One step closer to surgery

Sorry to hear that. Did the GI say Stelara or Xeljanz?

I feel so much better since I had surgery. I am one of the unlucky (7-10%) ones who has chronic pouchitis but it's not nearly as bad as UC....not even close.

Have you tried Imuran along with your prednisone cycle. It immediately helped me but then flared up in about a years time but back on another cycle with both and have been normal 6 of last 8yrs. This worked after 18yrs. of suffering thru other treatments.
good luck

Sorry, I can't remember - have you already tried and failed Remicade and/or Humira?

That's what drove me to surgery, nothing worked for me anymore. Remicade, Entyvio, Prednisone etc all failed and my quality of life suffered with nothing to control my symptoms

<<The surgeon's doctors office called and they gave me the first thing they have- April 24- and put me on a cancellation list. She was really nice and asked how bad my symptoms were and I told her they were bad but I didn't say I was going 10-15x a day. Should I have? I feel like that might have made a difference. I just said I had my procedure this am and the doc said it was really bad. I know I can't wait that long. I have been trying to keep positive all day but now I just feel like there is another hurdle in my way. Meanwhile I live like this...or try to.>>

Before my surgery (I was failing on infliximab, had already failed on prednisolone...), when I told my consultant I was keen to have surgery because my symptoms were bad, but didn't spell out the specifics, his first reaction was: "Ok, if you're going for elective surgery, you'll have to go on the waiting list, which will take quite a few months, at least six, maybe up to a year." As soon as I told him how many BMs I was having each day (10-12 at that point, with almost no control), he said he would have been able to admit me to the ward immediately as an emergency case. In that case though, I would be operated on by whichever surgeon was on duty, and in this hospital not every surgeon would perform the colectomy keyhole.

However, I was keen to be operated on by one surgeon in particular (very experienced and with an excellent reputation, and happy to go keyhole). I met him and (when he heard the specifics of my symptoms) was willing to schedule me in for his first available date (which was about three weeks away). I really wanted to go with that particular surgeon, and opted to have a final infliximab infusion to get whatever benefit I could from it, and endure the last few weeks with UC. It worked out fine in the end though.

In your case, I think you need to let them know the specifics of your symptoms.

If you do end up needing surgery, I hope it goes well for you. Life with an ileostomy was great, and now life with a j-pouch is excellent. I'm continually amazed by how normal my life is. I have no regrets about losing my colon.

I am sorry to hear it. I am surprised you haven't tried remicade and surgery is being mentioned. Usually people try a few AntiTNFs before they are presented with surgery. I know what you mean though, just wanting a plan, because you know you can't go on how you are forever. It's no way to live. I had to wait over a month to get in to see the surgeon I wanted to see, it was such a long, torturous month, laden with unbearable symptoms. I went on a consult with another surgeon in the mean-time, she was really smart and qualified. She made me feel a lot better about surgery as an option. Immediately following that consultation, I realized I could do it, I could live through it & I could live a better life.

One thing I can tell you, is that if you have surgery, you will likely not feel the need to post here too often after. I hope you choose to stay, but seems like most people have surgery and move on, while people who are treating, hang around or end up back here eventually.

No, I waited to see the guy who's done 1000s of j-pouches. The woman had a lot of experience too, and came highly recommended. I was very impressed with her, and I think if I had gone that route, it would have went well, but I wanted to go to him, he's considered the best in my city. Plus, right when I met him, he made me laugh, told weird, BAD poop jokes, it made me feel comfortable.

I definitely wouldn't pass up the opportunity to try remicade. Some people have nearly overnight success with it. If you had tried a few antiTNFs without luck, I'd be less positive about your chances of success with it, but considering you've never tried any, i'd imagine your chances of response are good as anyone's.

For most, no. It can take up to 6 weeks for a response.