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Scheduled for mucousectomy to repair partial prolapse of flap that developed in my 2.5 year old pouch. It prolapses when I go to bathroom, and I can never empty. Initially, it caused me to go again 1-2 times. Now it seems I often have clusters of 3-5 return visits after BM. Going well over 25 times a day. Surgeon found flap during  scope and thinks mucousectomy will help. I understand inherent risks of incontinence due to this procedure, and so many other risks of surgery (nicking other organs, anesthesia, etc) but as he described surgery in our follow up, he laid out many other risks. We had talked about possible temporary ileo allowing pouch to heal after mucousectomy. Is this typical or frequent? He also said if he's not happy with repair and pouch advancement that it could end up being open surgery to allow better access. I get that but, also said  possibility he would redo pouch if necessary, and if trouble connecting/ stretching it that far could result in permant ostomy. While I know he's a skilled surgeon, and operates on lots of patients with pouch problems, I am wondering if these possibilities (redo and permanent ostomy) are out of line with norm. He doesn't expect  these and promised to do his best, but wouldn't give %, so I don't know if he's just covering the bases or are those real possibilities, even if rare? If others have had mucousectomy at CC or other, were you warned of these other possible outcomes/worst case scenarios. Maybe I'm over sensitive, but am bit alarmed. I will check to see if he does the BCIR, though he didn't mention. Don't know if you can go back and do BCIR after ostomy or does it need to be done at time of poych removal. I'm Just not sure I'm ready to proceed with this surgery, given the possible outcomes. Want a better QOL, but manage most days.

I greatly appreciate all on this site who help others navigate these very muddy waters! And encourage and support as well!

Thank you!

laurie.  Ljz

 

Tags: mucousectomy, risks, outcomes, surgery

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Well, one thing to keep in mind is the fact that your complication is rather rare, so there's not a ton of data out there. Your doctor cannot give you odds because there just not enough data to state the odds one way or the other. As it usually is in these complex cases, it is not known exactly what needs to be done until they are in there and see it. This is why the different scenarios are presented to you. Unsettling as they may be, it is far worse to be assured you have an 80% or whatever chance of success and wake up blindsided with an ostomy. This is where you just have to put trust in your surgeon. He must feel it is in your best interest or he would not proceed. It is normal to be frightened by the possibilities, but even with the worst case scenario you will be OK. Things must be pretty bad for you to accept surgery, so remember that. Almost everyone here who had a pouch advancement or redo are happy with their results.

Also, if an ileostomy is necessary, you can wait as long as you want for a continent ileostomy, as long as you have enough small bowel. That will not change. Future adhesions might make it a little more difficult, but not impossible.

Jan

Jan Dollar

Thanks Jan!

still deciding if my condition bad enough to take surgical risk of possible permanent ileo. Don't know if the prolapse will get worse so may just live with it - not great and does limit me from doing things but minimal pain until I've reached 30+ BMs day or eaten wrong foods. Know no surgery is without risk, but had really hoped to improve my QOL for a few more years. Never easy decisions, though like many the first pouch was a no brainer because of how miserable I was/ we were!

thanks!

laurie

L

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