i have had my jpouch for 10 years, the last 5 have been minor problematic with the last 2 or so being much worse. I have had several procedures in the last few months and will still need to have a couple more. So far the things that are supposed to make me feel better are making things worse. They reassure me that eventually it will get better but I’m not sure I can take much more. I am seriously considering having my jpouch removed and permanent ileostomy. Just wondering for people that have gone back to ileostomy what issues have you had? My really biggest fear is skin irritation & leaks, I had issues with that with my temp. How often would you say leaks are an issue for you?
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Hi - I have had an end ileostomy and a loop, and for me it was night and day. The end was much better and the stoma was further from the skin. I am getting ready for the take down, and have not had a J Pouch go live yet, so my comments may not be super helpful. Nonetheless, I have done a bunch of research and it looks like if the J Pouch sadly fails - going to an end ileostomy of very often successful and easier to manage than a loop. Good luck.
So far, majority of stories/threads that I have read on here are often positive of going back to an ileostomy. I do not hear too many issues after switching. Before you get your J-pouch removed, would you like to get a second opinion first so you do not have any regrets???
What issues are you having ?
I have several fistulas and a leak in my jpouch that has created an abscess near my tailbone. I have a rectal vaginal fistula with seton placement, that still causes pain and has bleeding and stool leaking. I recently had a drain tube in to try and drain the abscess near my tailbone, once they removed that they put in stints in the three openings my jpouch has so that it will drain back into my jpouch instead of that area near my tailbone. After the stint placement, it migrated and started coming out of my rectum and I ended up in the hospital to have it replaced. The stints are now back in place but I am still having constant tailbone pain and the feeling of needing to have a bowel movement constantly but having extreme difficulty actually going. They said there is also some inflammation in my jpouch and have me doing steroid suppositories which doesn’t seem to be helping at all.
@Rborth posted:I have several fistulas and a leak in my jpouch that has created an abscess near my tailbone. I have a rectal vaginal fistula with seton placement, that still causes pain and has bleeding and stool leaking. I recently had a drain tube in to try and drain the abscess near my tailbone, once they removed that they put in stints in the three openings my jpouch has so that it will drain back into my jpouch instead of that area near my tailbone. After the stint placement, it migrated and started coming out of my rectum and I ended up in the hospital to have it replaced. The stints are now back in place but I am still having constant tailbone pain and the feeling of needing to have a bowel movement constantly but having extreme difficulty actually going. They said there is also some inflammation in my jpouch and have me doing steroid suppositories which doesn’t seem to be helping at all.
I am sorry to hear all of that! I do not blame you for wanting to get it removed, I would do the same thing this point. Do you want an ostomy or K-pouch???