Considering Surgery. Advice?

So I’ve had UC for 3 years now and haven’t had much relief. I’ve tried lialda, 4 rounds of pred, uceris, hydrocortisone enemas, Humira and Entyvio. Just stopped taking Entyvio and only on the enemas right now since they help a bit with the urgency. Was going to start xeljanz but it’s looking unlikely as my insurance had denied it twice already.

I go to see my GI Friday and was thinking about bringing up surgery. My UC isn’t as severe as a lot of stories I’ve read but after 3 years I can’t take much more of this. I usually have about 6-8 bms a day with extreme urgency and a ridiculous amount of gas. I’ve had 2 major flares where it felt like I was pooping razor blades and had to go on pred.

I really don’t think I want to try another biologic for a year just for it not to work either. I had no response to Humira or entyvio. I really can’t believe I’m even considering surgery since the thought of it terrifies me. I literally had a panic attack when I got my wisdom teeth removed. But my quality of life sucks. I’m 32 with 2 young kids and I stay exhausted all the time I rarely leave the house except to go to work. My goal everyday is just to make it thru work without having any accidents.

So maybe surgery might be the light at the end of this tunnel? Or would I be just exchanging one set of problems for another. I’ve read a lot of stories where people do great after surgery and some not so great. Any advice is appreciated.

I did try a paleo diet for about 3 months and it didn’t seems to help any. Right now I just stick to low fiber

The healthier you are going into surgery the easier it is to recover from, I was so sick at the time that I had a tough recovery.

It was actually much less painful than I expected. They can give you a Xanax or something similar to help with the anxiety. I was begging for surgery at the time and was excited to have surgery, I felt so much better when I woke up. I was no longer being poisoned from the inside.

My QOL is so much better than when I had my colon even though I still need to take medicine for chronic pouchitis; I sleep through the night, empty about 3 times a day on a regular schedule and eat whatever I want.

Worked for me. Colon was beyond repair. Got my life back

I don't know whether you need a surgery or not. However, it makes sense to get a referral for a no-obligation surgery consult. A question and answer session where you learn what surgery entails and you can ask as many questions as you want from a colorectal surgeon. It's all part of due diligence, doing your homework, and fully understanding your treatment options. Having failed two classes of biologics, the odds of a third working get smaller. Not impossible, but a point of diminishing returns. We've had a few successes on xeljanz when nothing else worked.

I consulted with 2 surgeons months before I decided to go ahead with it. Once I started loseing weight while on meds I knew it was time. Didn't want to be an emergency case like many are. Chose Surgeon /hospital in Manhattan-NYC. NY Presbyterian has Colorectal floor where only Colorectal patients recover. One person to room which is good for recovery. So do some homework now. It will make life easier once u make decision if u go ahead with surgery

I agree with seeing multiple surgeons. I saw a few to see who I wanted to follow my care. I was feeling like I might need it, I had no response to remicade and entyvio. Prednisone did almost nothing. Now I’m on Stelara and it’s working. I don’t know for how long but I won’t dwell. I have chrohns or colitis. Stelara will be approved for UC soon. Surgeons have other ideas too! And I saw a couple different GIs. I say this only to say you could still have hope something may help but also to say I felt at ease once I had a surgeon I liked just in case. I don’t think you can make a wrong decision.

Ah congrats on xeljanz. It's pretty quick working so at least you'll know whether it works without waiting forever. Hope it works for you!