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Hey guys - I was all set for the Jpouch surgery but my latest colonscopy diagnosis changed from Ulcerative Colitis to probably Crohn's because of microscopic granulomas and microscopic terminal ileum involvement with microscopic granuloma so now I am re-considering surgical options. I am currently taking a biologic called Vedolizumab. Can you guys give me advice? I saw a surgeon at Cleveland Clinic and at Mayo Clinic and got the following advice:

(1) Cleveland Clinic surgeon said we can still do the Jpouch surgery even with confirmed Crohn's because I don't have any signs of disease in the upper GI and that my TI disease is microscopic. He said we would start with subtotal colectomy and that the rectum would heal after step 1 because stool isn't going through. He said I would need to continue meds before and after surgery to try to make sure disease doesn't reoccur.

(2) Mayo Clinic surgeon said that we can do surgery but it would be an ileorectal anasmosis if it is confirmed Crohn's after colon sent to pathology. I questioned how we can do ileorectal when my rectum is not spared and in such bad condition. He said, kinda like CC surgeon, that the disease in the rectum often becomes quiescent after stool doesn't go through and I would need to continue meds in between surgeries and after.

So, both surgeons seem to agree that the rectum will get better once still doesn't go through. This brings up a question that I forgot to ask and I might email them.

This is my question that I am pondering: What if I did a temporary colostomy to give the rectum and sigmoid time to heal since they are the only parts that have Gross disease (the rest of the colon is microscopic and responding to vedolizumab). The temporary colostomy could be diverted at the splenic fixture. As the surgeons say, this would allow the rectum and sigmoid to heal since no stool is going through. I would continue taking my vedolizumab medicine before and after the surgery. Then if and when the rectum and sigmoid heal up, I could reconnect and then see what happens. It is kinda similar to the mayo clinic surgeon's suggestion but better in that the colon is retained. What do you think of this? The advantages are I get time to gain health back with diversion, I continue taking vedolizumab to keep inflamation under control, rectum and sigmoid get chance to heal up with stool not passing through and vedolizuamb medicine plus enemas and other rectal meds, and I minimize loss of intestine which is important with Crohn's diagnosis.

Would greatly appreciate everyone's advice before I ask the surgeon about this!
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Your question about doing a colostomy sounds like an awful big "what if" to put yourself through surgery. I just don't know much about your situation to really give any advice but I do know this: If they are saying you have CD, then I would not get a j pouch. If you indeed have CD and even if it's only microscopic now, you could be in a world of hurt later on down the road with a j pouch if the Crohn's progresses.

They are saying "probably Crohn's". Is there any other testing you are having done? For a while they thought I had Crohn's too but after a while of testing they confirmed my UC dx. Well, with as much certainty as they could.
From what I've read, those with Crohn's colitis may be good j-pouch candidates, IF there is no small bowel involvement or perianal disease. The big question is whether that bit of small bowel inflammation is considered small bowel Crohn's or just backwash ileitis from pancolitis. Personally, I'd avoid the ileorectal.

The main thing is to discuss all your options with your GI and surgeon. You have chosen Cleveland Clinic as your treatment facility, so if it were me, I would try not to second guess everyone and bounce back and forth between opinions. Certainly, you will still have Crohn's regardless of what option you choose. Each case should be decided individually, based on the risks in your specific case, and what risks you are willing to accept.

Jan Smiler
Thanks guys - for now, I am not doing the Jpouch.

Do you think the surgeons would entertain my request for a diversion from the colon and keep the colon intact? I'd basically have a stoma at the splenic fixture of the colon right before the ascending colon so that the rectum and sigmoid can heal up or as the surgeon says become "queiscent."
I think you are misinterpreting what your docs are telling you. They are saying that the rectum tends to improve during diversion (sometimes it does not, actually, and diversion makes it worse, but that is a different issue). They are NOT saying it is appropriate to leave the colon in place, and divert it, in order to heal it. It does not work that way. If it did, then being on TPN and total bowel rest would do the same thing. It doesn't, generally. I could see a colostomy as an emergency thing if you could not tolerate (survive) colectomy. Maybe they might go for it, but I'd be doubtful.

Jan Smiler

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