I was diagnosed with Ulcerative Colitis in 2000.
After a trip to Mexico, I found myself unable to eat or drink water, losing about 25 pounds. I finally told my husband on the Fourth of July that I needed him to take me to the emergency room. The doctor hydrated me and told me to consult a GI doc. I followed his advice and was quickly diagnosed with UC and put on prednisone and Asacol (between 3 pills, 3 times a day). Last January I suffered a very stressful breakup with my husband and move, triggering a horrific flare. After a colonoscopy, where the doctor told my mom that he’d never seen a colon as inflamed as mine, he put me on Imuran. The drug was horrible, and I contacted Kaiser and told the GI coordinator that I wanted to go back on Asacol and wean off prednisone (which I was on to fight the flare). She agreed, and I had been in remission since March of this year. When I started flaring in March, it wasn’t very bad, so I decided to combat it with diet (low residue). It never got as bad as it did in the past (weight loss, vomiting, diarrhea), so I hoped I could get through it without medical help, but it didn’t work as planned. I was training for my mt. bike racing season, and when the flare got to the point I couldn’t work out anymore, I called my GI office. The PA put me on Prednisone, and within a couple days, I was back eating normally (I have always been able to eat and drink anything) and riding my bike.
Yesterday I had a colonoscopy because the PA thought that my disease must have progressed since my last flare in December ’09. In my narcotic stupor after the procedure, the doctor came to tell me (and my mom) that the inflammation is all the way up the colon except for two small parts of it at the top and bottom. She suggested I get on Remicade. With that I got up and went home. Didn’t speak the entire car ride because I was so devastated. I went into the procedure feeling healthy (I raced my first race of the season last Saturday and didn’t come in last!) and now I was told that I am really sick. Why Remicade?! I sat down at my computer and started looking up everything on this drug. Scary, yes. Life changing, yes. Miracle, yes. But do I need to be on it? I’ve been in remission for long periods of time (symptom-free). I take Asacol daily, and Prednisone has always worked when I have battled a flare (40mg taper). Why are we now talking about what’s considered a “last resort” drug? Has this happened to anyone else? I can’t seem to find those sufferers of UC who don’t really suffer chronically. Believe me, I am grateful for this, but I don’t want to start something that, in my opinion, seems so very drastic. Thoughts?
Asacol 3 pills, 3 times/day, unless battling a flare and then I take 4 pills, 3 times/day
Prednisone (40 mg taper) when flaring
Submitted by “Kimma” in the Colitis Venting Area