As an aside why I am not on any steriods and why I just started Asacol:
When I was originally diagnosed with UC, I was hospitalized. I was given IV solumedrol. My blood sugar went out of control, ended up needing insulin injections. They discharged me (when I was really no better, thanks to the lovely insurance company but this isn't the place to get into that) on 80 mgs of prednisone, Asacol 2 pills (800 mgs) 3 times per day, and I was checking my blood sugar and giving myself insulin injections 2-3 times per day depending on my numbers. I continued to bleed and go to the bathroom upwards of 30 times per day. I finally went back to the ER and was admitted again. IV solumedrol again, lots of enemas and supositories. Really no better on that protocol after 7 days in there. Finally (since I had been on the 'net while I was there and researching) I asked about Remicade. They reluctantly agreed to let me try, reluctantly because I'm a physical therapist and have to work with a lot of people every day and they didn't want me to get an infection as a result. I told them it was worth it to me to keep my colon. So I got my first dose in the hospital, DRASTIC improvements by the next day. Discharged home on only Prednisone as I had to taper off of it. It took months and when I was finally down to 15 mgs a day I wasn't needing insulin anymore, thankfully! Dealt with all the side effects, I couldn't sleep, I was irratable, gained a lot of weight (I needed to anyway as I was down to 105# from 135), lost 80% of my hair, etc...
Basically I was told that my UC is "steriod refractory" meaning that it doesn't respond at all to that kind of medication. I was fine from that first infusion (The first week of October 2008) until my last 8 week session. I started getting some blood on my formed BMs in the 6th week. It went away on its own, even before the next infusion.
Now this "flare" has been about 4 weeks long so far. Last night and This am was the worst day by far. The bleeding started again in my 6th week after the last Remicade infusion. I waited a week to call the Dr because last time it went away on its own. It gradually progressed to bloody D and finally I called him. As the place where I go for my infusions is a busy "Cancer Center" it was hard to get my appointment moved up. He managed to do it by only 2 days. I didn't get better right away as I had before. It took a few days, but then I was left with some urgency and really soft BMs a few times per day. I could live with that but it wasn't as good as it had been before so I called him. That's when he told me to go back on the Asacol and re-contemplate the surgery.
I just know from being on here and reading a lot of other stuff that there are other treatment options that we haven't tried. My current GI doc is just a community based general gastroenterologist. I asked him how many UC patients on Remicade he has and he said 2. That's when I decided that I was going to get another opinion. I made an appointment (and supprisingly it was only 4 days away) with an IBD specialist at the Cleveland Clinic. He sees only Crohn's and Colitis patients. I am sure that he will know a lot more and have other treatment options!
I called my Primary Care doc today and she wrote me a script for Ultram (a pain med that you can take that won't make you bleed). Oh, how much better I feel this pm after taking just one of those buggers!
Anyway that's the long story!
Diagnosed with UC September 2008
Just started taking Asacol 1200 mgs 3 x per day 5/7/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day