My Story
I am male and about 180 pounds. I was first diagnosed with ulcerative colitis in 1993 at age 25. However, I have probably had the disease longer. I had a flexible sigmoidoscope and barium enema while still in school because of blood I passed on a couple of occasions. In 1993 while I was working in Dallas the typical colitis symptoms came on strong -- diarrhea, rectal bleeding, and stomach cramps. I didn't have a doctor at the time, and I really didn't know what was happening to me. Thankfully I had a desire to eat and did not get nauseous or too weak to work. I was going to the restroom probably 6-8 times daily, but never do I recall not making it there in time. So I just kept going, thinking foolishly that it would all pass in time. Of course, it didn't. Finally, I went to see a doctor of internal medicine. (I didn't know at that time what a gastroenterologist was.) The doctor performed a flexible sigmoidoscope (my second) and later had a gastroenterologist do a colonoscopy to verify the results. The lower half of my colon was inflamed. After being properly diagnosed, I was placed on a regimen of Prednisone and Sulfasalazine. (Sorry I don't recall the dose, but the Pred was probably around 20 mg.) Over the next several months this combination of medicine did the trick in getting my UC under control. I continued to improve and then slowly reduced the Pred.
I left Dallas in early 1994 and went into business with a friend in Mississippi. After the symptoms completely subsided (and without the guidance of any doctor), I slowly took myself off of Prednisone and then Sulfasalazine. Going completely without any maintenance drug and not getting a new doctor were things I would later regret. I was lucky; for almost two years I was in remission. I didn't take any medicine, and I didn't see any doctor. When the symptoms came back in 1996, of course I knew what was happening. I thought if I rested more and took vitamins I could get it back under control myself. I see now how foolish this thinking was. My UC quickly got out of control. I didn't eat or even feel like eating. I was running a fever, especially at night. I didn't have the energy to get out of bed. I was running to the restroom 10-12 times daily, and a few times I didn't make it in time. The worst memory I had was sitting on the john and throwing up in the sink at the same time. I really wanted to die. I prayed to God that if this were what the rest of my life was going to be like, then I wanted to die now. After I admitted it wasn't getting better on its own, I went to the only gastroenterologist in town.
I saw the doctor a few times. All visits required waiting in a crowded reception room for at least an hour, sometimes two. My 10-minute visit would always result in the same talk. He only believed in Asacol and would not prescribe Prednisone or any other steroid or anti-inflammatory drug. Many people in town really liked this guy, but I tell you if I had not found another doctor I would not be here writing this now. Asacol alone would never have gotten my colitis under control. He performed a colonoscopy on me (my second), and then I took those results to a gastroenterologist in Jackson, Mississippi.
My new doctor placed me on Prednisone and Asacol. Prednisone went as high as 40 mg and the Asacol to 12 pills a day. We even played around with Imuran, Flagyl, and cortisone enemas. I had trouble even swallowing Prednisone because I was so nauseous. Sometimes I would throw up taking them and have to start all over again. It might take 30 minutes to get a few pills down. During the course of this lengthy flare I had passed enough blood to become borderline anemic. My mouth would get so dry that I would gag if I didn't continually keep a piece of candy or cough drop in my mouth. A few times my lower back would hurt so badly during the night that I thought knives must be sticking in it. I had to get up and sit upright in a chair for a while before the pain subsided. I also had trouble with my right knee, which would ache especially in the car. My left side would hurt, like a kidney infection. (Left side pain is common with UC because the lower colon is on your left side.) All of these things were investigated by my doctor with x-rays and ultrasounds, but they were never explained. My feet would also hurt (and I don't stand on them all day at work). The podiatrist says that a lot of people with UC have foot problems, especially the heal. The problem is mostly solved if I place good support inserts in all my shoes. After many months the UC was tamed enough I could eat and function again. At the time, the only medicine I had any hope for was the Pred. Everyone said it had bad side effects, but it was the only thing that worked before, and I had faith it would work again. I don't believe my other medications were effective, although cort enemas did seem to give temporary relief and help me sleep through the night.
When I moved to Jackson, seeing my gastroenterologist became much easier. Through the course of the next years I made progress and had setbacks. I had a flare here and there, so I would reduce or increase Prednisone as needed. I experimented with alternative therapies such as taking Cat's Claw, Glutamine, EPA (Omega-3 fish oil), and the Nicotine patch. They didn't seem to do much for me. I never was lucky enough to get off of Pred for a single day. One thing I learned was not to reduce the Pred unless my feces were firm. I often got overzealous in wanting off Pred and reduced it too fast. However, I learned the faster I recognized I was getting worse and increased the Pred, the faster I would feel better. Even though I was not experiencing any serious side effects from the Pred, my doctor became increasingly worried that I would. He gave me another colonoscopy (my third). He started talking more about surgery. I really didn't want to listen to that, so he suggested I see a specialist at Ochsners. I made the trip to New Orleans in 1999 and listened to him tell me my best option was to remove the colon. I then would be able to stop all this medication and live "normally" again. The only other suggestion he made was to push the Imuran until the white blood cell count was lowered. For me, that was around 175 mg daily. Even at that level, I couldn't seem to get off Pred completely without worsening symptoms.
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