I know your pain. My flares of ulcerative proctitis are getting closer and closer together with my last remission only lasting from Nov of 08 to May of 09. Still flaring but down to 10 mgm of prednisone. I am not a candidate for Remicade but from most of what I read here, I am glad I am not. The doctor had me on 100 mgm of 6MP this last time but it sent my WBC down to 1.6 and now he stopped it for a few weeks to see if it will come back up. I really doubt I will even go back on it...it does nothing to keep me out of flares.
Sorry I cannot offer you any advice except for the fact that you are going to the best place for treatment. Do you live in Ohio? My GI doctor is sending me over to the Univ of PA hospital in Philly. I have an appointment with a Dr. Leichenstein on Sept 24th. Waiting since the beginning of July to see this guy.
My bowel movements are formed but usually have pain while passing normal sized stool. I am not bleeding anymore though. Good luck to you.
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****.