My Life With Crohn's Disease

by Matt the Webmaster

So, your interested in who I am and how I was diagnosed with Crohn's Disease. I was diagnosed on September 1, 1994. I was 13 at the time and had spent the summer in severe pain. My intestines had swollen shut and I was totally dehydrated when I went into the hospital. Before I was diagnosed, the doctors gave me Zantac for an "ulcer", and one doctor thought that I was starving myself!

I would sleep a lot more than usual and I didn't want to do anything. The worst part was that nobody knew what was wrong with me. Did I have some new, unheard of disease? Not even TV would leave me alone; I'd click around the cable and be greeted with: "How can I be dying of a disease no one's ever heard of?" from a soap opera. How depressing! When I was diagnosed, I had the usual selection of tests done, like the oh so fun Upper GI! To this day barium makes me gag.

What was worse was the next day the doctor started me on vanilla Ensure, which is just too much like barium. Days later, I was released from the hospital with a disease I'd never heard of in my life and a lactose-free diet. I was to take six Asacol per day.

The initial shock passed, as all things do, and my life returned to a some-what normal state. I went back to school, kept my grades up, and participated in the school choir. I've been involved with two school choirs in the last 6 years. I've been to state and county events, and always enjoyed myself. The disease doesn't get in the way, except for when it's time to eat.

I have found that one of the hardest parts of having Crohn's is explaining it to other people. I've tried giving out informational brochures to my friends and relatives, and some think it's a psychological problem, others say it's a form of food poisoning, and still others believe it's stress related. I'm satisfied now if people just accept that I can't have milk products!

Life was good until October of 1996 when I unexpectedly collapsed at school (But, then again, does anyone really expect to collapse?). The Crohn's had become worse, and the Asacol hadn't worked in holding off the inflammation. So I was wheeled to the office (scaring a lot of people in the process) and sent to the hospital. A few X-Rays and a pain shot later, I was at home, resting. For the next week, I'd have terrible bouts of pain and vomiting. Then, back to the hospital where I'd remain for eleven days. They were the longest of my life. The only good part was all of the get-well gifts people sent: cards, books, CDs, and video games.

I was kept on Nubain (the best pain drug on Earth) and an IV instead of food. I stayed on Nubain 24 hours a day to keep the pain down, which means that I slept for most of my stay. My doctor ordered an Upper GI to be done, and this one took 8 hours to do. In the end, the staff gave up on finishing it. The barium wouldn't go through my intestines; they were swollen shut again. After my long stay, I decided to not go to school until I had recovered. I was taking Prednisone and 6-MP. All of my homework was sent to the house and I went on the homebound program. I was even put on a liquid diet for six weeks. In January 1997, I was getting ready to go back to school. Even at home, I kept my grades up to A's. There are days when I wished that everyone should have to spend a week with Crohn's so that they know what I went through everyday.

By April 1997 I was totally off of Prednisone and completely back to normal. I had returned to living life to the fullest potential. In June 1997 I traveled to Europe for a 17-day vacation. I traveled through England, Scotland, France, Switzerland, Lichtenstein, Germany, and Austria. As part of a tour of 106 people, all of our food was ordered ahead of time. Most of the time restaurants would serve the tour group chicken. Thanks to my CD-influenced diet, I was blessed with some variety in my meals - foods such as steak, pasta, and potatoes. I believe the tour group was served chicken at least 20 times. For once, Crohn's Disease was useful! While in Europe I had only one Crohn's attack, and it was a minor one. I missed shopping in Paris, but I bounced back and enjoyed the rest of the tour.

In August 1997 I resumed school. All of my teachers were understanding to the Crohn's; a few of the teachers had heard of the disease before. I only missed a few days during the term, and I was always able to make-up homework. My math teacher was even nice enough to e-mail me my assignments on days I was out! In December 1997 I was asked to play the part of Ebenezar Scrooge in the German III production of "A Christmas Carol". Of course, it was all in German. On the day of the performance, we had to perform four shows under the hot lights. If you ever participate in a stage production, I advise you to keep some water with you at all times! It saved me a few times that day.

My school year continued without negative incident. In February 1998 I won the Prudential Spirit of Community Initiative Award. Most all of my friends congratulated me, and I experienced my fifteen minutes of fame. Actually, it was more like four months of fame. Newspapers, television news, and others wanted to hear my story. In May 1998 I traveled to Washington, D.C. to meet with the 51 other award winners (one from each state, DC, and Puerto Rico). I met so many great people and made so many new friends. During my time in D.C. I met Barbara Bush and Richard Dreyfus. This trip was the best experience of my life, and I owe it all to Crohn's Disease. Who knew?

