyone went silent. I then followed up the comment with a story about the fistula that had developed between my small intestine and bladder back in 2005 and how for nearly a year I lived with the connection, which meant constant urinary track and bladder infections due to the fecal matter that was filtering into my bladder rather than going out through the colon. Of course, for some of this time I didn’t know about the fistula and I had a doctor who simply thought I had a prostate infection from a out-house bathroom at a Civil War reenactment, and it wasn’t until I actually peed out that piece of lettuce that I realized there was something really serious going on (actually I knew there was something serious a few days earlier when I filled the toilet with brown and black urine, but then was calmed down by my doctor who told me it was only the dead infection breaking away from my prostate now that I was on some heavy duty antibiotics -- yeah, if only that had been true). Once that lettuce came out, however, I had proof that my problem wasn’t due to the prostate and must have had something to do with my intestines, after all, how would you get lettuce in your urinary track?

Now, stating that I peed out the lettuce isn’t exactly accurate, and one of the reasons everyone in my class got really quiet and pale was because I explained in detail the events of that evening. First, it started with me having really bad groin pain, something that I had grown accustomed too, but not okay with (you never do). I also had to pee really badly, but for some reason only a little trickle would come out, if anything at all, which, of course, I thought was still a result of the prostate infection my doctor was insistent upon me having. After a while though as I was trying to pee it felt like something was in there so I simply lifted up the head of my penis and squeezed the tip between my fingers to look inside. Sure enough I could actually see something that was partially blocking my urethra, something that looked pliable, but which I couldn’t make out (the fact that I was even rationally thinking at that point has to be a testament to how accustomed I had grown to such discomfort). So, using a toothpick (not very sanitary but the only thing I could find), I was able to work an edge out that I then could get a hold off with my finger tips. Once I did that I pulled the object out, which wasn’t too long (I don’t think I have to mention how painful, yet also how wonderful this felt), but only because it was all curled up. Even then I sort of had an idea what the object was, but still went ahead and unraveled it. Sure enough, once I did that I was able to tell that it was a small piece of lettuce, one that hadn’t been fully digested (the color was way off due to it having gone through a lot of my small bowel, but the lines from the leaves were still present).

It was at this point that I was absolutely certain I had a hole connecting my intestine to my bladder, though I still didn’t know what Crohn’s disease or a fistula was, and for the next several days I started peeing into Tupperware containers so that I could bring it all to my doctor, who, even though I left a message about what was happening, wouldn’t see me for almost a week. Once I got there I had my bag full of brown and black object filled urine containers ready, but my doctor wouldn’t look at them because he said it would have been too easy for me to fake something like that (what was this, a drug test - why would I fake something like that?), and instead wanted to get a fresh sample from me, which I provided and which didn’t have as much stuff in it, though enough for him to recommend a catscan. It was this catscan that first brought up the idea of Crohn’s Disease because the guy running it saw the fistula. My doctor, however, didn’t think I had Crohn’s Disease because I wasn’t prone to frequent diarrhea and continued with his prostate infection theory. I didn’t stick with it though and eventually found a new doctor, one who knew right away that this was Crohn’s Disease even though that wasn’t his field (he was a urologist) and put me on the path toward finding a great gastroenterologist

Terrible Nurse Story

2009-11-08T13:21:00.000-06:00

Well I just finished reading a book that had a hospital scene with a mean nurse and while many people probably think this is cliché, I have to think the reason so many mean nurses appear is stories is because there are a good many of them out there, some of which I have run into. Now, don’t get me wrong, there are plenty of wonderful nurses out there, all of whom deserve a medal for all the crap they put up with, but at the same time there are some who you can just tell don’t give a rats ass about the patients they are dealing with, and while this in itself could be forgiven if they just did their job, there are some who can’t help but display their contempt of their work environment while working (actually this is true of any job, but with nurses it can be dangerous).

An example of this happened during my surgery recovery. It was the day after my operation and my surgeon wanted me to start walking around (this is typical if everything is going according to plan). Of course, as some of you may know, getting up onto your feet after having your abdomen sliced open can be one of the most painful experiences a person can face, so, needless to say I took a lot of time sitting up, first getting the bed into a sitting position and then twisting around to get my feet on the ground. My nurse, however, who had earlier tripped over my catheter bag (OUCH) didn’t like how long this was taking me and without warning took hold of my arm and forced me to my feet. My mother, who was right there, gasped and started to say something to the nurse, but then saw that I was going to fall and guided me into a chair where I was then given a bucket because I started to dry heave (also incredibly painful), which, naturally, the nurse found to be a little bit amusing and actually laughed. After that my mother asked her to leave the room, which she seemed to do gladly, and once I was ready, helped me to my feet.

I did tell my surgeon about this incident and he was horrified and I think the nurse got in trouble because she really didn’t like being in the room with me after that. I also probably wasn’t the most accommodating patient because having lived with Jen for so long I knew a thing or two about germs and constantly was telling all my nurses to use the hand sanitizer before touching me, especially after working with the patient next to me who had had a diabetic leg amputation that had gotten infected. They didn’t like this one bit, but I kept at it.

So, anyone else have a terrible nurse story?

Crohn’s Disease and College

2009-11-07T13:26:00.001-06:00

Was anyone else in college when their Crohn’s Disease first reared its ugly head? If so, how did you cope with it and how did it affect your college life? I only ask this because I was reading a book on Crohn’s Disease the other day and it talked about how one of the worst things about Crohn’s Disease is the fact that it usually first hits a person right in a middle of their college years, which in turn can stunt the advancement toward adulthood and independence due to the day to day gastrological troubles, uncontrollable pain, expensive time consuming medical tests, depression, and in many cases, debilitating surgeries. The fact that all of this hits when a person is living away from home for the first time only adds to the trauma, because, let’s face it, there is nothing worse than being medically scared while alone. Add in that the person might also be working to support their journey through school, and there just doesn’t seem to be any way one can survive such a struggle, and if they do, well, that is a journey others should look upon when needing inspiration.

I was twenty one when my Crohn’s Disease first struck and just finishing my first year of college (right after high school I worked for two years rather than going to college because I didn’t really know what I wanted to do with my life while waiting for my writing to start paying the way). Thankfully, however, I was living at home with my parents and going to a community school right down the street, so I didn’t really have to worry about my financial situations (I actually quit my job when it got really bad so that I could just focus on school and my health). Even then, though, school was really difficult, especially in October of 2005 when I had to have four major medical procedures performed (camera in the bladder, catscan, colonoscopy, and small bowel follow through), and at one point I did consider getting medical withdrawals from all my classes but then found out my health insurance wouldn’t cover me because I wouldn’t be considered a full time student. NOTE: I remember my Mom asking them about this and bringing up a scenario where a person ended up in a comma from a car accident and couldn’t go to school. The insurance lady told her that it would be better to stay in school and fail the classes than lose the coverage, which is what would happen -- yeah, and people think our system doesn’t need any work). Needless to say I stayed in school, and, somehow, managed to pass all my classes, though I didn’t do as well as I would have had nothing been wrong with me, though I did end up dropping out the following year do to my marriage (something I still shake my head about to this day as I once again struggle to complete my degree -- I should have done that first and then gotten married, ah, but that is a story I’ve told many times and don’t need to repeat here).

Anyway, I would be interested in hearing what other people think about this? Were you in school when Crohn’s Disease stuck and if so how did it affect your college career?

Foods That Help

2009-11-03T12:04:00.003-06:00

I have always noticed that Crohn’s disease patients and doctors will often focus on the foods that hurt, but never really focus too much on foods that help, some of which do such a nice job of calming the intestines that one is able to enjoy the foods that normally hurt. Does anyone else out there think this area of the Crohn’s Disease diet isn’t given enough attention? I never even realized there were foods that could help until I switched over to my current doctor, one who doesn’t ever go about eliminating foods from the diet, but instead tries to find combinations of foods that will help make things easier on the intestines, though he also knows that there are times when things will just be bad no matter what, and during those periods it is good to stay away from things that could hurt. For example, after experimenting for several months my doctor and I came to the conclusion that if I eat a banana and yogurt in the morning my chances of getting diarrhea seem to shrink (this is how I was able to drive back and forth from Chicago to St. Louis every few weeks while my wife was waiting for a lung transplant -- my body never once having a diarrhea emergency). Also, if I eat a banana and yogurt everyday I seem to be able to eat other things that would normally hurt, things like bacon, cheeseburgers, pizza, French fries, etc (though occasionally I still will have a problem even with the banana and yogurt, but these moments seem rare, whereas if I miss the banana and yogurt and then eat this stuff I will suffer for sure). I also am able to drink coffee every morning, which I load up with real cream and sugar and then regular Coke in the afternoons and evenings.

