Today is the ninth anniversary of the day I was diagnosed with Crohn's Disease
. It was September 1, 1994
at 4:17pm ET, to be exact. I had been in the hospital for a day after going through a series of intestinal tests and was relaxing as best I could. I had an IV tube in my arm that was pumping fluid into my body to keep me from becoming dehydrated, for I had not been able to keep any food down for the three months prior. I was watching a rerun of Star Trek: The Next Generation
(episode "Captain's Holiday
") when my doctor came into the room and brought me the news: a minor case of Crohn's Disease
. Initially I was just happy that my problem had a name and a history, that it wasn't some new horrible syndrome that they'd name after me and have to start from scratch with. I was thirteen at the time and just days away from starting the eighth grade. The diagnosis brought about swift changes. My diet changed overnight to exclude fruits, vegetables, dairy, chocolate, caffeine, nuts, seeds, fried foods, and other such things. I began taking a series of pills three times a day. I had to watch my energy output and not allow myself to become too tired or to miss a meal. I'd miss a day occassionally due to some stomach pains and I couldn't participate in all the school activities, but I handled things pretty well, looking back on it all.
Two years later in October 1996 I collapsed at school during a midterm exam due to intense pain. Imagine that the creature from Alien was bursting from your stomach and you can imagine my pain. Or consider the worst stomach flu you've ever had, only this one is far worse and never goes away. This is the pain I would live with everyday from this point on. I had to be wheeled out of class and taken to the hospital where, after receiving an IV and brief check over, I was sent home and told nothing new was wrong with me. For the next week my health slingshot from good to bad to better to worse, and one week later I found myself back in the hospital where I would undergo more tests and diagnostics. Liquids were the only foods I was allowed to eat. Over the next eleven days the tests revealed that my case had become moderate instead of minor. I was given new medications and told to adjust my diet yet again, this time focusing on small meals all day long instead of three main meals. I spent the next three months at home recovering from the ordeal. I watched plenty of reruns of Seinfeld and Mad About You and could only drink liquids; food was still out of the question. My first meal was a single slice of turkey on Thanksgiving Day. I returned to the tenth grade in Janauary 1997 and spent the rest of the school year playing catch-up on all the classes I'd missed.
In February 1999 word came that there was a new wonderdrug that could help me: Remicade. It was still somewhat experimental, but I was eager to try anything that could alieve my pains and give me a more normal life. I underwent the infusion and the change was almost instantaneous. The pains vanished! My energy levels were up and I could sneak in a little dairy cream cheese from time to time. I felt better than I had in years. High school graduation came and went and I moved to the Big City over the summer to begin college. I continued cruising along with my remission until August 2000 when the pains returned and my symptoms flared up again. The Remicade was wearing off. I received a second transfusion which returned my good health, but this time the treatment wore off before the end of the year. Plus, by this time my doctor came to realize that Remicade had some nasty long-term side effects. Additional transfusions were out of the question. The major pains returned and I lost the little food perks I'd been able to tolerate in small amounts, such as Oreos and potato chips.
2001 was mainly a lost cause. I missed two weeks of class in the Spring semester and had to battle a professor to receive special arrangements to make up the exam I had missed during this period. My meciation dose was increased and I became more reliant on pain medication. By the end of the year I'd lost the ability to digest wheat products. I lost sandwiches, hamburgers, dinner rolls, crackers, cookies, and most of the other highlights of my diet. I underwent more tests near the end of the year and word came back that I might need surgery. I was determined to put off being sliced open and decided to limp along for a while in the hopes that things would get better. Perhaps, given time, my intestines would heal themselves. I knew this wasn't possible, but false hope was a better choice to me at the time than the surgery. I spent 2002 limping along. I was in pain most of the time and didn't do very much outside of work and classes. Over the summer I lost the ability to eat beef. I underwent more tests and was once again told about the surgical option, but I still resisted. I did not want to be cut open to have my innards layed on a table and studied. The risks, minor as they were, were unacceptable to me.
2003 has been my lowest point yet in my heath. If 2001 was mainly a lost cause, then this year as been a totally lost cause. From January to May I spent all my days in bed. I made it to the occasional class or day of work, but on the whole my time was spent asleep. I required my pain medicine 24/7. I stopped eating as the pain grew too intense. More tests were run and it became obvious that I could not put off the surgery any longer. The operation was scheduled for May 13, 2003. I spent eleven days in the hospital, first dealing with the pains and initial recovery, and then learning to walk and eat again. During the surgery the doctors killed off my muscles temporarily and terminated my breathing so that my body was totally still while they operated. I was placed on life support for the four hour procedure. When I awoke after the surgery I found tubes hooked to every part of me, and as the days went by these tubes were removed one by one. I left the hospital on May 25, 2003 and returned home. I spent June through August working half days and sleeping the afternoons away as I began to take my life back. I've been relying less and less on my pain medicine. I have more energy. I can eat wheat again (although beef still causes problems). I no longer require afternoon naps. I feel like I've come back from the dead, my friends, and it feels damn good to be alive again. I hope that none of you ever have to go through an ordeal like mine, but if you do remember that there is life after a long medical nightmare. You just have to have patience and keep a positive attitude.
If you'd like to learn more about Crohn's Disease please check out the Crohn's/Colitis Foundation of America at http://www.ccfa.org or my own website at http://pages.prodigy.net/mattgreen/. You can also ask me; I'm very open with my illness and am always happy to answer questions.