As school concluded, I found myself looking out into my summer, and it was full of possibilities. In early June I returned to Washington, D.C. to meet Kara Levy, the Editor of the now-defunct Insider Newsletter. I had a terrific time with her and her friends. When I returned home, I began my new job at a local hardware store. I quickly learned how to cut keys, fill propane tanks, identify bolts, and other hardware-related activities. I worked full time (40+ hrs. a week) for several weeks until disaster struck, and once again this disaster was Crohn's.

At first it was the usual stomach pain. I toyed with the idea of going on a liquid diet right away to avoid a flare-up, but I knew that I could not function full time at work on Ensure alone. As the days went by, the pain increased to the point where I had to take time off from work. I began living on pain medicine around-the-clock and laying on the couch sipping Ensure. As in 1996, I would feel terrible one day and terrific the next. I was in and out of the doctor's office over the course of a week until the decision was finally made: 40mg of Prednisone a day. I would also have to endure another Upper GI within days.

So I went home and began the steroid treatment. I spent my weekend on the couch (again) and on Monday morning I went for the test. I was expecting to be at the Diagnostic Center most of the day, especially knowing that my last Upper GI took eight hours to complete. The test began like the others had: lay on this table and drink this Barium. But this time the Barium had been mixed with another liquid to help move the Barium though my system at a faster speed (the doctor performing the X-Rays had learned of my eight-hour upper GI record). The vile liquid was so bitter that I vomited instantly. On the next try I was given straight Barium (no extra chemicals). After drinking ¾ of a glass, the X-Rays began. After 3½ hours the test was finished and I was heading home.

I spent another week off from work in order to get my digestive system back on track. I was onto soft solid foods by this time. On Wednesday the GI results were in, and the bad news was here. In the last two years the Crohn's Disease had spread further into my small intestine. My doctor decided to increase my 6-MP dosage to 100mg a day and to keep me on 40mg of Prednisone for the time being. A week later I went back to work part time (28 hours a week).

Time passed, as time tends to do. I eventually had my doctor's blessing to cut my Pred dose down, and I did so until I reached 15mg. That dosage did not agree with me, and I experienced a minor flare-up... again. I returned to 20mg, and then eventually back to 15mg and now to 12.5mg.

In October 1998 I was featured on the local NBC station as a "Good Kid of the Week" for my work on TWC. Some of my best friends were in the two minute segment. The core of the segment featured my friends asking me questions about Crohn's. They learned a lot during this exchange, as did I. Overall, the filming was one of my favorite experiences. Thanks to the many news stories going on during September, my segment was bumped twice from the schedule, but it was worth the wait. Here's a big "Thank You!" to Laural Porter and the great people at Channel 2 ;-)

As the semester winded down I found myself looking ahead again. I'd been accepted into the college of my choice to pursue a degree in Computer Science. In January 1999 I began a computer programming class in PASCAL at the college while continuing high school. Oh, and I'd have to find time to go to work in there somewhere, too.

Then I was hit with something I absolutely did not have time for: a flare-up. It started as most of them do - a little pain, some nausea, and decreased energy. I did the usual precautions (after all, by now I like to think I'm becoming a pro at this disease) and tried not to let stress to get to me. I think that stress causes more of my Crohn's problems than any other factor. Things were briefly looking up, but then in mid-January came: The Calculus Test. It wasn't supposed to be a big deal; just another chapter test. Oh, and by the way - calculators were not allowed. The stress from the situation pushed my poor intestines over the edge, and I found myself at home on the couch on a liquid diet. It's amazing how the more things change, the more they stay the same. I vowed to recover quickly and went to work the next morning. It was the kickoff day of the Big Sale at work, and the stress from the customers coming in and rudely demanding sale items again caused some problems - so it was back home again to my Ensure. For the next half a week I went back and forth from school to work to the couch. But this flare-up was curious: no pain, but lots of nausea.

I took Ensure for lunch everyday that week. My friends were asking how it tasted. I'd been describing it for four years, and my descriptions just don't do it justice. So I decided to bring some extra and share it with them. If you've never let your friends try Ensure, you and your friends are missing out. They get to experience what we have to drink during our liquid diet phases, and you get satisfaction of knowing that your friends know a little bit more about what it's like to live with the disease.

Later in the week I saw my doctor, and we decided that the time came to try the latest Crohn's treatment. Something so new that the long term effects are still, for the most part, unknown: Remicade.