Now, there are times when I get really sick of these two food items and will go a few days without eating them, sometimes a week, which is when I will just get nailed with those horrible moments (moments like I wrote about in my last post -- in fact, it has now gotten to the point where my reenacting buddies will sometimes pester me for a week before an event to eat as many bananas as I can that week, and then will even go so far as to bring three or four to the event for me just in case I’m being stubborn and don’t bring them myself).

Has anyone else found things like this that help?

Funny Bathroom Moments

2009-10-23T14:37:00.000-05:00

Getting hit with really painful diarrhea moments before a long car ride is never fun, yet this time around it did produce a few funny moments. The incident happened last Sunday evening as my Civil War Reenacting unit was getting ready to leave Minooka, Illinois where we had just finished up our last event of the season. On the way out we all stopped at a restaurant in town to have dinner together, which is something we do after every event given that we are all best friends. While at the restaurant everything was going fine when suddenly I felt that familiar stab of pain that signals one of those surprise attacks, the kind that starts out with a lot of nauseating pain and then suddenly explodes from your backside like a rocket booster heading toward the moon (guys in my reenacting unit know this type of diarrhea as ‘fire hosing from the ass’, which is how I often describe it to them -- they are also familiar with my terms ‘gastrological waterslide’, which is what happens if I eat too much greasy food cooked over the campfire but don’t actually have full blown diarrhea, just material that moves through me quickly, and ‘the shit bus just took a turn on two wheels’, which signals trouble ahead later in the day). Anyway, this surprise attach hit just as we finished eating and once the pain subsided a bit I headed to the bathroom, which, of course, only had one stall. Thankfully no one was in it, but that didn’t make me feel any better because whenever there is only one stall and I’m having diarrhea someone is sure to come in and need the toilet as well.

Now, like most painful attacks that happen, this one came in waves and after the first assault I was feeling okay but decided to stay in the stall because I knew a second wave was coming. Unfortunately my other fear of someone else needing the bathroom became a reality as well as a kid charged into the bathroom and started rattling the door. Of course I told him I was in there, but unlike an adult who knows when they are out of luck, this kid decided to press the issue and started peeking through the crack in the door and asking me if I was going to be done soon. He then started rattling the door again and then peeked under the door to ask again, which is when I called it quits, flushed the toilet and headed out, my mind knowing I would be back in a few minutes and hoping to God the kid was done.

Well, I didn’t even make it back to the table when the second wave hit and I headed back to the bathroom. Thankfully the kid was nowhere to be found which makes me think he could have used the urinal, but oh well.

So, here I am, sitting there in pain as my body unloads another five pounds of crap when what do you know, another kid comes into the bathroom at a run and body slams himself into the door. Thankfully this kid was followed by his father (or some other parental figure who told him to always knock first and then apologized to me). Like the other kid he just needed the urinal as well and left shortly after.

Can’t get any worse right? Wrong.

While heading out of town I got nailed again and raced into a BP to use the bathroom. Thankfully nothing happened while in there and I was able to finish up and go back out to the car where my friend, who I had given a ride to the event to, was waiting (he is new to reenacting but has gotten to know me well enough to know that sometimes our car trips will take just a bit longer than everyone elses). Anyway, after that episode I figured I was good for the forty minute trip home and got on the expressway. Thankfully nothing happened there, but then, as we exited the expressway and got onto a road that would take us to my house, my friend felt the sudden urge to go (something that can be common for none Crohn’s people after a reenactment given the greasy food we eat and then the sudden re-introduction of normal food afterward), which, naturally triggered an urge within me as well. As our luck would have it the bathroom in the next gas station we went to had two stalls and one urinal, so the two of us didn’t have to fight over it. So there we are, both sitting in our separate stalls when I start reading out loud some of the funniest things I have ever read on a bathroom door. He too started reading some of the stuff he had on his side and we were cracking up. Now, what we didn’t know, was that someone had come in right after us and was quietly waiting to use the toilet as well and had been listening the entire time. We were so embarrassed, but couldn’t help but laugh about it as well. Thankfully there were no more incidents on the way home, at least not for me -- my friend still had an hour from my house back to his place but I think he faired okay.

Living With Crohn's Disease Commercials

2009-10-07T17:59:00.000-05:00

Has anyone else seen these commercials? I've been watching TV while waiting for a pizza to arrive and this commercial has already been on three times. Anyone tried the site they are talking about and seen what it was like? Is it helpful? If nothing else do you think this will bring more awareness to the disease?

"You're Lucky"

2009-10-03T15:51:00.000-05:00

Does anyone else ever hear this from people after explaining to them why you are so skinny? I get asked by strangers all the time how I stay so skinny, and almost alway tell them that I have an auto-immune disease that makes it hard to digest food and that I had a major bowel surgery that makes it even more difficult to digest food -- explaining this used to piss off my wife who would always tell people I just had 'stomach issues', which I once told her was like telling people her cystic fibrosis was just 'a shortness of breath' problem. Duirng my explanations I always mention that the disease is pretty painful and can be deadly if not managed properly, or just deadly if a complication arises, yet almost everyone I talk to still thinks I'm lucky. Even my mother sometimes slips up and says she wishes she had what I had so that she could stay skinny. I even had one person once grab some food off my plate that I didn't finish and say, "Hope I can catch a little Crohn's Disease". For a long time I wondered if maybe people just didn't understand what they were saying, but now think that they are actually telling the truth. I think people do wish they had this disease. I think people will do anything to stay skinny. Hell, just look at some of the surgeries people endure.

Crohn's Disease and Sunlight

2009-09-09T17:28:00.000-05:00

Okay, this is just a thought, but has anyone else ever given any consideration to how sunlight effects Crohn's Disease? I know the UV rays in sunlight are thought to suppress the immune system and I also know that Crohn's Disease is less common in the southern part of the US, so, could more exposure to sunlight help with Crohn's Disease?

NOTE: Some may think this conflicts with my post about getting diarrhea more often when I am out in the heat, but I think the diarrhea is more an affect of the surgery I had and less the Crohn's Disease.

Levaquin Warnings

2009-08-30T16:02:00.001-05:00

Has anyone else seen these commercials warning about the levaquin antiobiotic and the fact that it can cause tendon damage if people put too much strain on that tendon while on the antibiotic? Actually, the commercials aren't really warning people about this, but really trying to get people who have been on levaquin who may have had injuries to sue the company. They even go so far as to say that the warnings about levaquin and the possibility for tendon damage is new, yet these very same warnings were posted plain as day on the labels back when I was on the antibiotic in 2005. In fact I remember it clearly stated that the antibiotic was known to cause tendon damage and that it was a good idea not to participate in any activity that may put strain on those tendons, which is something I avoided, even going so far as to let my boss at work know I couldn't do any heavy lifting while taking it. Guess what, no tendon damage for me. The same could have been true of other people taking this if they would have just done a little research before popping the pill, but no, people have no clue what they are doing to themselves even when the warnings are right in front of them and then when something bad happens they get sue crazy and feel like a victim. It kind of reminds me of all these people that go in for cosmetic surgery and then are surprised when something bad happens because they thought it was a safe everyday kind of surgery. No. Anytime they cut into it is dangerous! Same thing with drugs. Anytime you put something into your body you should understand the risks involved.

Hot Weather and Crohn's Disease

2009-08-17T21:58:00.000-05:00

Has anyone else ever experienced a connection between hot weather and diarrhea attacks? I didn't realize it until recently, but many of the times when I have been struck with really bad diarrhea while doing Civil War Reenactment have been on days and weekends were the temperature was over 90 degrees. I also remember having really bad diarrehea while camping in Florida with my uncle (this was before I knew I had Crohn's Disease) and while out at amusement parks with my family.

