Hi everyone, I've lurked on this board for almost 2 years now, but have finally just started posting.
I'm 36 and was diagnosed with UC when I was 25. I had a very mild case for a long time and it was controlled by Asacol, but over the years it got worse and the Asacol was increased until I was finally on the max dose. Then it really stopped working all together. I have also tried Lialda, Rowasa enemas, some powder substance that you drink twice a day, I think, and Remicade, which did NOTHING for me. I finally started taking prednisone - which I'd been fighting for years - and it helped! So much! But...after a while, I got the bad symptoms. Huge weight gain (54lbs), couldn't sleep for anything, I became a roaring bitch.
We would decrease it down and I'd flare up and we'd increase it again. The dr wanted me to try 6mp. After reading up on it, I decided I did not want to put that in my body and told him I wanted the surgery. He didn't hesitate.
I had steps 1 and 2 on 6/29/10 at Johns Hopkins and then my takedown on 8/31/10 at Johns Hopkins. I think 6/29 was the start of the worst time of my left and 8/31 was the start of the best time of my life. While I'm not 100%, and I know I never will be, I have gone from about 20% to about 90% and I'm so happy with that. I still go a lot more than most people and will never have solid stools, but I have gotten my life back. I can go out to restaurants, I can be on the softball field for hours without having to run to the woods or the portapotty, I can go on long car rides (MD to FL!) without worry. It's been WONDERFUL! I have the occasional upset stomach, but nothing like I dealt with before. I am off of all mandatory meds and now take only Lomotil when I need it, and birth control which is my choice.
I just wanted to introduce myself and say hi to everyone and thanks for all of the info over the last couple of years, even if I'm late in thanking you.
-K
