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Surgery coming up - concerned I might have Crohns and not UC

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Posted 8/17/2014 8:27 PM (GMT 0)
I’ve had UC for about six or seven years and have tried anything and everything to get in remission but nothing has ever worked. Now because my colon is basically falling apart and I have low-grade dysplasia it’s time for surgery.

I’m trying to decide between a J-pouch or a permanent ileostomy. Unfortunately I can’t have the J-pouch surgery in three steps, which was my original choice, because I have a stricture in my rectum. My surgeon explained that because the stricture was low she couldn’t leave the rectum in.

So now I either have to have a 2 step j-pouch or a permanent ileostomy. I’ve had pancolitis for the past five years and every colonoscopy has come back positive for UC. I’ve always had ileitis backwash but the scope I had in Oct of 2013 showed a stricture at the ileum and now the scope I had at the end of July shows a stricture in the rectum. My GI couldn’t get past the rectum it was so narrow.

I’ve never has any other symptoms that suggest Crohns but aren’t strictures in the colon usual in UC? I’d hate have a j-pouch and still be sick. I realize that I if the j-pouch doesn’t work I could get it removed but j-pouch removal surgery can be especially tough I’ve read.
Posted 8/17/2014 9:37 PM (GMT 0)
I'm bummed to hear the three steps aren't an option, as that is always my #1 recommendation -- it gave me time to decide a j-pouch was really what I wanted, and others here on the board have done the same and decided the perm ileo was the better choice for them.

How married are you to your surgeon -- perhaps a second opinion would be willing to do three steps? It's possible that this surgeon is just very comfortable with a particular way of doing things, and a different surgeon's method might be more flexible in working around the rectal stricture.

If I were you, I think I would lean towards the perm ileo. Whether you truly have Crohn's or UC, you definitely have disease that is disposed towards stricturing, and that's a complication you can continue to experience with the j-pouch that can really cause a poor quality of life. Strictures in the j-pouch that arise as a result of surgery are common and usually really easy to resolve, but if the stricture is arising due to IBD, they can be a lot more stubborn.
Posted 8/17/2014 10:44 PM (GMT 0)
I have Crohn's and several strictures. I am having surgery in October to take everything out, colon, rectum, all gone. I have had a loop ileo for two years (two years exactly today!!!!) and am looking forward to my end ileo.

A second opinion might be a good idea, however depending on where you are, it may be a long wait. I waited two years for my new surgeon to arrive in Canada.

Good luck.
Posted 8/18/2014 12:46 AM (GMT 0)
Judging on the information you provided, I would probably go with a permanent ileostomy if I were in your shoes. At the very least, I'd say get a second opinion if possible. Good luck in whatever choice you make!
Posted 8/18/2014 12:51 AM (GMT 0)
Ileal stricture sounds massively like Crohn's. Didn't they biopsy it to find out?

And frankly I'd rather have 2 surgeries than 3. Can't see how that's a drawback, tbh.
Posted 8/18/2014 1:35 AM (GMT 0)

NiceCupOfTea said...
And frankly I'd rather have 2 surgeries than 3. Can't see how that's a drawback, tbh.

The first surgery of 2 steps creates the j-pouch, so if for some reason you don't want to proceed after that (e.g. if there are signs of Crohn's in the colon after it's removed, or if you just change your mind for whatever reason), then you've at a minimum lost ~12 inches of small bowel. Worse you might need to actually have that removed, which is a bigger surgery, and most people would want to have the loop ileo revised into an end ileo (speaking from experience, loops are significantly harder to manage than ends and more prone to blockage).

Whereas, the first surgery of 3 JUST removes the colon and creates an end ileo. It's very easy to stop there if you decide you like the ileostomy and/or if there are more definitive signs of Crohn's. Some people need to remove the rectum later, but there's no loss of small bowel and you start off with a good end ileo.

Ultimately the creation of a j-pouch is a major procedure that uses up small bowel, and if you're not 100% positive that you want to go forward with the j-pouch, it's better to get the colectomy done without constructing the j-pouch.
Posted 8/18/2014 1:41 AM (GMT 0)
Yes, Pluot. That’s exactly why I wanted to have it done in 3 stages. When I first found out I had ileitis backwash, even before I knew I had strictures, I was concerned I might have Crohns but all tests indicated UC.

The one thing about a end ileo I like is that I’d have one surgery and be done. I’ve had pancolitis for five years. I’ve managed to work and survive but mentally and physically I’m wiped out. I think we’ve all been there.

Thanks so much for the replies, I really appreciate it.
Posted 8/18/2014 2:31 AM (GMT 0)
I don't get it. If I have decided to go for a j-pouch, then I'm going for a j-pouch: I don't need 3 surgeries to make up my mind. Given how awful my single surgery was, there's absolutely no way on earth I'd want to go through the process two more times. I would have the j-pouch surgery in 2 steps if I could.

But that said, an ileal stricture sounds like a massive contraindication to a j-pouch anyway. I had a terminal ileum stricture and my surgeon refused to even consider a j-pouch in my case. (Wasn't really expecting her to agree; just wanted to hear her opinion on the subject.)

Edit: Huh? How did I miss Pluot's reply? Let me go back and read... ¬_¬

Edit 2: Nah, hasn't convinced me. I'd obviously get checked out for Crohn's before surgery, but I wouldn't bother with road-testing an end ileostomy first. People with j-pouches do occasionally revert to having an end ileostomy: it's certainly not impossible.

Post Edited (NiceCupOfTea) : 8/17/2014 8:40:28 PM (GMT-6)

Posted 8/18/2014 2:48 PM (GMT 0)

NiceCupOfTea said...
And frankly I'd rather have 2 surgeries than 3. Can't see how that's a drawback, tbh.

I agree with this as long as you know you are definitely going for a j pouch. I knew without a doubt that's what I wanted. (And I knew I had UC) I'm a believer in the less surgeries the better. My surgeon always does two step procedures unless of course the patient isn't a candidate. I guess there are people who want more time to make up their minds....or they want that solid pathology report on their colon once it's removed to see if it comes back UC or CD.
Posted 8/18/2014 4:06 PM (GMT 0)
Surgeons generally select 3-step surgery when the patient has a recent history of prednisone use or is extremely ill.

Sue
Posted 8/18/2014 6:52 PM (GMT 0)

Pluot said...

How married are you to your surgeon -- perhaps a second opinion would be willing to do three steps? It's possible that this surgeon is just very comfortable with a particular way of doing things, and a different surgeon's method might be more flexible in working around the rectal stricture.

/\ Good advice here. Your situation is different then most of the UC patients here. I'd tried to find a surgeon who has a lot of surgical experience and has operated on a few patients with UC with Possible CD and stritchering issues; they might be able to give you some more insight on this.

I had 3-steps and living with an End Ileo was great but living with the Loop Ileo was very challenging; that 12 inches of small intestine made a big difference for me.
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