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I have had my pouch for 14 years now and have dealt with chronic pouchitis and cuffitis most of that time. Meds have helped and overall, it has been a good experience. The last year or so, things have gotten more interesting. I started having trouble emptying and have used enemas more and more just to empty fully in one go instead of many not very productive ones. The last month or so, I have had more and more trouble emptying. I have seen my GI a lot, had many scopes and recently saw a surgeon who put me on Uceris. I am also on Humira, rotate antibiotics and take VSL. 

I saw the surgeon a week ago and she did an exam and told me to stay on Uceris. She said she believes I will eventually need to have the pouch removed as I am not a candidate for redo. Since I saw her, I can barely pass stool and have to use an enema 95% of the time. I am not even getting urges most of the time. The day just ends and I realize I have not gone all day and I go deal with it. 

I will call my GI doc Monday, but in the meantime, has anyone experienced this? It is like my system is just giving up. I have a dull, weak pain on the right side of my stomach, but otherwise, no pain. Any words of wisdom?

Original Post

I’m sorry. Have any of your doctors expressed an opinion about why you’re unable to pass stool, or are they just shrugging? Since the pouch lacks the muscles of the rectum, external muscles (and gravity) normally do the job. Assuming that there’s no Internal blockage, the stool consistency is reasonable, and your sphincter relaxes properly, I wonder if the muscles have gotten weaker and less coordinated as you’ve used them less and less. If that’s the case then it’s possible that you might get some benefit from pelvic floor physical therapy. Another possibility is pouch prolapse, which can’t be detected with an ordinary exam.

Thank you, Scott. I appreciate your help anytime I post. 

My surgeon said the reason I struggle to pass stool is because I have a stricture where the pouch is attached. According to her, the narrowing makes it so stool won't pass. She says that where my stricture is, it would not be possible to put in a stent as it is in a place that people cannot tolerate. I was too shocked to ask about dilation, but I think that would be pretty painful too. The strange thing about this is that I knew I had a narrowing going on, but it comes and goes. She said strictures don't usually do that. Right now, it does not seem too bad, but I have had this strange disassociation thing going on where I just feel, not numb, but out-of-contact with my guts. That is not the best explanation, but I cannot think of any other way to say it.

I have thought about the muscle thing. It makes sense that if I use enemas too much the muscles will atrophy. I am going to search pouch prolapse to see what I can find.

kta, the stricture alone would probably explain your problem, making muscle atrophy or prolapse much less likely. Dilation is the usual treatment, often done under anesthesia, and sometimes needing to be repeated a few times. If your stricture has never been dilated then I’m not sure why the surgeon would be talking about pouch removal, but perhaps there’s more to the story.

She did not even mention dilation. I do not even know this woman well. She came highly recommended by my old gastro, I just changed, mainly due to a lack of ability to communicate well with my old one. I will meet with my new doc and ask a lot of questions - she is easier to communicate with. This has all just been unfolding as I changed docs, which makes things more confusing.

I have had the dilation, but it went back to the same problem within a couple weeks. It wasn’t painful and for me personally it was just temporary but people gave had success. I had it done at the hospital and had a light anesthetic.  In and out the same morning. I too have had very bad narrowing, including The fact that my pouch is off to one side. (Rectocele)   I do the warm water enemas in the morning and again in the evening before bed. Done it for 20 years. Never any issue. I’m still able to Eliminate fine As long as I take psyllium husk fiber powder with water 10 minutes before a couple of my meals to provide enough bulk to help things pass through. I just find using the warm water enema helps eliminate acids or residual fecal matter that still might be still there and keep the pouch cleaner or help with possible pain throughout day. 

I love this site. It is so good to know other people who understand. 

FRH- I have worried about the enmas. It is good to know you have done it for 20 years. I hope I can keep the pouch long enough to be able to say that. I used to just do them occasionally, but it has gotten more often and I have done it at least once a day for a while.

While these issues are an ongoing thing, I am pretty sure I had a partial blockage when I began this post. I have had total blockages and know what those feel like, but this was different. No hard stomach, no nausea and I was able to use the enema to pass stool. I did have pain on the right side, but not too bad. I was exercising and hoisted my body up off the floor when something inside "flipped." After that, I was able to empty and the pain mostly cleared up. 

After 14 years, we can still learn new things about our pouches. They never fail to surprise. 

I have the same narrowing at the J Pouch inlet.  As mentioned elsewhere, it's common to have a stricture there due to inflammation from backsplash stool pooling in that area.  My GI doc has a very specific test for dilating: "if I can get the pouch scope through there, you will not be dilated.  If I can't, then you will be dilated."  He then told me he disfavors dilation unless he can't get the scope through, because it involves stretching and tearing of the muscles as well as potentially a lot of bleeding.

My personal theory is if you have had a J Pouch 15 years plus, it could eventually happen. Wear and tear and mileage from the continual pooling of backsplash stool.  It started with me at the 15 year mark, but I am now at the 28 year mark and haven't needed to be dilated.

Best thing to do is control the inflammation that is causing the stricture.  In my case Remicade is doing that. KTA, it seems like your medication regimen is appropriate for some patients but perhaps you need another biologic.

Last edited by CTBarrister

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