Skip to main content

Reply to "saw surgeon-suggesting 3 month ostomy w pouch advancement. Questions"

I can say that "I feel your pain" with regard to considering a permanent ileostomy; that is where I am now.  I've had my pouch since 1999  ( by Dr. Fazio at Cleveland Clinic) and it doesn't seem to work for me anymore causing a loss of quality of life.  15-20 BMs per day, up several times a night, almost constant cramping alleviated only 1200 -1400 mg of ibuprofen daily, and now moderate incontinence. .  Also lots of butt burn.   I can't walk long distances or hike anymore unless I know there is a bathroom nearby. I don't have pouchitis, take 500 mg of Cipro daily, but it is not getting better.

  I am now seeing a colo-rectal surgeon at University of Pennsylvania , and she feels that doing a loop ileostomy is the way to go to alleviate my symptoms.  She says it is a much simpler procedure than a complete removal which is unnecessary for me.  She says that she has seen this in other patients where the pouch just doesn't work well any more and there is not much else they can do, and the ileostomy greatly improves quality of life.

  I would also like to hear from people who have reached the point where they decided it was better to have the ileostomy than deal with ongoing pouch problems.

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×