Worried - Long Drive Tomorrow

2009-08-13T20:33:00.000-05:00

Anyone else out there ever get overly worried about long car rides? I normally don't because ever since starting my banana and yogurt diet two years ago I've rarely had any problems, and only once or twice got nailed with apocalyptic diarrhea while on the road, which is good because back when my late ex-wife decided she didn't want me living with her in St. Louis while waiting for her lung transplant I was forced to drive back and forth every two to three weeks to visit her, and if diarrhea had been a constant companion during those drives I would never have been able to do it (not that it mattered all that much in the end since she divorced me right after getting the transplant anyway, making me wonder if that was the plan all along). Now, tomorrow I have a three hour drive to a Civil War Reenactment. Normally I wouldn't be too worried about this, especially since this is just one of many three to four hour drives I have done this season, but last weekend I got hit with really bad diarrhea right after a reenactment and was forced to ask the driver of the car to turn around and go back twice so that I could run to one of the outhouses (thankfully they are very understanding about my situation). Since then things haven't really been normal with my body and I actually have not gone to the bathroom for two days, which is making me wonder if I am going to have another terrible episode tomorrow, my intestines just waiting for me to get halfway to the reenactment before opening up the gastrological water slide.

Crohn’s Disease - The Diarrhea Myth

2009-07-20T10:30:00.000-05:00

One of the biggest reasons I wasn’t properly diagnosed with Crohn’s Disease back in the summer of 2005 when I started to show the symptoms of a fistula connecting my small bowel and bladder is due to what I liked to call The Diarrhea Myth (having stupid doctors at the time didn’t help either but that is another issue). The Diarrhea Myth is, basically, the myth that one has to have frequent diarrhea to be suffering from Crohn’s Disease, which, on the surface, seems to be a pretty good idea since Crohn’s Disease is often defined as a disease that causes a person to have frequent diarrhea. The trouble is, this isn’t always the case, and the idea that Crohn’s Disease causes frequent diarrhea can be a dangerous statement, because it isn’t the Crohn’s Disease itself that causes the diarrhea, but the inflammation that Crohn’s Disease can cause and does cause in the majority of patients that leads to diarrhea (which, of course, means one can say Crohn’s Disease causes diarrhea). The trouble comes about when doctors use this to diagnosis Crohn’s Disease because now there are many people out there that have Crohn’s Disease that don’t have frequent diarrhea, especially those with fibro-stenotic Crohn’s Disease which doesn’t cause widespread inflammation in the intestines, but instead attacks a specific area like a guided missile until that area is severely damaged, which is what happened to me and which is why I can still count on one hand the amount of times I had diarrhea in 2005 (unfortunately I now have frequent diarrhea due to the surgery I needed to fix that damaged area, but that is a whole different story).

This lack of diarrhea is why I wasn’t diagnosed. In August of 2005 after I started peeing out brown stuff I had a cat scan performed, one which the technician looked at and decided showed evidence of Crohn’s Disease, which he wrote down on my chart. Because of this I suggested to my doctor that maybe I should see someone who specializes in intestinal diseases. He didn’t think this was necessary since he was sure my urinary track problems were prostate related and not intestinal related, but agreed to sign a referral for me to see a gastroenterologist, one who saw me the following week, one who laughed at the idea of Crohn’s Disease even though it had been written down on my cat-scan results. He laughed at this idea because when he asked me how often I had diarrhea I told him hardly ever and that I couldn’t even remember the last time it had struck. After that he told me the only reason the technician thought I had Crohn’s Disease was because I was skinny and that my original doctor was right, this had something to do with my prostate and that I just needed to give the antibiotics more time -- I had already been on Levaquin for a month, yet it didn’t seem to be working since I was still peeing a lot of brown stuff and still had the urinary track infection. He further went on to say that the antibiotic probably wasn’t working all that well because the inflammation in my prostate was making it hard for the blood to carry the antibiotic where it needed to go and suggested I start taking Advil with the levaquin (anyone who knows anything about the intestines knows that Advil is one of the worst things a person can take when there is intestinal damage because it is very hard on them). To make matters even more difficult my main doctor gloated about this, almost as if proving me wrong was his goal and then told me that he didn’t want to see me in his office for a month, which he felt would give the antibiotic time to do its job (any doctor who doesn’t want to see a patient who is in pain and peeing out blood and brown smelly crude should have his license taken away), which is what I did, because at that point my family and I still thought that doctors knew best. After a month, however, nothing had gotten better and I had grown even more skinny and had quit my job just because I couldn’t handle going to work and school at the same time, not when suffering those problems, all of which persuaded my mother to make a plea for help in front of her Sunday school class, a plea that got noticed by a man who worked in the medical field and told her that if I had had some sort of prostate infection, which was doubtful given my age, that the levaquin would have knocked it out within a week or two. Thankfully he knew a really good doctor at Loyal University who agreed to see me within a week, who, without even running any tests agreed with his medical student that I had Crohn’s Disease and referred me to a real specialist, one who has the option that the other doctor was so focused on me having a prostate infection and proving it because I would have been one of the youngest people to ever have a problem like that and it would have gotten his name in a lot of medical journals, which is something that still has the power to leave me shaken.

Crohn's Disease - No Cure

2009-07-16T08:48:00.000-05:00

Does anyone else out there with Crohn's Disease get bombarded with people telling you they know how to either cure Crohn's Disease or know someone who once had it but was cured? This drives me crazy and just goes to show how little the public actually knows about this disease. I think the biggest problem is that many people think Crohn's Disease is an intestinal disease, which in turn links it to food and therefore can be cured through diet. However, Crohn's Disease isn't an intestinal disease, but a disease that often affects the intestines and therefore can be impacted by the foods we eat. For instance, if I am going through a flare up and have an inflamed intestine then eating something like a carrot will probably be very painful and give me diarrhea, however, it is not the carrot that caused this, though many people will make that distinction. Furthermore, if I am not going through a flare up and eat a carrot is should go through without any trouble and won't cause a flare up because the flareup is a result of the immune system and has nothing to do with the intestines, that is just where it will most likely manifest itself.

Now, those of us who have had a surgery have a little bit more trouble because now diarrehea is more common even during times that we aren't going through a flare up due to the shortened bowel. For me, if I eat a carrot it most likely won't be digested properly and will come out pretty much looking like a carrot, which, of course, will be incredibly painful.

Wish Me Luck

2009-07-10T13:23:00.000-05:00

As some of you may know I am a Civil War Reenactor and one of the more hardcore ones at that meaning I try to do my best to live as a soldier on campaign, my use of the port-a-potties (or a real bathrooms if the event has it) and my taking of B-12 the only real modern day moments I allow myself. Now, during the last two years I have only had three problems while at events, and one was because I hadn't known for a year that I was supposed to be taking B-12 (I was probably the only reenactor that could claim the beginning stages of scurvy). When these problems hit though it is really bad and I often find myself spending a lot of time in the hot, stinky fly ridden port-a-potties that are set up for us (or, in the case of coming home from Gettysburg last year, stopped at a rest area at two in the morning in Ohio, regretting the decision to eat at General Pickett's Buffet the night before and wondering how I was going to make it through two more states), and then resting by the fire, my fellow unit members joking with me about having to 'piss from the butt'. These guys are great and if the event has modern day bathrooms for us to use they will often stand outside the door for me telling other reenactors that someone is inside so that I don't have to sit there and constantly listen to knocks on the doors and apologize for taking so long. They also try to help and find authentic Civil War foods that are a little more friendly than the slabs of bacon we cook over the fire in the morning, and then smile when other reenactors that don't know me to well ask how I manage to look so sickly for the reenactment and whether or not I purposely starve myself to stay this skinny (I tell them I do and sometimes they believe me and then ask for tips). They also won't let me forget the time I was really suffering and made an 'out of order' sign for the best, most hidden port-o-pottie so it wouldn't get all stunk up by everyone else (it was also in the shade all day which was great).

And now, once again I will be leaving for a Civil War Reenactment, one which two years ago I had to leave early from due to how weak I was from a lack of B-12. Two weeks ago I was at a Civil War reenactment and pretty much spent all Friday night and most of Saturday morning in the bathroom, and now am hoping the same doesn't happen again, my bag packed with breads and oatmeal, both of which will hopefully help stop the 'digestive track slip and slide' from being used this weekend. Maybe I should hang an out of order post on that.

UPDATE: Everything went well at the reenactment. No bathroom troubles. I even was able to eat some picked eggs (I was hesitant) and they didn't cause a problem. I did load up on bananas and yogurt before the event, so maybe that was what helped so much.

