Well, saw my GI doctor this morning. Thank God the biopsies he took during my sigmoidoscopy were negative for cancer but it did show moderate inflammation. I told him I was about the same, no better, no worse. He is so frustrated that he can't seem to help me. He talked about increasing the 6MP to 100 mgm. He also talked about Remicade...AGAIN! However, he did mention something disturbing. He knew of two cases where the patient was on Remicade AND 6MP and both patients died. Both were young men in their 20's. Apparently, this happened in Philadelphia. My GI doctor is very friendly with a Remicade specialist from the Univ of Pa Hospital. As a matter of fact, he asked me if I would like a consult with this doctor. What for? I refuse to go on Remicade!
We decided my treatment for now would be slow taper of the prednisone...now on 20 mgm. Try increasing the 6MP to 100mgm (although I think I will just stay at 75 for the next month or so), increase the Cort enema (I mentioned Elaine's doctor's suggestion and he agreed with it) followed by insertion of Canasa. So, it would be two Cort enemas and one Canasa. I asked if the probiotic is DOING anything. He said it wouldn't hurt, so I will stay on it. Still on Colazal too (3 pills 3 x a day). He said that patients with the proctitis seem to be in the most discomfort and it is very hard to treat. If you saw me, you would think I am the picture of health..lol! I lost about five pounds in the three weeks that I last saw him but could be worse. At least I am not bleeding and I thank God for that.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning. Also taking Benicar and Toprol to control high blood pressure. Getting old is a b****.