The infusion took place the next morning. I spent eleven hours at the hospital. The infusion itself took two hours. It's actually a very simple IV drip, followed by a three hour glucose drip to flush one's system. Think of it as Remicade with a glucose chaser. Some people experience side effect during and after infusion, but so far I have had none. In fact, that night I felt no stomach pain whatsoever for the first time in over four years. Four years! "With any luck," the doctor tells me, "You ought to be able to drop some of your medications eventually and perhaps even regain some of the foods lost over the years. We shall just have to wait and see."

So we waited. And about a month later I decided to live dangerously and sample some fast food french fries. I had forgotten the taste of these fried potato grease sticks, but soon the memories came flooding back and the small size order was gone. I waited to see what problems I'd have due to my experiment, and I'm glad to say that there were none! I am now able to eat french fries again (even a large order!). A few weeks later I tried another forbidden food: barbecue sauce. I lost this ingredient in 1996 after my last major flare-up. Once again I started small and waited for the results, and once again they were in my favor. Now the sauce is mine again.

The next piece of good news in my post-Remicade experience is that I was finally able to get off of Prednisone! I am so glad to once again be rid of that awful drug - even at a dose as small as 2.5mg I had no idea how much it was effecting my mentally. I feel like a cloud has been lifted from my brain. Plus now the Prednisone side effects are withering away, and none too soon either!

The last few weeks of school were extremely busy; there was always something going on: final exams, college exam, AP tests in Calculus and English Literature, big sales at work, and - oh yeah - a little something involving graduating. After graduation and the massive parties, I saw my doctor who told me that I was now, according to my recent lack of major symptoms, in remission and that I could try some of the forbidden foods. I started with yogurt and built up to Reece's Pieces and then Coca-Cola, all of which caused no problems. Moderation is the key here; just try one new thing every few days. Since it has been over four years since I last enjoyed these foods, I feel like I'm tasting them for the first time. In fact, one of my friends said that she almost wishes she could trade places with me to discover all the foods I've been missing. But this is one experience I wouldn't give up for the world.

In June I left my home of 18 years and my part-time job at the local hardware store and left for the next phase in my life.  I must say that it's been an exciting experience and during the summer I began working for the university doing web design (a skill I'd picked up over the years....) and getting used to my new surroundings.  While some would argue that all of these rapid changes would be stressful, I found that this summer was the calmest, most exciting time of my life.  I continued to test my diet and I did have a few setbacks here and there, but nothing long term.  By the time classes started in the fall I as adjusted and comfortable with the summer's changes and had balanced classes and work.  I have found that the most stressful part of classes is the computer programming homework.  Writing some of the programs that were assigned sometimes seemed impossible.  One simple mistake in the programming can cause the entire program not to work and, in the worst case, sometimes a program will run but will crash the computer in the process if there are enough seemingly simple mistakes in the program.  So needless to say it's a challenge to get everything running correctly and I have learned not to let myself get too wrapped up with the programming.  The stress and the resulting health problems are not worth it!  

After final exams (not as stressful an experience as I thought, but I would not want to repeat that Calculus II exam!!) I spent two weeks with my family for the holidays.  For the first time in months, I had absolutely no stress at all.  Every day I relaxed and had a great time.  But then it was time to go home and start the new semester.  For this semester I tried to balance my schedule even more than I had the last semester,  although I was not very happy with the evening class that lasted until sometime around 7pm.    

If I had the Spring 2000 semester to do over again, I would not have taken two math classes in the same term.  I do not know what I was thinking!  The stress from Calculus III and Intro to Discrete Structures (a math/logic course for Computer Science majors) caused a series of minor flare-ups.  I would have the usual stomach pains and lack of energy for several days in a row, then I would feel fine for another week, and then it was back to the pain again.  This pattern lasted until the end of the term in May when, after a long month of term papers, tests, and final exams, everything wrapped up and I took the time to get the rest and relaxation I needed.

I spent my summer back at the office working thirty-two hours a week.  A few weeks went by and then the pattern of pain and health returned again.  I tried adjusting my diet, changing my exercise routine, and switching my vitamins around, but the pain continued to grow until most of my days were painful.  By late July I was living on pain medicine and Ensure, so I came to realize that this flare-up was not one that I could stop by myself.  The time had come to see my doctor again.

A week after the usual round of blood tests my doctor decided it was time for me to have my second infusion of Remicade (the first being in early 1999).  The treatment happened one week later and went smoothly (except for some nausea).  I spent the next few days continuing to rest and let the medicine work it's magic, and the next week I started classes for the Fall 2000 term.  After the previous term's math madness I had decided to take an lighter course load.

