Surgery for remission cases

I don't have enough experience or study to answer this question, but I'm asking for a friend in my IBD support group. He has UC but has been declared to be in "remission", but his symptoms still seem bad. While he doesn't have bleeding or mucous, his cramping is ridiculous. His GI team keeps telling him they can't find anything, but his suffering is enough that he remains on disability. When he eats a piece of food, he has to have a BM almost immediately. It's also urgent. They're telling him that nothing is medically wrong according to colonoscopy and biopsy, so he's in a weird catch-22.

This has gone on for 5+ years and now he is considering colectomy. His surgeon is willing to go along with it because, according to the surgeon, the majority of people who get UC related colectomies are not actually in dire straits. They are actually dealing with moderate symptoms that are sort of ruining their lives and they get sick of it. He also said these make the best surgery candidates because they are pretty healthy and recover fast. So my friend is considering getting his bowel removed.

Can anyone relate to this? From the support groups online like this one, it seems like the people who get colectomies are all severe cases. I don't really relate to people who are near remission or in remission getting them. What I DO understand is that, as someone in remission, I still have symptoms. I sometimes get urgency depending on what I eat, I still have to watch my diet, if I get stressed I get more transit time. If I eat the wrong things I can get bad gas and cramping. But on the whole, I get to keep my bowel and my life is pretty much normal -- so I would never consider colectomy at this point?

I'm curious what others think. By the way, there's zero judgment here no matter what your view. I respect people who do and don't get surgery. This disease is a really rough gig and we do the best we can! I just never went the surgery route. Cheers

notsosicklygirl said...
I wouldn't have had surgery if my colon was free of inflammation (unless I had another condition that could be improved with surgery). I can't imagine it would cure the symptoms if there's nothing physically "wrong". I had severe symptoms. Lots of pain, loads of trips, blood, mucous, nocturnal trips... up to 30 trips in 24 hours, maybe more. I seriously spent as much time on the toilet as I spent off. It was risky for me to leave the house because I had absolutely no time to get to the toilet before an accident. I avoided accidents by staying home. I couldn't eat if I had to go to work. I would literally eat nothing until after work in the evening, then I'd eat something small and I'd still be concerned about accidents. I would sometimes not eat for longer periods if I had work obligations that required my undivided attention. I wasn't eligible for disability. I have to wonder how your friend, who sounds like they are in no worse condition than I was, was able to swing getting disability...

He had a job with a private disability plan, long-term. So he's covered. If he had to turn to the government I think he would've been rejected by now.

I can't imagine how you went to work with 30 BMs per day and barely eating.

The surgeon told him that if his symptoms are making him miserable and the GI team can't fix them with medical means, then he would be OK doing a colectomy. I have never heard of this, so that's why I'm asking the community here.

You supposedly blocked me so you may not see this.

I did not see any mention of second opinions from a GI, especially one that specializes in IBD at a major medical center.

IBS was my first thought. Small bowel issues like Chrons. There is SIBO that should also be ruled out with a breath test, it produces similar symptoms to what you relayed.

Have they ruled out enzyme issues? Pancreatic enzymes can cause these symptoms.

Colon motility issues might be an issue too.

Surgery is done for Quality of Life reasons, if you can’t function for 5 years I think that qualifies as a QOL issue. If they recommend surgery to me for this issue I’d rule everything else out prior to surgery because it is very final.

I'd say having a colorectal surgery provides no guarantees of fixing his problems (cramping, eating and having immediate urgency). It's also possible he could have more issues after a colorectal surgery. What he is experiencing could just be an IBS, if free of inflammation as you say.

Sure colorectal surgeries happen while people are in remission in the case of dysplasia/colorectal cancer. Would be possible to do even a fast 1-step j-pouch/IPAA due to good patient health, and not being on steroids or immunosuppressents (assuming here).

Are there any known colon muscle motility (movement) issues in his case? Is there any bowel wall thickening (lead-pipe-rectum as seen in xray) with a complete loss of the haustral markings? Is there bowel scaring anywhere that's moderate to severe? I ask as these could explain the diarrhea and urgency.

DBwithUC said...
If there is no inflammation, then the removal of the colon is not a proven cure.

I’m not trying to nitpick but surgery is not considered a “cure”, it is a surgical treatment.

We still have a small amount colon left when we have a jpouch. You can always cuffitis, some get pouchitis and others like myself get chronic pouchitis.

I think if it was an actual cure then more people would have surgery.

It's easy for them to call it a "cure" because it lets them off the hook... but surgery is not without risks and long-term complications. It's not like life is hunky dory after. You still have to live a changed life.

To me "cure" means the bowel that you have is free of disease and you go back to normal. That's a cure.

Calling colectomy a cure is kind of a cop out.

Some people do amitriptyline to help with the Ibs that comes with ibd. Worth asking about that before something like surgery?