I currently have Crohn's Colitis, too. Patchy areas just within my large intestine...ulcer here, good intestinal tissue there...2 ulcers here, another spot of healthy tissue there...
The Crohn's has not yet (and hopefully never will) affect my small intestine. But I was still diagnosed with Crohn's based on my extra-intestinal symptoms and my bloodwork and the patchy, bloody ulcers in my large intestine.
Have you had the bloodwork that tests for IBD markers? I'd be a bit nervous, too, about
getting off your maintenance drug. I take Colazal, which is pretty much the same as Asacol (I actually take the generic of Colazal) and it seems to work well for me.
I know how you're feeling, though...lately my brain has been hurting wondering if anyone, including GI's, REALLY knows much about
this disease. There's always conflicting reports...like do we have overactive immune systems, suppressed immune systems or immune systems that just aren't working the way they should? It's frustrating...
PB4, I'm glad you mentioned that about
Imuran...I didn't realize that drug was similar to Asacol.
Diagnosed in October, 2004 at age 32.
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date