I spent my weekends writing papers and working on a creative writing project and occasionally sprinkled in a little statistics homework.  The tests weren't too agonizing and the homework was more time consuming than stress-causing.  I used this term to rest up and get my health back on track, and by the end of the term I was feeling great again.  Final Exam week came and went without incident, and now with everything complete it was time to relax and get ready for the Spring term.

That term started innocently enough, but little did I know that one of the worst flare-ups in recent memory would happen during this time.  For reasons I'll probably never understand, I made a similar mistake as I did a year ago and decided to take two computer science classes in the same term, plus physics and statistics II.  Keeping up with all of the homework and tests pushed my stress level up, and by mid-February I was working hard to keep everything running smoothly.  I took a weekend off and flew to Wisconsin to speak at a CCFA conference where I met some amazing people and had a wonderful time.  I would gladly go back anytime!

After the conference I returned home, bringing a cold with me.  Thanks to 6-MP my immune system is repressed and I have a harder time fighting off conventional colds and flus that other people I know.  This particular cold hit me hard and lingered for two weeks.  During this time I missed the occassional class due to feeling bad, but I kept up with the homework during the downtime and decided not to slow down too much - I was going to push ahead and keep moving.  Bad idea...

The cold cleared up just before March began, but by this time the flare-up was starting.  It began innocently enough with a day of bad stomach pains.  But days like that happen all the time, that's part of living with Crohn's.  I'd just take a pain pill when I came home at the end of the day and hope tomorrow was better.  But tomorrow hurt, too.  And the next day.  And the next.  Soon a week had gone by and I was still hurting.  I switched to a half liquid/half soft food diet to try and stop the flare before it became any worse.  I didn't want to go to the doctor because at this point I feared that the only option to take was Prednisone - I had just had a Remicade infusion less than six months ago and it was too soon for another, and I knew that Prednisone would only make things worse when it came to my studies and dealing with people.I stuck with the half and half diet for another week, but by this time things were getting out of control. The pain was getting worse and I wasn't able to focus. I switched to a solid liquid diet, but found that I couldn't even keep Ensure down.  The only thing I could drink safely was water and cherry Slurpees.  After several days of this malnutrition and a disastrous week of mid-term exams (You try taking tests on days worth of an empty stomach),  I decided to call the doctor.

The doctor's solution?  Pentasa.  I have never had Pentasa, although I began my Crohn's treatment so many years ago with its cousin, Asacol.  I was instructed to take 16 Pentasas a day plus a new pain medicine, Tylox, as needed.  Oh, and try to get some Ensure down, too.  

I began the Pentasa that night and continued to take it over the weekend.  I still couldn't keep any Ensure down.  In fact, by this time I had no appetite at all.  I spent that weekend in bed sleeping and watching whatever movie came on TV.  I was waiting for the Pentasa to kick in so I could get back to my routine.  With classes being in high gear I couldn't afford to spend too much time in bed.  By Sunday night even water was causing my stomach to cry out in revolt, so on Monday I called the doctor.  Sure enough, I was having an allergic reaction to Pentasa.

With Pentasa a failure, I stopped taking it and spent the next week, which was now week 3 without nutrition, asleep in bed.  No homework, no classes, no work.  Just sleep and whatever was on TV.  I lived on pain pills 24 hours a day and sipped on water.  I e-mailed my professors and explained that I would be absent for a while and they were all very understanding about it.  My condition continuing to worsen, my mother flew in to visit.

I had lived on my own for almost two years at this point, but I was extremely glad to have my mom here.  Since all I had been able to do in the past few weeks was sleep, my apartment was beginning to fall apart.  She gladly came in and cleaned up, did the laundry, and brought me my pills.  Just having her around made me feel better mentally, and by the end of the week I was starting to feel better physically.  By Friday I was able to drink half a can of Ensure, and by the weekend I was up to a full can.  I was eager to get back to eating real food, so I tried some homemade mashed potatoes which settled without any problems.  Finally, things were getting better!

The weekend brought more soft foods to try: boiled chicken, eggs, pancakes, and more mashed potatoes.  The pancakes didn't work out though, so by Monday it was back to Ensure and, thankfully, eggs.  I was able to go back to work and classes now, but by the end of the day I was ready to settle down and go to bed.  However, no homework was getting done.  My professors continued to be understanding about my health and extended homework due dates.

I also took this time to register my illness with the university's disability office.  Now, at the start of each term, the university will give me official letters to present to future professors that explain that I might have to miss some days due to illness and that they should work with me to adapt due dates and attendance requirements during flare-ups.  Attention every college student out there: if you only take one piece of advice from this website, let it be this one.  Register your illness with your college as soon as possible.  It will make things easier in the long run!

