My remission lasted about a month and a half...getting so tired of flares. The doctor doesn't want me going back on prednisone AGAIN. It has ruined my bones and raised my blood pressure, not to mention the horrible things it does to my nervous system while taking it. The Colazal and 6 MP just are not cutting it. I started back on the Cort enemas but having a very hard time retaining them.
This is my dilemma.....My GI doctor has been on the band wagon for two years about Remicade. While I was hospitalized last year, his associate took care of me and told me I was absolutely NOT a candidate for Remicade. I tested positive on the skin patch test for TB back in the 60's. Apparently, I was exposed to the TB virus either from my aunt, who suffered from TB, or while working in a hospital lab. My doctor said there is a treatment that would be given me beforehand but didn't go into detail. His associate is dead set against it because he witnessed the death of a patient who received Remicade and it activated the TB virus in her system and she passed away. This scares me to death. The only options left to me because obviously my present meds have ceased working are: Remicade or removal of the rectum, neither which appeal to me. Anything else out there I don't know about which I can suggest to my doctor? I did go to a GI specialist at the Univ of PA hospital and he said he couldn't add anything other than what my doctor was doing. This disease SUCKS!!
I know many of you out there suffer far worse than I do. My bowel movements vary from day to day but the last two days I have had bleeding, mucus and urgency, so I know I am in for it. I worry about rectal cancer since my paternal grandmother died from the disease.