Hi UCinNC,
I am very glad that I have made a firm decision. I think the "straw" was the "brain damage" that I got from my doctor when I called to get my prednsione filled when I hit "5mg" again and started to flare. I was emotional anyway and then the nurse was saying how he didn't really want to fill it without seeing me blah, blah, blah. Like you, I knew remicade was not a choice for me and imuran and 6mp didn't work and asacol was not controling it. IF I could stay on prednsione forever, I would. I have lost weight even and have no side effects other than maybe a little puffy face when I am on 20mg but once I hit 10mg (which I am symtom free with), I don't even have a puffy face. I am 40 yrs old and I think that is destiny that I will loose my colon. I have tried some homepathic stuff and have done the SCD religiously but nothing gets me off prednsione. I have really tried to be a perfect patient and still doesn't work. Also, nausea on 5mg makes me really want to "throw in the towel" because I struggle to eat and all my bm's are water so, at that point, I could cut my own colon out. I decided, finally, that if I do surgery then I could be on the road to recovery opposed to the constant "road of the day-to-day unknown" with UC. Every day with UC is unpredictable on low doses of prednsione and no prednsione I know I would be in the hospital vomiting, anemic and dead. I just want to get better so I am hoping to live with this bag for 9 mths and then have a healthy working j-pouch and be done and off all med's. I know that this is long-winded, sorry, but I guess it feels good to express how I have come to my decision making process.....it was a big one.