By the weekend I was consistently eating eggs, chicken, and potatoes and my stomach pain was lightening.  My dad flew into town for a family wedding which, thankfully, I was also able to attend.  Of course I had to bring my own food, but it felt good to get out and be a member of society again!

My parents flew home early that next week and now I am back on track.  Blood tests have revealed that, for some reason, my 6MP level was low so I had to temporarily increase my 6MP dosage to 150mg a day, although now I am back down to 100mg daily.  Final Exams came and went and I began working nearly full time at work as I do every summer, although this year I had to take summer classes.  Technical Writing took up 90 minutes four days a week for one month, and Physics I Lab lasted only three hours a week for two months.  Overall it was a good summer both educationally and health-wise, although I did have a few mini-flares.

The mini-flares were basically the same that I'd always had: some pain, time on a liquid diet, and after a week or so I was back to my normal routine.  However, the flares kept coming.  I'd be healthy for a week or two and then another one would move in.  I cut back on a few foods that I had been able to eat but probably shouldn't be eating too much of and I tried not to overexert myself.  With the summer classes in session this year I was unable to go on vacation like I do every summer, but I got more than my share of time off with being at home resting with mini-flares.

The Fall 2001 term started in late August, and by design this was going to be an easier term for me than the Spring term was.  I am currently taking Biology I (with Bio Lab), Spanish I, Sports and Entertainment Law, and Scriptwriting.  The last two courses are not required per se, but they are topics I have always been interested in and I knew would be fun.  For example, in Scriptwriting I am working on a script for the TV show Frasier.  I decided not to take any math or programming classes, types of courses which in the past have been the most stressful for me.  I also am working roughly eighteen hours a week at the office.

The first month of classes went smoothly, but then the mini-flare started again.  Any number of things could have prompted it, as usual.  I did my usual routine and went to a half solid/half liquid diet for a few days, but my health only continued to get worse.  I began missing classes due to pain and fatigue.  By this time I was in a full flare-up.  I spent a week in bed, taking medication, and drinking liquids.  Blood tests revealed that this wasn't a typical flare-up, but rather a bug that was going around that I had picked up somewhere.  Until it passed on its own, I was going to feel lousy.

And feel lousy I did for the next month, going through pain, nausea, and all the other symptoms of a classic flare-up.  My absences at work and class increased.  I lost weight and watched a lot of television.

Around mid-October things began to look better.  The pain was decreasing and the nausea was just about gone.  I began to try and get back to my regular diet, starting with some chicken and mashed potatoes.  However, I've found that my system is sensitive to bread flour, so I've had to experiment with rice bread and rice pasta (with mixed results).  Some things just can't be made without traditional flour.

Things were looking up briefly, but then one Monday morning in early November I woke up and couldn't keep anything down - not even water (again).  Once again I saw my doctor, and he said he was out of obvious ideas to try and get my flare under control.  The only thing left to do, for now, was for me to undergo more tests.  And so that Thursday I went to the hospital for an endoscopy.  I was hooked to an IV, wheeled into the diagnostic room (where Enya music was playing), given the throat numb spray, the throat numb drink, some oxygen, and the sedative.  And then.... then... then...

 ... I woke up.  I have faint memories of being led to the car and being driven home by my mother (who was in town to help me out for the week).  Once I came out of the sedative completely, my mom told me that the doctor told her that the initial results were good, and sure enough once the final results were in my Crohn's had not spread to my throat or stomach (thank goodness!).  However the pain continued, so I went for an upper GI in early December.  Like previous tests, I drank the barium and was x-rayed.  The doctor discovered that my stomach works fast - the barium was in and out of my stomach in under twenty minutes.  The barium moved through my system normally for the first hour of x-ray time, and then stopped and remained still for about ninety minutes.  Then it began moving again and, after five hours of x-rays, I was sent home.

The results came in that week: I have two strictures in my intestines.  The first is in the midrange of the small intestine.  The second is at the junction where the small and large intestines meet.  These strictures are why I had been having pain more often and could no longer eat the staples of my diet (such as bread, pasta, and beef).  I have three options to deal with this latest problem.  I can have a stricturoplasty performed to open up the midrange stricture.  This is an incision at the trouble point and my intestine would be physically squeezed (like a change purse) until the blockage opened up.  I am not a fan of surgery by any means, so this option does not appeal to me.  The second option is a colonoscopy with a balloon tube attached to the end of the scope.  The balloon would be inserted until it reached the stricture at the junction where it would inflate and force the blockage open from the inside.  However, there is a good chance the intestine could rupture and then I would have to have surgery immediately to fix it.  So, again, this is not a option I am in favor of.  I have decided to, at least for now, go with the third option: minimize my diet further, take my pain pills as needed, and keep plugging away.  The strictures will not heal on their own; this is a mechanical problem, not an inflammatory one.  Medication will not heal these trouble spots.  I am hoping to learn to live with them, much like I've learned to live with the other aspects of Crohn's Disease.