Crohn’s Disease Surgery - Intestinal Resection (III)

2009-07-10T09:40:00.001-05:00

Aside from waking up in complete agony right after the surgery my hospital recovery wasn’t too bad, and I think I have the epidural to thank for that. In fact, there were only two moments of pain that really left a mark on me, the first being the stupid nurse who pulled me to my feet the day after the surgery to get me walking, the second being the removal of a drainage tube, which the med student said wouldn’t hurt (why do we listen to them when they say this?).

First the nurse, and let me say this, she sucked. My doctors were good, even the young medical students who came in, but the nurse, well I could have done without her. Why do I say this, well, for one, she tripped over my catheter bag a few hours after my surgery which really hurt, and then she pulled me to my feet the next day without any warning and without telling me to press a pillow to my incision and then actually let out a small chuckle when I screamed and then had to sit in a chair and dry heave into a bucket. My mother was there at the time and I thought she was going to flip when that nurse laughed and after that I refused to get help when getting out of the bed to walk around, which actually might have helped my recovery since my body had to get used to working on its own. Oh, I also had to ask her to use the sanitation foam every time she came into the room. This was before MRSA started getting a lot of coverage on the news, but I knew about it thanks to Jen’s condition and wasn’t about to get sick from it (less than a year later my dad would almost die from it after nurse treated one of his skin grafts).

Second, the drainage tube. Oh god did that hurt. And like an idiot I believed the med student when she said it wouldn’t and didn’t even push my pain button beforehand. This pain didn’t go to waste, however, because two years later after my wife’s lung transplant she had four huge drainage tubes and knew to dope herself up before those were pulled. Even then she nearly broke all the fingers on my left hand when they pulled that out, which made me realize never to allow a person in pain to hold a hand that has a wedding band on one of the fingers.

Anyway, I stayed in the hospital from June 2 through the 7. I was supposed to stay in for two more days but my surgeon said my recovery was going so well that he’d rather I leave the hospital and try to get into the swing of things back home. Of course this meant having to have my epidural removed, which really sucked. No more knocking myself out at night with the push of a button.

Being at home was tough because everything in my parent’s house is on the second floor. Now, originally I was going to recover in Jen’s apartment since we were going to be married in two months anyway, but then a month before my surgery she decided it would be too stressful to take care of me during my recovery and asked me to move back into my parents house (I should have realized then that she would never honor her wedding vows). Of course, she ended up getting incredibly sick during my surgery and had to be hospitalized herself so I wouldn’t have recovered at her place anyway.

The biggest thing I had to get used to was watching out for my cats, one of which greeted my arrival home by jumping into my lap when I had my head turned (God did that hurt), the other who was still a kitten and loved to attack the catheter bag (she never outgrew attacking medical tubing and once unplugged Jen’s oxygen pump in the middle of the night). I also had to get used to going to the bathroom again, which was really painful. Everything came out pretty much undigested, and at about the speed of light. Also I hated the catheter, especially when trying to sleep at night, and had to wear it for a week.

During that week I also had to start writing again even though sitting up in the desk chair was painful. Once I got into the stories, however, it wasn’t so bad, especially if I took some pain pills right beforehand, which was good because I had a few deadlines to meet, most of which were taken care of by the time my catheter was pulled.

One of the great things about my surgery was the fact that they used glue instead of staples, which I requested. Many doctors will say it isn’t strong enough to keep things together but they are wrong. In fact, they use glue on transplants, so using it for intestinal surgery is no big deal.

Now, one thing that did cause a problem for me was that I forgot that I was supposed to be taking B-12, which would soon cause a major problem, one which nearly killed me.

Crohn’s Disease Surgery - Intestinal Resection (II)

2009-07-09T09:00:00.001-05:00

Going into surgery is one of the weirdest things I have ever undergone, and is really a feeling one can’t understand until they’ve done it themselves. Being rolled into an operating or procedure room, and then having that mask put over your face, and then suddenly waking up hours later -- it is just surreal, and up until the major bowel resection surgery, was something that I thought was pretty cool having experienced it a few times for procedures that required me to be knocked out.

Intestinal surgery is dangerous (well, all surgery is dangerous, but any time they cut into the intestines it is especially dangerous -- in fact, up until the 20th century, doctors usually couldn’t do anything for someone that had an intestinal injury just because of the infections that would result), so I did have a little bit of fear going into the operating room, but it was fear that I couldn’t do anything about so I tried not to focus on it. I was also pretty relieved because the day of the surgery was finally there and the cleanout I had to undergo two days earlier was over, and, due to the ‘go to sleep and instantly wake up hours later’ effect, I knew that from my perspective the surgery would be over in just a matter of minutes. What I didn’t know is that waking up after a major surgery like that is different than waking up after an invasive procedure, especially since they don’t turn your pain pump on until after you are awake, therefore you don’t get too much of the pain medication when you don’t need it. This means you wake up in pain, but the pain goes away pretty quickly due to the pain pump being turned on and because one is still so groggy that they don’t remember the pain, and really, if one doesn’t remember something then it doesn’t really exist.

What seemed like seconds to me was actually hours to everyone else, and during those hours something happened that required the pain specialist (or whatever the hell they are called) to leave the floor. Coincidently that is when I woke from the surgery, and at first everything was okay, but then, as my senses returned -- well, lets just say that when I get gut shot at a Civil War Reenactment I know how to act because I have pretty much experienced it first hand.

The pain was unimaginable and indescribable, and for the first time in my life I couldn’t control myself and was screaming. Knowing I was in distress the nurses tried to do everything in their power to calm me down, but regulations stated that they could not touch my pain pump, only the pain specialist could -- but he wasn’t there. At one point a nurse even told me that she knew I was in pain but not to worry because I wouldn’t remember any of it, which still pisses me off. I do remember it, though I probably wouldn’t have if it hadn’t taken the pain specialist over twenty minutes to get to me. And then do you know what happened, once he got there the nurses started yelling at him for taking so long and he got defensive and was arguing with them, all while I’m lying there in pain so I eventually shouted at them to argue later and to turn on my fucking pain pump. What happened next was the worst part, however, because all the pain specialist did was hit start, which was a button I could have reached twenty minutes earlier. One flick of the finger and I wouldn’t have been in so much pain.

Once the machine was on things were great. I was still in discomfort from the catheter and the stints they had put into me to light up the tubes running from my kidneys to bladder so they didn’t accidentally cut them, but it was nothing compared to the pain I had been in.

From the recovery room I was wheeled into my hospital room, which, unfortunately was a double room (hospitals have to stop doing this because of how easily germs can spread from patient to patient, plus from patients guest to patient). Thankfully I never did get an infection.

Once in the recovery room Jen can and visited me along with my family, which was nice. Also nice was that I could make myself fall asleep at the click of the button -- the pain button. The only downside was that I wasn’t allowed to eat or drink anything for two days while my intestines healed, but then, once I was able to, things tasted incredible. Hospitals are not known for their gourmet meals (not unless you go to the hospital in St. Louis where Jen had her transplant surgery and where they bring you a real life menu you can order from with everything from cooked to order omelets to sub sandwiches to tacos to desserts). My first meal was a piece of baked chicken, something I hate, but I ate all of it.

More to come . . .

Crohn’s Disease Surgery - Intestinal Resection (I)

2009-07-07T12:22:00.001-05:00

The more I talk to fellow Crohn’s patients the more I realize that surgery as a temporary fix is becoming pretty common, and those that haven’t already had the surgery seem to be either scheduled to undergo the procedure or are in talks with their doctors about doing this, which is why I have now decided to talk about my surgery and what I experienced (of course, I should point out that even if two people undergo the same type of procedure there is probably nothing similar between the two other than the name and what is being attempted, and just because my procedure was pretty much complication free and has kept me in remission for three years now, doesn’t mean the same is guaranteed).

