I went to a GI surgeon last year after my hospitalization. His opinion was that my case was considered moderate, not severe and surgery at my age and with my risk factors would be prone to a lot of complications and my quality of life, if I survived the surgery, wouldn't be any better than it is now, if not worse. At the moment, my only complaint is that I have rectal discomfort, no bleeding, no diarrhea, no nausea. From reading the posts, there are a lot worse cases than me. My GI doctor said that if it were possible to just cut out the affected area it would be a cinch but unfortunately ulcerative proctitis has a tendency to move up the intestinal tract.
I was exposed to the TB virus and test positive on the skin patch test. My chest xray is normal but the TB virus is dormant in my system and Remicade could activate it. Also, from what I have read in the posts, Remicade doesn't work in a lot of cases or stops working after so many infusions.
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare. Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count. Now off the 6MP pending results of repeat white count. UGH.