After getting this information from my doctor, I went to visit my parents in Illinois for two weeks during the December break.  I spent the time resting, relaxing, and trying to forget all that had happened during the fall term that had caused trouble.  My parents worked out some new recipes for me that use rice flour so that I could safely eat things such as pie, cookies, and pizza (I will post these recipes as soon as we have all the kinks worked out of them).  After the break I returned home and began my senior year of college by taking Chemistry, Spanish II, Computer Organization, and Creative Writing.  I changed some of my eating habits and spent my time a little differently now so that all of my homework gets done well before the due date (so I can cut back on stress and pressure) and I was, as always, hoping for a good term.

Things started out smoothly and as time went by I settled into my new routine.  By cutting white flour and beef from my diet I no longer ate some of the vitamins I needed, so I began to feel tired most of the time.  My diet consisted of various quantities of ham, homemade pasta, homemade pumpkin pie, homemade rice flour pancakes, hash browns, eggs, Ensure, lactose-free ice cream, French fries, and the occasional cut of fillet mignon (which, for some reason, does not bother me).  By March I began feeling tired all of the time and began coming home after school and falling asleep around 4pm.  Several times I overslept and missed dinner and did not wake up until after midnight.  In the middle of the month I came down with the flu, which only made me more exhausted.

After the flu passed I still felt tired all of the time.  It became my pattern to come in after school, do my homework, and then nap from 4pm - 6pm (and I set my alarm to be sure I get up), then cook dinner and relax the rest of the evening.  I never felt fully rested though, just temporarily recharged for the short-term.  The end of the semester was only a month away, so I worked to finish my classes and then planned to take one class over the summer, work at my job, and continue building myself back up.  I increased my vitamins to compensate for the ones I am now missing thanks to my reduced diet and I tried to eat more snacks throughout the day to try and capture some nutrition that way.

But after a while I finally came to the decision that things just weren't working anymore.  I was too tired to do much of anything and was sleeping away all my free time.  I went back to the doctor in mid-April and explained my latest round of problems and decided I was ready to go through with the aforementioned balloon tube treatment.  So on May 8th I went for a colonoscopy and, if my doctor could determine that it's safe to do so, he was to use a balloon tube to try and stretch the strictures and narrowings of my colon open.  There was a risk that the intestine could break when he tries this, and if it did I would need surgery to have it sealed.  I was not looking forward to this treatment, but the time had come where I couldn't keep going like I had been and something had to be done.

My extreme fatigue suggested that I might have inflammation again in addition to the strictures.  If that was the case (and my doctor looked for that when he did the procedure) then there were several options to treat that.  There's always another dose of Remicade (which would make 3 for me) or a new drug just approved in America from the makers of Asacol.  I also had some bloodwork done which might point to my nutrition being bad, which would also cause fatigue.  The results of that were normal in the end, however..  Until the procedure I'll just kept doing what I'd been doing and holding out until May 8th.

Final Exams came and went and I surprised myself by actually staying somewhat healthy during the stressful week.  I passed all my exams and closed out the term with good grades and plans for summer classes.  This summer's class was Physics II.  But before I could get to classes I had to deal with the colonoscopy.  My mother flew down to help me out with the aftermath of the procedure.

The prep for the procedure was the worst part of the entire ordeal.  The day before the colonoscopy I couldn't eat anything and could only drink clear liquids.  I lived on water, cranberry juice, and ginger ale that day.  At 6pm I had to drink 2 ounces of Fleet's phosphosoda mixed with 2 ounces of water.  That signaled my bowels to commence with immediate discomfort and I spent the remainder of the evening in the bathroom and doing a lot of reading, if you catch my drift.  The following morning at 5am I had to administer two Fleet's enemas, which was an altogether all-around bad experience, and let's just leave it at that.

I was at the same day surgery center by 7am.  I had to put on one of those horrible hospital gowns and was given a liquid IV to rehydrate me.  Then I was wheeled into the procedure room, I was given the sedative, and...