My path to surgery began in October of 2005 when I finally became aware of why I was peeing out brown urine and why I had been in pain for a long time (in case you haven’t read any of my previous posts, I will let you know that I went through a lifetime worth of stupid doctors during the spring and summer of 2005, while in pain, constantly scared to death of what was going on with my body, before finally settling on Loyola Memorial Hospital in Maywood Illinois where a medical student -- not yet a doctor -- informed me that I probably had Crohn’s disease, and that I had probably developed a fistula -- even more impressive, this wasn’t a gastrological student but a urology student). Anyway, after finally realizing why I was suffering so much, I met with a young surgeon who specialized in gastrological problems and surgery (the urology people suspected that I was going to need surgery which is why I was referred right to her rather than going through a gastrological doctor first). She ran a test called Colonoscopy and then a Small Bowel Follow Through, both of which told her that my intestines were pretty fragile and that surgery probably wouldn’t be a good idea because she would damage the inflamed areas too much. After that she referred me to a gastrological doctor, one who gave me the usual treatments from Crohn’s Disease (pentasa, antibiotics, folic acid pills, and multi vitamins - I added Omega 3 fish oil as well). For a few months I stuck with this daily dose of pills, which was over twenty a day while dating my future wife Jennifer who was waiting for a lung transplant and was in agreement with my parents that the medications I was on didn’t seem to be doing much. Eventually I agreed and went to see another gastrological doctor, one who just happened to listed as the second best Crohn’s doctor in the country. He took me off the medications and told m they weren’t doing anything and that I needed surgery right away or else my kidneys would eventually fail from all the infections from the fecal matter backing up from my bladder, which is where the fistula was.

The surgery was called an Intestinal Resection and I was scheduled to undergo it in late May of 2005. At the same time my future wife finally got approved for a transplant evaluation in St. Louis and scheduled it for the week of my surgery, and told me I needed to post pone my own surgery so I could be there for her during her evaluation (needless to say this caused a bit of stress since the eventuation could have been scheduled for a different week and didn’t seem like it compared with having to undergo intestinal surgery, especially when we all knew she was going to have to wait a long time before even being allowed to move to St. Louis and get on the official lung transplant waiting list). Because of her evaluation I moved my surgery to the following week, eventually going under the knife on June 2, 2006.

An Intestinal Resection seems to be the most common surgery for a Crohn’s patient. The goal of this surgery is to remove the infected or damaged area of intestine and then reattach the two ends of normal bowel. Many people think this is a cure, but it isn’t (there is no cure for Crohn’s Disease) and eventually the problems will return, but usually not for several years. For me this meant cutting out the ileum, which is the last segment of intestine before the colon. They also had to repair the damage to my bladder. I remember asking the two surgeons if they would be to play nice inside of me and didn’t want them fighting over who’s turn it was to cut something (this was right before my surgery so I was pretty doped up). They said they would and that the bladder surgery would be first because it was the less complicated of the two.

One of the biggest stresses of the surgery was the fact that Jen was late and I almost went into surgery without getting to see her. She showed up at the last minute however and was able to talk to me for a few minutes before I went in, which was nice.

Now, before the surgery they asked me if I wanted an epidural for my medication or just an IV into my arm. I asked them if the epidural was what they gave pregnant women for their C-sections (I don’t know where I had heard this) and they said yes. I told them then that was what I wanted since the same area was going to be affected and if a woman could go through a C-section awake with one, I could certainly survive recovering with one. My mother made fun of me for this but a few months later she underwent surgery to remove a tumor and was offered an epidural and turned it down - big mistake. If you are offered one take it, and if you aren’t offered one, demand it (remember, you are in charge of your body and are really the one making all the decisions about your treatment).

Once all the prep work was finished I was wheeled into the operating room and moved onto the table. I remember thinking that the room was really small and cluttered. A few seconds later they put the mask on me and the next thing I knew, I was waking up in the recovery area, which is where I learned first hand what real pain was . . .

Painful Bloody Diarrhea

2009-07-06T05:39:00.001-05:00

Does this ever happen to anyone else with Crohn's Disease - you find yourself not really going to the bathroom for a few days and then all of the sudden wake up in the middle of the night (for me its always the middle of the night) with the worst, most painful cramps of your life, ones that certainly mean some butt numbing diarrhea is on the way, but then can't go? Even worse, when stuff starts to come out it isn't diarrhea right away, but solid masses, that seem to be blocking the diarrhea that wants out, leaving you in even more pain, until finally, like an hour later, the diarrhea hits?

UPDATE: A few hours later the diarrhea turned a bit bloody, though I don't think this is a problem. Most likely it is a result of all the damage this morning's episode produced, which should heal by tomorrow. This is one thing people should understand, a little bit of blood with Crohn's Disease isn't unusual and while concern over such a situation is normal (after all, having blood coming out is incredibly scary, especially if this is the first time) it is only really a problem if it is a continuous flow.

NOTE: I apologize if this isn't up to my usual writing standard. I am so exhausted from this morning that my mind just isn't getting things down the way I want them to sound. I am forcing myself to write about it, however, because I know others probably have similar problems from time to time and they may take comfort in knowing they are not alone.

Small Bowel Follow Through Test

2009-06-23T12:52:00.000-05:00

I must say, of all the medical tests I have even undergone, the Small Bowel Follow Through (aka Small Bowel Series) was the weirdest of them all. Why? you ask. Because it is the only time I can ever remember having these two things happen during a medical procedure: first, being told to roll around on a table for a few minutes like a little kid, and second, being told to lay on a table while different cute female medical students came in to feel up my groin (of course this second unusual moment was probably just luck, so don’t count on it happening exactly like this when you go in, and don’t ask where your cute female medical students are, because they might just then order a few brain examinations or worse, lie and tell you you need to drink some more barium because you didn’t get enough the first time around). Barium. Not as bad as the stuff you have to drink before a colonoscopy or surgical cleanout, but certainly worse than the eight or so ounces of crystal light flavored barium mixture you have to knock back before a CAT Scan. Oh yeah, you also have to drink a shot of this really weird fizzy stuff that fills your stomach up with gas. But now I’m getting everything jumbled together so let me start from the beginning. First, the small bowel follow through test is one that will take X-Rays of your intestines as barium is going through them and will show doctors exactly where the problems are. Now, why one has to undergo this and a Cat Scan I don’t know, because it seems like they both serve the same purpose, but apparently they don’t since the insurance companies will pay for both and we all know how much they hate paying for things if they don’t feel it is necessary. Anyway, the first step in this procedure is fasting (if the Crohn’s Disease doesn’t knock off those unwanted pounds then the medical tests surely will), again, usually starting at Midnight before the day of the test. After that you will be ordered to change into a gown even if you have purposely worn clothes that don’t have medal in them (I suggest wearing two gowns, one the right away and then one like a bathrobe, which in turn will cover up the backside and keep you warm since those rooms are always freezing). Once that is done they will lead you into a room where you will be required to drink that fizzy stuff and then a few sips of barium (this threw me off during my test because I thought that was the end of the barium and was happy, but no, you will have two giant glasses to finish after this first part). Once that small amount of barium is in then you will have to get on the table and roll around for a while so that the barium coats your stomach. Then they take the X-ray. With this test they discovered something very interesting in my body, apparently my stomach isn’t where it normally is on a person, but instead up near my armpit. Don’t ask me if this is a good or bad thing, but it certainly was interesting for them. Once that is finished it is time for the barium.

Now, when I did the test the lady came back and told me I was going to have to drink two cups of barium (this being after I thought I was finished with the nasty stuff). Hearing this I asked if she meant two eight ounce cups, or two giant cups (my eyes were looking at two empty giant cups, ones you would expect the large soda at a movie theater to come in) and she told me no, just two cups. Of course, I was hoping this meant the two eight ounce cups, but no, it was the giant movie theater sized cups, both of which took me almost a half hour to down. Once those were down the cute female medical students started to come in every fifteen minutes to take X-rays, which meant I had to lay back on the table and enjoy myself as they felt up my groin to try and speed up the barium movements. Once done with that they would leave and I would have another fifteen minutes to read (this test took me six hours, so bring a book and have whoever comes with you bring a book). After several hours of this the barium had finally reached the area of concern, which is when an actual doctor came in and pressed a really weird paddle like device onto my stomach and attempted to move the ileum part of my intestine around to get a better shot if it. He had trouble, however, and never was able to get it to move where he wanted, probably because I had the fistula connecting it to my bladder. Eventually he decided he had enough pictures to satisfy my doctor and sent me on my way.

NOTE: This test will give you white bowel movements for a few days. No one told me this so when it started to happen I had to look it up myself to make sure this was normal. So, if you start crapping like a bird don’t worry, it is normal and will clear up.

