I've had my J-pouch almost 25 years - and I just found this group!! How I wish I had found it years ago. For the most part, I've been great. I haven't used any meds to manage my output; I just knew certain things caused certain problems and dealt with anything bad that happened on my own. Until about 12 years ago, when my output just seemed to change overnight. They found a stricture at the inlet, which they've been watching since. Still haven't really had too many problems - although I am now finding out from all of you here that 20 BMs a day is not normal, and I should have been managing it. I didn't know. I never complained about it. It wasn't causing me any physical pain; i just assumed it was normal. Over the past few years, it has been getting increasingly difficult to empty the pouch, and I will sit forever waiting and push for it to feel like it is finally emptied. This has (of course) caused a fissure, which has been incessant and painful on and off for several years. But my main concern is it seems to be getting more and more difficult to empty the pouch, and I am very worried about pouch failure. I'm just wondering if anyone out there has experienced this, had pouch failure, what happened for you, what did you do, does this sound like I'm getting ready to have a failure? Any input would be valuable. Thank you!
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It sounds to me very much like long term untreated pouchitis. You need a scope and proper treatment which might be antibiotics and might be biologics. You need to get with a pouch specialist and establish a treatment plan. Good luck.
Hi CT! I do have scopes every other year (two this past year because of the stricture), but no treatment plan per se. Some inflammation was noticed on the last two at the stricture site, but no other problems. I have had several bouts of pouchitis over the years, and this definitely does not feel like that. I have no abdominal pain or any pain at all other than the fissure. 
And I am terrified of having to go back to a stoma!
Eleven years ago, I developed a condition that made it necessary to remove my J pouch. I strongly did not want a conventional ileostomy with its associated issues and opted to get a continent ileostomy that does not require having an external bag. The procedure went very well and I have a very good quality of life as a result. I published an article entitled "Researching My Options" that tells in detail about my experience. You can find this article on the Quality Life Association's web site (www.qla-ostomy.org) under the "Ostomy Options and Education" tab. You can also obtain the video recording of the latest QLA Conference that contains presentations of four leading K pouch surgeons and other information about continent pouches.
A pouch inlet stricture can feel like difficulty emptying, even when the pouch is actually empty. Pressure on the ileum (while it struggles to fill the pouch) and pressure on the pouch both just feel like pressure. Perhaps the stricture needs to be carefully dilated? I agree that you may have had untreated pouchitis all along, but that’s a guess. It’s possible that a simple course of antibiotics will help immeasurably, but that will only be sufficient if the stricture is still letting stool flow into the pouch.
It’s premature to discuss the prospect of pouch failure, I think. In the context of appropriate healthcare pouch failure should only occur when a properly diagnosed condition has failed all reasonable attempts at treatment.
I have an appointment with my surgeon today; he's going to take a peek at the fissure and anything else he can see with an office procedure. My concern today is the pain from the fissure. But I will certainly discuss all of this with him. I appreciate all of you!
Elissamarie,
Because I was short on time with my earlier post, I neglected to mention that I too have had a stricture at the J pouch inlet, which is very common in older pouches due to backsplash stool and resulting pooling and SIBO at and above the inlet. You start with the anatomical and mechanical fact that the J Pouch has no backsplash valve like the colon, and over time there is a bacterial/inflammatory wear and tear on the inlet that likely causes a stricture. Due to backsplashing stool. Many other older pouch patients have reported this. My stricture was noted and observed at the 20 year mark, and for the ensuing 10 years up until pouch age 30, my GI doctor told me "if I can't get scope through the inlet you're getting dilated." Finally in summer of 2021 he had difficulties getting scope through the inlet. So he sent me over to an awesome advanced endoscopist at Yale who did a series of 3 dilations on me so that I went from 7 mm to 18 mm. There is a thread I started on that and I will post it here. So the inlet stricture is very common and treatable.
See this thread which discussed my EBD:
https://www.j-pouch.org/topic/...pic-balloon-dilation
Since the 3 dilations chronicled in that thread, last of which was January 2022, I have been good.