Advice from individuals with multiple ileostomy attempts

So I've had 2 temporary ileostomies and during this takedown, it's been incredibly rough on me. The second attempt at a temporary ileostomy was due to multiple anal fistula tracts and I was perfectly fine for about 6 years until an obstruction slowed down my bowel moments. My surgeon recommended a closure to see if it helps and to at least give it a try.

I'm seriously considering a permanent ileostomy and my surgeon said we'd touch more on it when she returns from vacation in a month to see how I feel. She's mentioned before that if I have issues, she'll give me a "perfect ileostomy."

Out of concern, is it possible to end up with short bowel syndrome in my case or should I be fine? Have other individuals had gone through this case as well?

As always, everyone here is appreciated for their input.

10/8/2212:42 AM

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Pouch2021Member

Hi UP,

Are these temp ileostomies loop or end ileos? I’m assuming loop. I had a hellish time for my 6 months with a loop—so many SBOs, dehydration requiring IVF, etc. The end ileo was much better behaved. Having multiple loops shouldn’t have any bearing on the length of small intestine you’re working with, though I guess theoretically having multiple end ileos with attachment/detachment to/from a pouch may eat up a bit of ileum. Pouch revision can also use up more SI though they can sometimes harvest and reuse the old pouch to make the new reservoir. You generally need to have quite a bit of bowel resected (e.g. due to Crohn’s, malignancy) or have a congenital shortening of the ileum to develop short bowel syndrome. Sounds like you may have Crohn’s so maybe multiple resections? If just pouch formation than unlikely.

10/9/229:02 PM

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Uncle PocketsMember

@Pouch2021 posted:
Hi UP,
Are these temp ileostomies loop or end ileos? I’m assuming loop. I had a hellish time for my 6 months with a loop—so many SBOs, dehydration requiring IVF, etc. The end ileo was much better behaved. Having multiple loops shouldn’t have any bearing on the length of small intestine you’re working with, though I guess theoretically having multiple end ileos with attachment/detachment to/from a pouch may eat up a bit of ileum. Pouch revision can also use up more SI though they can sometimes harvest and reuse the old pouch to make the new reservoir. You generally need to have quite a bit of bowel resected (e.g. due to Crohn’s, malignancy) or have a congenital shortening of the ileum to develop short bowel syndrome. Sounds like you may have Crohn’s so maybe multiple resections? If just pouch formation than unlikely.

This would be for pouch formation, and I had a loop in my case. It seems like it’s Crohn‘s, and I’ve never had to remove anything outside of what was done during my first surgery when the J-Pouch was inserted.

I appreciate your input and any additional information you’d like to add would be nice here.

11/6/221:47 AM

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