Crohn’s Disease and Health Insurance

2009-06-21T10:05:00.000-05:00

For me the hardest thing about living with Crohn’s Disease has been the struggle to get health insurance, which, from what I’ve heard, is a common problem. The trouble is that Crohn’s Disease often hits at the worst time during the person’s life, the average age being between 20 - 25, which in turn is the age when most young adults are making that jump from being dependent upon their parents to taking care of themselves. Now, even without a devastating disease, this jump can be pretty traumatic. Toss in Crohn’s Disease and one often falls short of their destination, their lives ruined as a result, the pieces almost impossible to put back together.

The trouble is that not many people realize that if they have health insurence through a parent and have a medical condition like Crohn's Disease that will prevent them from getting health insurence on their own, they need to make the transition while still covered by their parents plan, because then they won't be considered a new customer, but an exsisting one, which means they will continue coverage. Here's the thing, if there is any gag between the end of your parents coverage and the time one tried to get their own coverage the insurence company will considered them a new customer and then will deny them due to previous medical conditions.

Scar Tissue Abscess?

2009-06-19T15:31:00.000-05:00

Had anyone else out there ever gotten a small abscess in their scar tissue? I have heard about this happened but don’t exactly know what it is and wonder if that is what I dug into today. Let me explain. A few years ago right after my surgery (about half a year maybe) I noticed a small black dot right on the edge of my scar. At the time I never paid much attention to it because I had bigger things on my mind, like how I could go a day without having diarrhea, how I could make more money at work, and why my new wife seemed to hate everything about me.. About sixths months later I had fixed one of the problems: eating bananas and yogurt everyday seemed to prevent the diarrhea, which was good, and my wife seemed to be warming up to me again, though this didn’t change the fact that while living in St. Louis waiting for her lung transplant she wanted me to stay in Chicago (I was the type of husband she missed when I was gone but hated when I was around, all of which I thought would change after her lung transplant because she would be feeling so much better - it didn’t, and she divorced me after coming home). Anyway, during these years I occasionally noticed the tiny black dot on the scar tissue, but still never thought much off it, and never played with it, which is very weird for me since I am the type that will keep picking at something until there is nothing more to pick at (peeling the glue off after my surgery was fun, though thankfully something I only started to do once the threat of infection and reopening was long passed). Today changed all that. Today I noticed the black dot again and just decided to see what it felt like, which alerted me to the fact that it was actually raised up above the scar tissue. After that I decided to squeeze it a little just to see what would happen, and oh my God, about an inch of puss exploded from within.
Anyone else ever experience something like this?

My CAT Scans

2009-06-17T15:32:00.001-05:00

Sometimes I wonder if my Crohn’s Disease would have gotten so out of control if the CAT Scan my first doctor had suggested at the beginning of my ordeal had actually been performed, for it would have seen the inflammation in my small bowel and notified everyone that the pain I was in was a bit more serious than a kidney stone or pulled muscle, both of which were explanations the doctor gave me when I first went to see him in the spring of 2005. The reason that first CAT scan never happened was because of how long it would have taken for me to get one. When the doctor thinks you have a kidney stone, going to have a CAT scan a few weeks later to confirm wouldn’t really be necessary since the stone would have already moved on by then. Of course, no kidney stone ever did pass, which should have alerted the doctors to the fact that a CAT scan was probably a good idea, but once it became apparent to them that I didn’t have a kidney stone they just assumed it was a pulled muscle and that things would get better in a few weeks, without, I might add, the help of pain killers. Now I know most people don’t get pain killers for a pulled muscle, but this apparent pulled muscle was so bad that I couldn’t work or sleep and spent most of my days in the bathtub because it was the only way to release the pain (I sometimes took six baths a day and some in the middle of the night, that’s how bad it was).

Three months later, this now being August of 2005, I finally did get a CAT scan, but only after pissing out a bunch of brown crud, which was the result of a fistula that had developed between my small intestine and bladder. Unfortunately at that point the new doctor I was seeing was a dumbass and even though the CAT scan technician said that the findings looked like Crohn’s Disease due to the thickening of intestinal wall this new doctors just felt that the brown crud I had peed out was the remnants of a prostate infection I had picked up while using a backwoods bathroom at a Civil War reenactment in Billie Creek Indiana. Oh, they also didn’t use a barium contrast with this CAT scan which should be standard operating procedure and would have helped to highlight the hole between the two organs.

In October of 2005 I finally did get a proper CAT scan with the barium contrast and iodine IV at Loyola University in Maywood where a church friend of my Mom had gotten me an appointment (this is where I would have had the first CAT scan if the doctor had decided it was necessary after not passing the kidney stone he was so sure I had), one which proved to everyone that I did have Crohn’s Disease, something which even the medical students who saw me were certain off before running any tests (I should also mention that the doctor who figured out what the problem was wasn’t even a gastroenterologist, but a urologists since everything I was experiencing at that point seemed to be bladder related).

It is the result of this CAT scan in October of 2005 and the realization that I was being seen by doctors who knew what they were talking about that makes me think all the trouble that had built up in the spring, summer and fall of 2005 could have been avoided if I have just gotten that first CAT scan. I think this because the main reason a Crohn’s Doctor (gastroenterologist) orders a CAT scan is to see if an abscess is present, which is a small painful pocket of infection that eventually can turn into a fistula if not treated (exactly what happened to me).

The CAT scan procedure is pretty simple and only involves a minor amount of prep work if the examination is of the abdomen like mine was (I had a head scan later in life after my car accident and that didn’t involve any prep work). First you have to fast for a while, usually starting at midnight the night before the test. The next morning you then have to drink something like eight ounces of a barium mixture that tastes terrible (this isn’t the same amount of barium one has to take for a small bowel follow thru series, however, and isn’t anywhere near as bad as a clean-out prep one has to undergo for a colonoscopy, so don’t complain too much). This barium, of which you will be drinking more of right before the test, makes it so the doctors can see the intestines with the scanning machine, which is basically just a very advanced X-ray (don’t worry about getting too much radiation if you have to undergo several of these during a short period of time because I was assured by a technician that a dozen CAT Scans wouldn’t even equal the radiation dose a two hour visit to the beach during the summer would give you). Once all the barium is down they then usually put in an IV that puts iodine into your bloodstream, which also adds contrast for the scan. This iodine sometimes make your head feel very warm for some reason and leaves a metallic taste in your mouth, both of which passes pretty quickly once the needle is pulled out. The scan itself doesn’t take all that long and is a bit interactive if you get the type of machine that makes you hold your breath for a certain amount of time, and seems to end moments after it begins. Once finished you will probably be asked to wait around a while just to make sure the scan got everything they needed and then will be allowed to go home.

My first real CAT scan (this being the one involving the barium in October of 2005) was a bit difficult for kind of a silly reason. At that point in my life because of the bladder, prostate and urinary track infection I had from all the fecal matter going that route from the whole in my intestine, I couldn’t go fifteen minutes without having to pee. Now, this sensation only got worse if I was lying down and like an idiot I forgot to go before the test because of how quickly things moved once I got the barium in me. I also couldn’t hold it very well due to the pain and pressure and halfway through the test the technician told me to stop squirming so much. I told him what the problem was and he let me go to the bathroom, just in the nick of time. Unfortunately this wasn’t the only time this happened to me and other times I wasn’t so lucky, which, at the age of twenty two, can be pretty embarrassing.

The Dreaded Colonoscopy

2009-06-17T12:26:00.000-05:00

Without question my least favorite thing about living with Crohn’s disease is having to undergo a colonoscopy every so often, though not because it is a painful procedure that requires one to lay on their side while the doctor feeds a huge ‘gastrological swiss army knife’ up their ass. It is the cleanout one must undergo the day before the procedure, one that really starts two days before the procedure when you are ordered to stop eating. Wait, you ask, the cleanout is worse than having a giant anal camera complete with a flashlight, air nozzle, and scissors slowly worked up into you? The answer is yes, and not because I’m crazy (well, we just can’t use that excuse here). The answer is yes because you are knocked out with twilight drugs during this procedure and don’t feel a thing, at least nothing you remember, and if you don’t remember something then it doesn’t really exist. If you were awake for this, however, then it would be one of the worst moments of your life, and for some reason some doctors do keep you awake, which I don’t understand. If a doctor ever told me I would be awake for such a procedure I would tell him to (well the term ‘shove it up your ass’ seems little out of place with this one, but I most certainly would find another doctor). Unfortunately you can’t be asleep during the cleanout, though once again it doesn’t have to be as bad as most people think or, sadly, experience.

