Ed's Ulcerative Colitis

Well, it's infusion day and I'm heading over to the infusion center in Tacoma, WA at Digestive Health Specialists to get my Remicade. Things have been well over the last year. I'm still on Lialda, Remicade, and azathioprine (Imuran) and they seem to be working well. I have been on a combination of the 3 (Asacol before Lialda) for almost 4 years now. I still see blood in every stool (not much), but other than that it seems stable. I still have to pace myself. I like to hike in the summer, but I always have to visit the bathroom before I do since walking seems to move things along for me. We got a trailer for camping last year so that when we drive 3 hours to a campground I can feel at ease knowing I'm towing a bathroom behind the truck! Sure is nice not to have to hike to a bathroom in the middle of the night to pee!

I got an email from Lisa asking me about some of my experiences with diet, Remicade, and dealing with the bleeding. Here is my response: --------------------------------- Hi Lisa, Nice to hear about your story. You are the first person I have ever talked to with UC. I see people at the infusion center, but they have walls between us, so I don’t get to talk to anyone. Let me put you at ease a little. Remicade is nothing. I’m used to the IV now and I actually enjoy my infusions since I get to watch TV for 3 hours without guilt. It’s been 3 years and I have never seen a side effect. If you’re as lucky as I was, you will get to taper off prednisone very soon. One warning.. the first time I tried to taper off prednisone (before remicade) I went too fast and ended up in the hospital. My mistake was assuming that all the “side effects” were from the colitis and they were actually from the lack of prednisone. The taper the 2nd time was easier since I had remicade to help. I’m currently on ...

After taking Remicade for a few months I stopped taking Asacol since I thought I didn't need it. After a few months I noticed that my colitis slowly got worse. I told my doctor and he decided to up my dose of Remicade. Since I work for a company that is self insured, I didn't like the idea of my infusions going up an additional $3000 per dose unless it worked. After about 3 infusions it was clear that this was not helping. This was around the summer of 2007. At this point I decided to change doctors and my new doctor gave me a fresh perspective. He increased my dose of Imuran to the max for my weight and put me on Asacol again. It worked! Things got better. So at this point I asked my Dr. to move my dose of Remicade back to the former level and the Dr. approved it. The reduction didn't have any negative effect, so I have stayed at that level ever since. Now about Lialda. I heard about it on TV during an interview of a woman who said she was taking a drug for UC just o...