Would like to know those who had to have their J Pouch adjusted. My surgeon and GI dr will confer after he scopes me next week. I have a lot scar tissue and the pain and burning r too often than not. He said possible move pouch down and clean up mucous. This is a 2 part surgery. Not sure if it will be worth it or if I can make it thru 2 operations. He said it's a big deal and it is. He might refer me to Cleveland clinic. I hear about this clinic on this forum a lot. Is it all that? My choices: GI Dr wanted me to try P.T. again and have anal manometry to measure flexibility and maybe the scar tissue can be broken up. Did anyone ever go this route? Give biological meds another try and ones I haven't tried. Have 2 part surgery or back to ostomy. Oh or just live with. I see on here some of u have many surgeries but not a lot of success. Just feels like another temporary fix? Thanks for ur time and input.
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I have had these same issues and I am in the same spot as you...temp ostomy and jpouch rebuild or ditch pouch and perm ostomy. I have scar tissue (stricture) at the anastomosis and always have anal pain and burning due to this.
Does pelvic floor therapy break down scar tissue? Is your scar tissue from repeat inflammation at your cuff? I had anal manometry and mine was at 140 where the norm is 40. I just got back from CC.
Are you on meds now? If so what? Is this 2 part surgery as you need a temp ostomy in between? When my prior surgeon discussed this with me he made it sound very simple...cut out the stricture, drop the pouch down and re-staple (no ostomy needed)..all done transanally with overnight stay. I am not sure if your surgeon is recommending the same thing or not.
These are tough decisions. I was willing to try anything before perm ostomy, but CC surgeon feels these 'fixes' will not solve my real issues and they are also questioning crohn's in my case. I guess this is a very personal decision..more surgery that may or may not not help or get the ostomy and move on with our lives. Good luck with your decision.
Thanks for ur response. Scar tissue from surgery and inflammation. The surgery my Dr is suggesting is 2 part and must have ostomy 1st surgery. He wants to exhaust all avenues first. I still have UC at the cuff and also some IBS. My UC was so severe before takedown it was emergency surgery in 2013.
Best of luck to u also.
I understand. Is he removing the cuff and dropping pouch to handset? I also have bad scarring ( stricture) from surgery and chronic cuffitus. The pain is not fun. Let us know how you make out. Best of luck.
TF, most folks posting here have some problem that makes them seek support. The folks who are doing fine are elsewhere, doing fine. In any case, it's generally a good idea to try reasonable non-surgical strategies before choosing surgery. If surgery is pursued, it's best to get a clear understanding first of 1) what exactly is wrong, and 2) what you can reasonably expect as an outcome.
What do u mean by the first 2 lines of ur reply?
TF, I just noticed that you wrote "I see on here some of u have many surgeries but not a lot of success." I meant that the folks who do have a lot of success typically don't post here, so things look pretty bleak if you count up how well people who post here are doing.
ok , I c what ur saying. Thanks again.