I don’t like drinking salt water, but this basically is what you have to do when preparing for a colonoscopy, and if the pharmaceutical companies have their way, you have to drink a gallon of this expensive stuff before your intestines are completely cleaned out. The terrible concoction is called Co-Lite, which is the newest offspring of the old Go-Litely mixture (don’t ask me who came up with the names). Both are incredibly salty mixtures that require you to drink an eight ounce cup every fifteen minutes until the entire gallon is gone, during which you will also be running back and forth to the bathroom, your bowels exploding with the worst diarrhea you have ever experienced, one which brings to mind a term a fellow Civil War reenactor used to describe his experience after eating something at a wedding on the border of Texas and Mexico: pissing from the butt. While gross, this description is right on because by the time you are finally finished drinking the gallon of salty shit, clear water will be coming out of you, at which point I recommend a really hot bath, one which will help sooth the burn that will have developed. Now here is the thing that most people don’t know, and which doctors won’t tell you because most have a deal with the pharmaceutical companies: there is a small mixture you can drink that will clear you out just as well as the gallon of Co-Lite, but which only requires one glass of water to be consumed, one which will nearly make you vomit (just thinking about it makes me gag) but which is over with very quickly and will have you in the bathroom in about ten minutes. The stuff is called Fleet phosphosoda and you can buy it for a couple of bucks at the pharmacy which is why the pharmaceutical companies don’t like it (they don’t make any money). Some doctors will even go so far as to tell you that it won’t clean you out enough for the procedure, but this is bullshit, because my current doctor, who is the second best Crohn’s doctor in the United States told me I could drink this before my intestinal surgery, which he would never have said if it didn’t do a good job of cleaning one out because the last thing they would want during that procedure is chunks of fecal matter floating into the body.

Once you are cleaned out you will have to wait until the next day to have your procedure, which, hopefully you’ve scheduled in the morning because after not eating for nearly two days, and then having your insides scrapped clean by a chemical agent, one doesn’t want to wait around all day for the procedure to begin, especially since you are going to be doing a lot of waiting anyway given how many people will be waiting for their own colonoscopies. This is another reason I hate colonoscopies, but one which doesn’t seem so bad since the cleanout is over; you have to wait in a room that could easily be the holding area of a DMV, and listen hopefully as they call off five or so names every twenty minutes or so. Those names that are called are the ones that will be taken in back and prepped for the colonoscopy, which is such a common procedure now that having one done is sort of like being put on an assembly line, unless, of course, you are a Crohn’s patient and your own doctor is doing it. In that case all you are waiting for is the room.

So, there you are, in the holding room, prepped and waiting for the procedure to begin, which means you are now seconds away from it being over. Why seconds, because once they push the twilight cocktail into you you will be out and the next thing you know you will be waking up in a holding room, your abdomen experiencing some of the worst gas pains of your life since the procedure requires them to shoot air into your intestines to keep them inflated so they can move around easily (see, isn’t it nice that they now put you to sleep for this), but which will pass within twenty minutes or so. A word of advice, if your girlfriend is the one who has taken you to this procedure don’t ask for her to come back into the room until after this gas passes. Also, stay on your side in the fetal position because the gas moves out much quicker that way.

NOTE: If you are the one taking care of the person undergoing the colonoscopy, don’t try to have a meaningful conversation with them after the procedure because that twilight stuff is funny and will have them asking you the same thing over and over again for at least an hour before they full understand what is going on.

Diarrhea and Pain

2008-04-19T10:06:00.000-05:00

Diarrhea and pain seem to be the two most common complaints when it comes to Crohn's Disease and for good reason. People that don't have Crohn's Disease don't realize how awful having diarrhea can be for a person with Crohn's. It is one thing to have diarrhea going through healthy intestines after eating something that didn't agree with you, it is another to have the awful chunky sludge racing through your system when you have inflamed intestines that have previous been torn apart by repeated infections and surgeries. Hell, just having gas go through is an experience most non-Crohn's people wouldn't want to experience, let alone the actual mishmash of partially undigested food bits with their protruding edges and air pockets that want nothing more than to slide through your intestines like a kid going down a water slide, only without the water or lubrication that is so needed.

I have been fairly lucky with my Crohn's Disease. Before my surgery I hardly ever got diarrhea, and after my surgery it only took a year before my body adjusted to the missing foot of small intestine, which meant it only took a year before I stopped having diarrhea after every meal. However, every now and then my small intestine will get a little inflamed, and a bit pissed off at me for some reason or another (either from the foods I have chosen to eat or because I choose not to eat a few meals and backed up the normal flow of things), which means I am in for it.

Last night started out fine. I was back in Chicago after having driven home from St. Louis where my wife is still recovering from her double lung transplant. I came home because I need to get the apartment in shape for her return, which means having the carpets cleaned and stuff because of the germs that could reek havoc on her immune-suppressed body. After eating dinner with my parents I watched HOUSE and then went home where I took a bath and then crawled into bed. Around ten o'clock I feel asleep (while watching another episode of HOUSE) and then woke up to my wife calling me around ten forty. We talked for an hour and while talking I kept noticing that my gut was starting to feel cramped, though it wasn't too bad at the time, but it did remind me that I had been feeling this almost every night for the last few nights and hadn't gone to the bathroom in a few days, which is never a good sign. Sure enough I was in for a horrible time.

After talking with my wife I switched on the TV and laid there for a moment watching MAN VS. WILD. While doing this the cramps started to get really bad and I found myself curled up in the fetal position unable to move. Now, for all you non-Crohn's people, the cramps I am talking about are unlike anything you have ever felt unless of course someone had cut open your stomach, reached into your bowels, grabbed a chunk and started tying knots with them. I am not a wimp when it comes to pain and can usually work through it (the fact that I have never taken a sick day from work is proof of this), but this was so bad that I actually doubled over and would have fallen to the ground had I not been able to grab the bed railing.

The pain loosed up after a minute and I started toward the bathroom, but then it hit again and I found myself doubled over against the wall. I might have cried out too, but don't remember. Once this wave of pain passed I made it into the bathroom and attempted to let everything out, only nothing happened, which again, doesn't seem to be all that uncommon for me when things like this happen. Sometimes it will feel like I'm going to have diarrhea but really it is just my intestines reminding me that they are there and that they aren't happy; this time it was my intestines telling me they were ready for a cleanout, only, the countdown wasn't complete yet.

Unsure of what to do I returned to bed and once again curled up into the fetal position while watching MAN VS. WILD. I wasn't even there for two minutes before the pain started again and I found myself crawling to the bathroom because walking was too difficult. Once there I tried to go again, but again nothing happened and I eventually returned to bed.

Third time was the charm and baring any disgusting details I will just simply say I was in the bathroom for almost an hour and by the time I was finished I felt like I had just gotten rid of a dozen pine cones, which still hurts twelve hours later. I don't know why my intestines do this from time to time, especially since I am in remission, but I guess it is just going to be a fact of life. My only concern is that it will one day happen while I'm on the road, because once that pain hits there is no way I will be able to drive.

Great Crohn's Disease Book

2008-04-15T11:51:00.000-05:00

I have added a link to a book called The First Year: Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed by Jill Sklar on the right of this blog. My mother bought me the book during the month when I was finally diagnosed with Crohn's Disease right before I was to begin a battery of test that would prove without a doubt that I did have Crohn's Disease (the doctors and I knew I had it but the tests were necessary so insurance would cover my medications and any surgical operations I would face in the future).

I recommend this book to anyone who has been newly diagnosed with Crohn's Disease or for anyone who thinks they have the disease and is about to begin a series of tests. This book had so much helpful information about the disease and what I could expect in the next couple of months that I don't know what I would have done without it.

Crohn's Disease - Progress

2008-04-08T07:11:00.000-05:00

After getting jerked around by stupid doctors that had no idea what they were doing I finally went to a teaching hospital where a friend of my Mom's knew a urologist who was one of the better urologists around. The guy's appointment book was filled for the next several months, but with the help of this friend, and because I had been suffering for so long at the hands of crappy doctors, the urologist agreed to see me that week, this being early October.

I was glad I was seeing a new doctor but also a little frightened. I had no idea what was wrong with me, but knew it had to be something horrible.

