OK, I've been reading posts here since I found out that I was going to need surgery about 2 months ago. I will be having step 1 on 9/8/10 and although I am not nervous about the sugery I do constatly question if this is the right thing to do, is there something else I should try, you know all the normal questions.

I have tried remicaide, humira, asacol, lialda, methotrexate nothing worked long term. So, I guess I just wanted to say thanks for everyone that posts here it has been a big help and if anyone would like to assure me that I am doing the right thing, I will take that also. Thanks.

Shon

Shon,

I am about 5 months out from surgery 1 of 3, going in for surgery 2 in about a month. You are doing the right thing. My story was similar to yours-- I tried EVERYTHING and prednisone was the only thing that worked, and then i got dependent on it so every time I weaned off I got sick, and the doctors and surgeons told me while I had a couple more options (I remember something about an experimental drug that gives 25% of people a brain virus), I was basically end of the line and should have the surgery.

I woke up from 1st surgery and felt better immediately- it was amazing. And since then its only gotten better. I have an end ileo right now (what you have between steps 1 and 2), and honestly I could live like this forever. Of course I am going on with steps 2 and 3 because I'd rather not deal with Fred (my stoma) if I don't have to.

You will feel so much better- good luck! Let me know if you have any questions!

Hi Shon,

Welcome to the board. Most of us here have experienced what you described. I, too, tried all that I could and prednisone was the only drug that brought any kind of relief - even though it was literally killing me.

I am three months post 3 j-pouch surgeries and feel great. My life is normal again. It is hard to believe that only such a short time ago UC had devastated every area of my life.

The people on this board are great and I know you will find the encouragement you are seeking. It does get better with time. Hang in there and good luck!

I am 6 weeks post-step 3 (Take down) and after going through all the discomfort of step 1 and 2 I have no regrets. My life is much better prior to surgery. I had been on steriod enemas to keep the UC under control but became very ill and after being misdiagnosed and getting even sicker they realized I had Cushings Syndrome so steriods became so "not an option" for me. Once I was off the steriods the Cushings started to go away but the UC got going full blown. The Doctor tried autoimmune suppressant drugs but I couldn't hold them down and was nauseous and vomitting for four months until surgery to remove my colon. Lost 40 lbs in 4 months. I was really nervous making the decision to go for a J Pouch because I had compromised kidney function from the 1st surgery. My Doctor told me that the J Pouch surgery may help the kidneys so I decided to do it. Boy, I really questioned my decision between the Step 2 and the take down surgery Step 3 because I had to go for 3 times a week hydration to keep my kidneys functioning better. Following the take down I had one top up of IV fluids and haven't needed any more since. Now I am looking forward to returning to work and my life and not having UC rudely interupting me.

you're doing your body a favor by getting off of those meds. Take comfort in that you've got a better chance (90%+) that you'll have a successful surgery outcome compaired to the crappy odds w/ remicade and other drugs.

A lot of us didn't realize how sick we were until surgery. If this is the rout your doctors are recommending, then I'd say trust their judgment. And don't be surprised if your body starts acting normal once you make the decision. My colon started behaving itself months before surgery! I'm so glad I didn't back out.