I had to write because you sound like you're going through EXACTLY what i'm going through. I have been on Colazal for years - since about
2000. I was fairly ok for a while - my flares weren't that bad but over time/years they have gotten worse.
Prednisone helped me the first few times - and put me into remission. But i most recently i was on it for a year and no help ... couldn't get off of it either. I started Remicade in Oct. and it has helped but i still have symptoms. I'm not convinced Remicade is the "cure" i need ... so i'm not sure you're missing a whole lot by not being on it. It did do some wonderful things - it got me off Prednisone, thank god!!!, and it lessened my bathroom trips to about
once every 2-3 hours. However ... either i'm still not on the right dose after 5 treatments or its not going to work as well as i need.
You might want to consider the surgery. The option sucks ... but i have considered it and its not still out of the realm of possibility for me (unfortunately. I really don't want it). There is another medication besides remicade that is an imunosuppressant with human antigen instead of mouse antigen ... but i don't know that that would be a possibility for you either.
I'm sorry you're feeling so bad!
33 year old female - diagnosed with UC 7 years ago. Misdiagnosed since i was 19.
Colazal 3 tablets 3x/day
In the past I have tried Rowasa (no response), and have been on Prednisone for up to a year at a time. I have been flaring for over a year and started Remicade in October, 2007.