Before going to the doctor I decided to type out a time chart that started with my back pain and explained everything that happened since then. I left nothing out and put in all the crazy theories my former doctor had had about why I was in pain, why my prostate was infected, and what he thought the brown stuff was that was coming out of me (brown stuff that he never ran a test on).

Once at the hospital I was led into a small examination room. A few minutes later a man came in and introduced himself as a medical student that worked with the urologist. He wanted to know everything that had been going on and was very interested in my time chart (when he came to the part where my former doctor had said I probably had gotten a prostate infection from using a portable toilet at a Civil War Reenactment he laughed out loud and told me it was impossible). After reading my chart he asked me if I sometimes had air in my urine while peeing. I told him I did. He looked at me and then my mother and said, "You have crohn's disease, plain and simple."

Later the urologist came in and looked at everything and did a prostate exam and also concluded that I had Crohn's Disease, but before he sent me to a gastrointerologist he wanted to take a look inside my bladder. This startled me, but then he explained the process, told me I would be asleep the whole time, and I agreed that it sounded like a good idea. A few days later I was in the outpatient surgical center, scared out of my mind, unsure what to think, yet also somewhat excited that we finally seemed to be on the right track.

Crohn's Disease -- Stupid Doctors

2008-03-29T08:42:00.001-05:00

Like everyone else, doctors are human and most only work to earn a paycheck, not because they enjoy helping people. Many are also very protective of their diagnosis and cases and don't want to turn them over to other specialists even if the case is getting out of their realm of knowledge. I learned all this during the months of August and September of 2005, and despite the time that has passed, still get angry when thinking about the hell those idiot doctors put me through.

After filling the toilet with brown and black urine my doctor didn't call me for several days and once they did finally get in touch with with me they simply said that I was starting to pee out the infection and that I needed to continue to drink a lot of fluids so that it didn't build up again, which is what I did, because at that point in my life I was still of the opinion that if someone was a doctor they must know what they are talking about (WRONG!).

A few days later I was still peeing out a lot of brown stuff, as well as blood and gritty objects, but my doctor continued to insist that it was just the infection coming out. One day though I ate a poppy seed bagel and later that morning started peeing out poppy seeds. I didn't actually realize I was peeing out poppy seeds until after I finished using the bathroom and felt something still stuck inside of me, which was really painful. It took awhile, but eventually I was able to manipulate this small black thing out of my urethra with the aid of a toothpick (probably not the smartest move but when you are in that much pain you just do what you have to do) and brought it to my mom. We both thought it looked like a poppy seed and brought it to the doctor.

He looked at it and said there were two possibilities: either my prostate infection had been caused by a communication between my intestines and bladder, meaning a small opening had developed between the two, or a poppy seed had fallen off my bagel, gone into my pants and got pushed into my penis, which is what he thought was most plausible, but, if I wanted he could have me get a catscan just to make sure he was right.

I was pissed. Given how much pain I had been in while peeing and given the fact that I had pulled the poppy seed from inside of me after I had gone to the bathroom, which to me meant it had been in there from the start, I didn't like the implication that I was mistaken, but I kept my mouth shut and did the catscan, which, surprise surprise revealed a hole between my small intestine and bladder, as well as a thickening in my small intestinal wall and areas of inflammation, all signs of Crohn's disease. The tech that ran the test even wrote down that this looked like Crohn's disease, so my doctor sent me to a gastrointologist who was supposed to specialize in Crohn's disease.

It wasn't Crohn's disease, however, according to the specialist because I didn't suffer from diarrhea constantly. He told us this flat out and said no tests were necessary, he was an expert and knew Crohn's disease when he saw it. He then advised me to take advil for the pain (something people with Crohn's should never do) and to continue to flush out the infection with water, which is what I did for another month before finally getting fed up with all this bullshit and switching doctors.

What is Crohn's Disease

2008-03-25T07:35:00.000-05:00

Most people think that Crohn's Disease is a problem with the gut that causes a lot of diarrhea, which, yes, it does that, but that is only a result of the Crohn's Disease, not what Crohn's Disease actually is. Crohn's Disease is a problem with the immune system. Most immune systems can tell the difference between good and bad bacteria, but when it comes to Crohn's Disease, the immune system can not make this distinction and will attack both good and bad bacteria, and since most bacteria is found in the small intestine, the immune system starts attacking areas of the small intestine, which in turn can lead to inflammation and areas of damage, which makes digestion difficult, which in turn causes a lot of food to pass straight through, which causes diarrhea.

Obviously Crohn's Disease is much more complicated than this and can't all be explained in a few sentences. This, however, is a good basic introduction to this disease.

Crohn's Disease - My Early Symptoms

2008-03-19T08:51:00.000-05:00

First, I would like to point out that I am not a doctor. All my knowledge of Crohn's Disease comes from my own experiences. Three years ago I was diagnosed with Crohn's Disease. Before that I was a pretty healthy person. I was in good shape and was rarely ever sick. In high school I was one of the best still ring gymnasts in the state and after high school I worked construction while contemplating joining the army. My life was good. Everything seemed perfect. If I wanted something there was no reason to think I could not achieve it; but then something happened.

The back pain was an annoyance at first; just something I noticed from time to time and complained about. It didn't prevent me from working, but was making it difficult. I found myself shifting a lot in my chair at work trying to find a comfortable position, but never achieving it, and struggling to lift things that hadn't bothered me a few weeks earlier.

I didn't really think much of the pain at the time and figured it would go away in a few days, but it didn't. Instead it got worse and worse and I eventually found myself unable to sleep at night, unable to sit at my desk, and unable to sit in the car.

Eventually I went to the doctor, which didn't produce any real results. Without running any tests my doctor told me I had a kidney stone and that it would pass in a few days. I was horrified, but then, after a few days, I realized a kidney stone would have come and gone by then and that the pain had to be something else so I went back to the doctor. This time he took an x-ray, informed me that I didn't have a kidney stone and that instead I had strained my back and needed to take it easy for a while. So, that's what I did, only the pain did not get any better.

Two months passed. During this time I didn't get a single full night sleep because it was too painful to lay in bed. Instead I would toss and turn all night and eventually end up on the couch with my heating pad watching TV, my cat curled up with me, or I would go sit outside if it was warm and watch the raccoons playing in the trees. I also was forced to drop all but one of my classes at school because I couldn't sit in the desks, which also made focusing on my writing at home very difficult (before the back pain started I used to write ten pages a day in the mornings before work or school, after the back pain started I don't know if I wrote ten pages that entire summer). I also could barely work outside of the house, where I was helping a company move its store from one location to another, which involved a lot of heavy lifting, which I just couldn't do (everyone thought I was just a wimp and made fun of me all the time).

The only comfortable place for me was in the bathtub. Once the pain got to the point where I could barely move I would fill the tub with the hottest water possible and would sink into it and stay there until the water ran cold. Sometimes I would take five or six baths a day to relieve the pain, which later started to show up on my parents water bill.

A few months after the back pain started a new pain developed. This time it was on the right side of my groin. I also noticed that I could never seem to get all the urine out of my body and would return to the bathroom several times after initially going. This brought me back to the doctor. He had me bend over for a prostate exam. Once he was finished he informed me that I had a prostate infection. He didn't think it was strange that a twenty one year old would have a prostate infection and didn't give me any medication for it. Instead he told me to drink a lot of water to flush out the infection and wait it out, which is what I did, for two weeks.

Two weeks later I was at home talking to a girl online (hoping for a date) when a sudden sharp stabbing pain hit my groin. It was followed by a very audible POP! and then the sensation of my bladder filling up. I ran to the bathroom without saying a word to the girl online and stood over the toilet. What happened next was the most frightening moment of my life. Brown sludge came out of my penis rather than urine and filled the bowel to the point where it looked like I had diarrhea. The sludge was clumpy and gritty, almost like sand, which did not feel good at all. Once it was all out I stared with disbelieve at what had come out of me and ran to the phone where I called my doctor, who had left for the day. I left a message about what happened. It took over two days for them to get back to me.

Knowing no one would believe me if they didn't see it I left the toilet as is and waited for my family to come home. They were horrified by what they saw and made several calls to my doctor over the next couple of days, which finally resulted in me getting an appointment for a cat scan, though my doctor really didn't see the point in it. In my doctors opinion the brown sludge was just the infection coming out of me, which, I now know, is one the most ridiculous explanations for what had happened.