Skip to main content

I had total colectomy with J-pouch formation earlier this year and have a temp loop ileostomy currently. I am thinking of putting off reanastomosis and keeping the stoma long term. I haven't discussed this with my doctor just yet, as I am still thinking this over. Are there any known negatives to keeping a temp ileostomy long term?
Original Post

Replies sorted oldest to newest

I believe the only thing to think about are the very bottom end remaining rectal cuff issues. But if they are not bothering you now, then you should be ok. I think also you would need scoping every year.. just as a precaution.

When my jpouch failed they gave me a diverting loop ileo.. leaving the jpouch intact. I was told that if I had no problems, I could stay indefinitely that way. In fact one of my stoma nurses had been in that configuration for 7 years.
Lastly, remember when speaking to your surgeon.. he might be jpouch happy - wanting to get you connected and functioning just for his record books. So..keep that perspective in mind.
fq.. just saying that the jpouch surgeries are complicated. And I believe that some doctors want to have a successful history of these on their record. Let's just say when I was in Bob's (the original poster) situation and I enquired with my first surgeon about remaining that way.. he pretty much laughed me out of the room and told me how ridiculous that would be and "why would an attractive young female want to spend her life with an ostomy". He continued on saying "jpouches are the gold standard" and "there are very few complications with them and at worst case... you get a bout of pouchitis but thats cured with a short round of antibiotics." Obviously not true.. as my story tells itself. My jpouch failed completely and I have a permanant ileostomy.

In fact.. as I was being wheeled into the operating room earlier this year to get my jpouch removed a fellow that was participating in my operation.. kept asking my why would I not go for a jpouch redo. And why would a female in particular ever want to live with a permanant ileostomy. Not a great calming pre-surgery interaction. This was at Cleveland Clinic of all places. Whether its unethical or not.. doesn't really matter. This stuff happens. Some of these surgeons have a difficult time understanding "quality of life", have negative ideas about ostomies, and want the success of a technically complicated jpouch surgery added to their record.

I'm not saying all surgeons are like that.. my current surgeon at CC let me work through my decision making process on my own and then congratulated me when I approached him and asked him for my permanant ileostomy surgery so that I could get on with my life.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×