... I woke up in recovery.  The results were mixed.  The good news is that my colon is, for the most part, pristine.  There's no inflammation and no troubles apart from the stricture in my large intestine.  The bad news is that the stricture my doctor was hoping to open with the balloon tube is so tightly closed that he was unable to get the tube tool into position to open it.  Therefore he was unable to open the stricture.  I was left the same way as when I went in for the procedure, and since the tube can't fix the problem I will have to have surgery to correct it sometime in the future.

 I saw my doctor for a follow-up visit two weeks later and he had nothing earth-shatteringly new to say.  My nutritional levels were normal, my SED rate was 10 (less than 15 is normal), and my colon was in good shape except for that darn stricture.  He even gave me my own copy of a picture of the aforementioned stricture which you can see by clicking here.  Since the required surgery is a rarity, my doctor is going to contact a team of surgeons across the state to talk with me about the procedure sometime over the summer.  Paperwork and referrals have to be exchanged between the two offices before anybody talks to me about this, so it could be a while before the consultation.  This would be purely a Q&A session and no actual surgery will be performed at this time.

Summer became a low point to my year.  I continued to feel tired all the time, my grades slipped in my Physics lecture course, my diet consisted of a few of the same dishes, I was easily irritated, and I was relying on starch and sugar to fuel my days.  It's very easy to fall into a rut of routine, as I found out.  I stumbled across the summer finish line in early August, but I will have to retake the Physics lecture course (the one bright spot of summer 2002: I passed Physics lab with flying colors) as well as a college departmental exam.  Despite sleeping the afternoons and nights away, I felt that I needed to get away from everything and get some rest.  Actual rest.

I went to visit my parents at their new home in Nebraska, taking two weeks off from work during my time between semesters.  The morning of my flight I had a bad nausea attack and slept during most of my time in the air.  By the time I reached Omaha I felt back to normal.  In Omaha my parents and I stopped at one of the local health food stores to stock up on safe foods.  To my surprise I found a large variety of safe products that I didn't know existed:  unfrozen breads, English muffins, pound cake, pastas, pie crust, crackers, and more.  Finally, I'd be able to fill my diet with actual foods instead of just starchy snacks.  After taking two weeks to rest away from the stresses of work and school (and reenergizing myself with newly-found sandwiches, pies, and pastas) I began to feel like my old self again.  Not the old self from the summer, mind you, or even the spring.  During the time I was in Omaha I didn't need my pain medication and felt up to going out and doing things.  It felt refreshing to get back to normal, especially not totally having realized how bad things had become.  When I left Omaha I left with rediscovered vitality, energy, and a suitcase full of bread and pasta.

  The Fall 2002 semester began in mid August, and I felt ready to get back to living my life.  No more afternoon naps.  No more picking on Skittles and french fries for lunch.  No more going to bed at 9pm because I'm just drop-dead tired.  That was the plan, anyways.  Things started well enough, but by the middle of the semester the old flare-up began to creep back.  Things really fell apart in January when I began to require many days in bed with constant pain medication.  By February I lost the ability to digest solid foods and my diet was reduced to liquids.  By March I was referred to a surgeon and was forced to face the inevitable: surgery.  The plan was to open my two strictures and, if necessary, remove severely damaged intestine.  The procedure was scheduled for May 13, 2003.  As the date approached I put my affairs in order: dropping classes at college to make more time for rest, setting up the ability to work my job from home when needed, and completing my one remaining class via Internet.

My parents came into town the weekend before the procedure. We make the trip to Tampa, FL (surgery was performed at Tampa General Hospital) the day before where, in a hotel, I did the pre-op prep. That consisted of a phosphosoda drink, 3 sets of antibiotic pills, and a suppository... all quite unpleasant. Then Tuesday morning, 5/13/03, we took the shuttlebus from the hotel to the hospital. I checked in, put on the silly gown, took one last look at my un-cut stomach region, and was wheeled to pre-op.... where I was wheeled right back to the waiting room. It seems my doctor had been called to emergency surgery and I would have to wait my turn. About an hour later my time did come, I said my goodbyes, and was returned to the pre-op staging area. An IV tube was installed in my left arm, they checked my vital signs, and before too long I was wheeled into the actual operating room. I was given an initial injection to relax me, and then the full-on sedation occurred. I am told that while I was out they removed both strictures plus a new, unknown one (for a total of three), a large bowel obstruction that I did not know about, two fistulas that had also been missed on all the x-rays, and my appendix since it was basically in the line of surgical fire. I am also told that I spent five hours or so in the recovery ward and that my first coherent words afterwards was a request for a private room (which they were able to get for me before the end of the night). I also found a number of tubes installed in me during this time: a tube up the stomach and out my right nostril to dispose of draining, a catheter to remove trips to the bathroom, and a relocated IV to my right arm. Thankfully they did not have to use any abdominal drains in my procedure.

