How did you decide when to have surgery?

I suspect you might have more options than remicade and xeljanz (e.g. did you already try stelara?). Yes xeljanz comes with a black box warning and none of the drugs are risk-free, but neither is surgery....
I have been on xeljanz for 18 months. I was arranging to go for surgery when the xeljanz decided to start working (around 6 weeks after starting it...most responders feel a change in the first week)
The risk with xeljanz is associated with the 2x 10mg dose (per day). That is generally used to induce remission for the first 2-4 months. After reaching remission you can taper down to 2 x5mg per day which is safer.

I suggest you touch base in the Ostomy forum here on more questions you have about surgery and lifestyle. It would be a good resource to start.

In the 17 years here...I've rarely heard anyone mention regret of having surgery. Actually the statement of wishing it was done long before is most usual afterward, even if there are complications subjectively during healing. Remember that some on this forum also have Crohns Colitis...so other CD issues can be continual even after surgery.

If the meds have caused you serious issues...my thoughts are that ultimately, surgery is a definitive.
At the very least...do all the surgery homework and mental prep, etc.

q

I knew I didn't want to take steroids ever again. That made the decision easy for me. I was carrying a lot of extra weight and I hated the way I looked. I didn't want to commit to a life of being overweight and the struggles associated with that. Granted, I was still average size by medical documentation, but the weight looked terrible on my petite frame...

I have been very lucky, no issues since surgery. The surgeries themselves weren't easy and the loop ileo was the worst, but the end ileo was quite easy. If you do a one-step to a proper end ileo, you might end up very happy and feel like you've gotten your life back. One thing you might want to try is wearing a ostomy bag under your clothes to see how you feel.

Ostomies have their challenges, as do jpouches, as does living with uc. Ostomy can make noise, fill with air, need emptying at changing at inconvenient times, requires supplies... Jpouch, you go a lot and people have issues with looseness and anus burning, I clean the toilet a lot but I did that with uc too. With uc, it's drugs, doctors, expenses associated with those things... Uc also means unpredictable, potential for accidents, pain, symptoms, frequency, cramping... They all have ups and downs but living with uncontrolled uc, and steroids, for me, wasn't something I was willing to do. Good luck and let me know if you have questions.

Another thing to think about is age. Surgeries and healing only get more difficult as you get older, so if you think it's only a matter of time, might as well do it sooner. I always felt like I was headed to surgery, and I am sure if I had somehow squeezed my way out of my last flare up, it would have only brought me a short time of remission, then I'd be back at it without anything working and back on steroids and overweight. Not how I want to live my life.

Living with UC there are some positives. The potential for a cure, or a long remission, new drugs. You have to be willing to accept never being back to 'normal' to have surgery.

I'd go with the surgery.

If you're down to one medical option, id personally at least, consult with some surgeons and start getting my head wrapped around what that entails. Even if xeljanz is the magic bullet, it may not, and probably won't, work for you forever. It's good to have a realistic idea of what may be coming your way regarding surgery. Of course, new meds are always in the pipeline, so keep that in the back of your mind when you're consulting. I thought I'd have surgery and the following day there would be a cure. It's been 5 years and not much has changed.

everybody invidual..in ny opinion surgery is a big risk and after you may have lot of problem which you can not solve easily...
year by year coming new medicine to the market...you can try more kind of diets which can help you...dod you try any if them?

I suffered for 7 years with severe UC. It came on fast and strong and never let up. I went through all the remedies that were available at the time. All failed. I didn’t have much choice. I had j pouch surgery 10 years ago and it’s been a God send! Even if I wasn’t a candidate for a j pouch I would have had to have surgery and gotten used to life with an ostomy. Anything is better than living with severe UC. Do your homework and talk to people that have been through it and live it everyday. There are risks with any kind of surgery. Probably not a good idea to take advice on surgery from people who have no experience with it. Best of luck!