Thanks Mitz - I appreciate hearing your perspective. You are right that this is a process and how I am today is not necessarily how I'm going to be in a year, five years, or ten years from now. It's good to hear that Imuran and 6-MP do help give people that "normal" life again. Hopefully, I'll fall into that camp too.
SIR.P - I too have had bad reactions with the 5-ASA drugs (Colazal excluded so far). The more Asacol I took, the runnier, the more liquid, and the more urgent I had to go to the bathroom. Lialda did the same thing. I haven't had the problem with Colazal though. I hope you don't catch your kids colds. Stay well.
Julee -My flares have been pretty bad. Well they started getting bad after I had my DD at 6 weeks postpartum. At the time my DD was having some health issues and the stress of that coupled with the drop in pregnancy hormones likely caused me to flare. Ever since then, my UC has never been the same. Partly because, my UC used to be just on my left side of the colon and then it affected my entire colon because my previous GI waited too long before really doing anything (she just kept increasing my Asacol even though I kept telling her I felt worse the more I took). This was the first time I experienced the horrible cramping, liquid D, sweats, up all night, racing to the bathroom for three months. Up until that point I had NO idea that UC could be that bad, because I had always managed mine with minimal medication, diet, and exercise. I was LUCKY up until then. I finally got a new GI and ever since then, he and I have been battling to get it under control. I've tried all the enemas, suppositories, Asacol (see above, bad reaction when taken in high doses for me), but mostly have been getting by on Prednisone. I had a few months of GREAT remission post prednisone and just on 9 Colazal a day, but then I was experiencing joint pain and my GI wanted to make sure it wasn't the Colazal. He switched me to Lialda and all my symptoms came back and I had to start the prednisone cycle all over again, but this last time the Colazal wasn't/isn't able to hold me in remission, which is why my GI thinks I need to step it up to 6-MP. I'm all for quality of life and wouldn't be so scared if I didn't want to get pregnant again. I just don't know how I will be able to live with myself if something happened to a baby of mine because of a drug I took throughout pregnancy. Oh, I used to have acupuncture and had food sensitivity testing done. Both were great and I felt made a difference, but again this was before my UC was really bad. I'm actually looking into acupuncture and massage therapy again at my hospital. I haven't fully tried the SCD, but always thought if I just ate healthy (avoid refined sugar and red meat mostly) and in moderation that I would be okay, but now I'm wondering if I should give the SCD a try?
Diagnosed UC - 1993
32 year old female
Prednisone - 60 mgs
Soon to start 6-MP...
Colazal (3 pills three times a day)
Probiotic, Folic Acid, Lysine