In the first few days after the surgery itself I was urged from bed to walk around and change gown dressings. I wore a robe and slippers during my times out of bed as I walked/shuffled around the room and hallways. Reglan kept down the nausea and Morphine took care of the pain. I had one of those nice pumps that distributed the drug every six minutes with the push of a button. I was also given routine injections of Pepcin to hold off stomach acid. Zofran was also given as needed for additional nausea aid.

My parents alternated "shifts" in the hospital to make sure that I was given what I was needed, as I was in no condition to walk up to the nurse desk and ask for things. Lucky they were there, too, as we quickly found that some of the nurse staff could be... let us say, less than helpful. I had a vague memory of calling out for pain medication and answers in the recovery room and being ignored by scurrying staff. One of the ditzy nurses in my ward thought it would be funny to draw a detailed face on my wound dressing for some reason. I still cannot explain that one. Another nurse had an ironclad way of doing things and coldly informed me that I would be doing things her way, right down to how I held the television remote control. The rest of the nursing staff were extremely helpful and caring and were quick to help me with any supplies or medication refills that I needed.

By the end of the first week in the hospital I was up and around for brief periods, walking around the floor and alternating my rest from bed to chair. I watched a lot of television. I had brought CDs and books, but I never got around to them - I had no attention span and slept often. My dad left after a week to attend to some business matters back in Nebraska that needed his attention, but thankfully my mom stayed with me the rest of the time to help out and just be there for support. It was also during this period that my IV was moved back to my left arm. I also began drinking little sips of water. The nose tube and catheter had been removed by this time as well. Slight gas pains gave way to some of the worst nausea ever somewhere around Day 7. This was all normal and to be expected, but it didn't make living through it any more easy. Ever had to vomit with a slash in your abdomen? The recoil pains were every bit as painful as they sound and the night seemed to last forever. I cannot be thankful enough that my mom was there to help cool down my fever with cold towels. Within a day though it seemed my bowels had kicked on again and things passed (no pun intended) with much fanfare and hope. I was on track to be released within a day or two.

After a surgical procedure such as mine some bowels need only four days to reawaken. Mine required seven, it seemed. What was initially planned to be only a one week stay in the hospital kept growing longer and longer as my bowels refused to cooperate with what the rest of my body wanted to do. I had done so much walking around the floor that the nurses began admiring my stamina. I grew bored and frustrated quickly. Once my intestines did get with the program I was presented with various "clear" liquids: cranberry juice, Jell-O, and Italian ice. I don't know how these qualify as clear liquids as my own clear liquid diets consist of only transparent drinks. But I was advised to go ahead with them and things kept looking up for me.

Finally, on Day 11, I was told that if I could keep down some actual real honest-to-goodness food then I would be released. Breakfast: dry scrambled eggs. Lunch: Soggy glazed ham slice. This was to be the end of things as I was approved for release just before noon. I was told to wait around another hour or so for a doctor to bring up my prescription for new pain pills. An hour passed. Then another. And another. My mom began to grow impatient at the delays and anytime I asked about the status of this little piece of paper I was told that the doctor would be up "any minute". Sometime after 4pm dinner arrived: sliced prepackaged turkey. It seemed to me that if I could safely digest the hospital's "safe" food, then my own easy-to-digest cooking would be easy to handle.  It wasn't until 5pm that the doctor arrived, gave me the paper, and then said I was free to go. A wheelchair was brought up and I left my little hospital room with the spectacular view of downtown Tampa. I was left with a six inch vertical wound in my abdomen, decreased appetite (as I'm sure my stomach has shrunk to the size of a golf ball by this point), a prescription for Percocet and Reglan pills, and several weeks of recovery ahead of me. My mother returned home to Nebraska two days later and I began the "at home" phase of my recovery.  I spent the next week in bed with limited activity, although the next week I was ready to return to my job on a limited basis.  I regained some of my old favorite foods, including read bread, and sampled some red meat... which brought things to a halt.  I'm not ready for beef yet, but someday soon I will.  Until then I'm quite happy with ham and chicken.

That's my story. As of now (June 2003), I've had two doses of Remicade, am on 125mg of 6MP daily, have developed two intestinal strictures, had them removed along with some intestine during surgery, and I have gained and lost the ability to eat certain forbidden foods as time goes on.   I am living my life to the fullest, which is something I advise each and every one of you to do. Don't let Crohn's Disease stop you from reaching your goals or accomplishing your dreams.

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