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I had a failed J-pouch due to faulty construction and early plus late complications, and am six months out from the third stage of my revision, with an S-pouch and a mucosectomy (I had chronic cuffitis before). I was told I’d be really happy at the end, with 6-10 bms/day, but instead I have 25+ bms/day, with ridiculous urgency, serious leakage day and night, and no benefit from imodium/lomotil. It is frankly disabling, and I’ve toughed it out for years with an imperfect j pouch without giving up my career, so for me to say that means I’ve reached my limit.

Turns out I have a damaged internal sphincter from the mucosectomy/anastomosis (20 pct chance with this surgery, so bad luck more than anything), which is the reason for the inability to control liquid stool/chronic leaking. 

And, on top of that, the 25+ bms/day, with 10 or so of them at night, is brutal. I am ok if all I have to do is stay at home and head to my bathroom as soon as I need to, but work was impossible. I now take tincture of opium around the clock, but it doesn’t help for more than an hour to two hours here or there, when it helps at all. I don’t have pouchitis—no cramping pain when I have to go, no blood, pristine pouch by scope, and the stools are of varying quality with what I eat. No evidence of a mechanical issue—my surgeon reports a perfectly constructed pouch in terms of the length of the outlet, etc.—so this fits the mysterious ‘irritable pouch syndrome’.

I only had a decent week when I was postop from ileostomy closure and was on hydrocodone for that week. I thought I was going to do really well, because I was down to 8-10 bms, though I had to go suddenly when I had to go. Once I stopped the hydrocodone, though, all heck broke loose and I went up to 25x or more. I didn’t put that together at first—I panicked and called my surgeon, and got a scope for my trouble—but afterward I realized that’s why I was ‘fine’ when I left the hospital. 

My surgeon turned me over to the GI, because he is only willing to do ileostomy now, and I won’t go back there, as I don’t have enough bowel. I had horrible malabsorption for several months with the temporary, and a permanent one could only get me back a few more inches, so too much risk of chronic malnutrition and misery. With this pouch, I have been able to recover to a normal albumin level because I am absorbing nutrients again. And I have ridiculous contact dermatitis and allergy issues, and was starting to become sensitized to the only wafer that didn’t cause a severe reaction from the start. 

GI is nice and has tried lots of things to help, but she isn’t willing to try narcotics for the long term, even though technically I am already on an addicting, sedating narcotic with the tincture of opium. I have not developed a dependence despite 8 surgeries and seven years of tincture prescriptions, and like 95.5% of the population, I am apparently not at risk there. (Yes, it’s true—only 4.5% of exposed people become addicted to narcotics. It’s devastating when it happens, and that’s still a lot of people, but it doesn’t mean that the vast majority will, and it isn’t fair to deprive people of these useful medications based on fear when you look at the numbers. My risk of any complication from surgery was much higher, but I was still offered surgery...)

Anyway, the only things that work are not being provided, and I’m about to try a nerve stimulator for the internal sphincter, but I am wondering if anyone else has tried one for this, and what to expect. I have read and heard about ‘shocking’ sensations in the groin, and problems with airport security machines, and all kinds of stuff, but I don’t have any of this from someone with actual experience with this. 

Does anyone have experience with irritable pouch? Has anything helped you?

I’ve had to give up my career, which I managed to keep despite years with a faulty j-pouch, because I’m finally at the limit of what I can balance. But I’m single and have to support myself, and I want quality of life back, too. I don’t expect magic from the stimulator; it may help with the liquid leakage more than anything, but there is no reason why it would change the irritable pouch part, so my expectations are tempered. Elimination diets and other modifications have not made any difference. Meds seem to help a little sometimes and not at all other times. There are runs where I am back and forth to the bathroom every few minutes, and none of this is predictable even after six months of analysis and rigorous testing. It has gotten so that I don’t want to leave my home, which is a lousy way to spend the rest of my life...

Thanks in advance!

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I’m so sorry you’re going through this, Athena. One possible encouragement: “irritable pouch” is really a wastebasket diagnosis, and it doesn’t necessarily mean you have two things going on. If you can get your sphincter working well enough with a stimulator you may do very well overall. I sure hope it works for you.

Scott: not a garbage dx; just something that has been observed that we don’t understand enough yet. Definitely a common problem in medicine... 

Jan: problem isn’t diarrhea, so we haven’t tried the sandostatin. It’s a hypersensory issue where the pouch doesn’t exhibit normal compliance (demonstrated on manometry); I feel like I have to go 25x or more a day, but the stools are formed. Gas and stool create exactly the same sensation of needing to go right away. Imodium and lomotil help consistency but not frequency now. When I had my j-pouch, they helped both. Not pouchitis—goodness knows I had that enough over the years with the old pouch—this feels and acts totally different.

Solomin: I have really been thinking about doing just that!! The surgeon who did my complex reconstruction is a very well known and extremely respected surgeon. He’s just not good at having a conversation. He doesn’t listen to my symptoms or answer my questions, and ever since the complication was discovered (sphincter injury), he has not seen me in person. He hides from me. I am really pissed at him for that—not for the injury, which was a 20% risk anyway. I went back to the surgeon back home who is a human being; she does stimulators and is taking care of mine this week. She agrees that my IAS is completely nonfunctional, and is willing to try me out with the stimulator. She has only seen 50% improvement in continence, though. And she seems to understand that continence is only half the issue. At least she listens and understands my fears about ostomy (not having enough gut length like all of last year, and having wicked contact dermatitis problems); she actually tried me on her preferred sensitive skin pouching system last fall, and her nurse had to take it off after 2 minutes because I developed horrible blisters. Then she understood what I was saying... Now she listens. He just talks at me and dismisses my questions and concerns, or doesn’t talk with me at all.

As a surgeon myself, I am really affronted by his behavior. But I don’t want to let him off the hook for my care by just finding someone else, either... I believe firmly that we should treat the complications we create.

I do need to find another GI, though. This one has reached the end of her knowledge and experience, and she is nice enough but she is too scared to try the things that are known to help. I think it’s time to seek out someone grey-haired and unafraid of medications, but I can’t travel right now except by car or train. If I fly, it’s a nightmare. Maybe after stimulator, if I at least have bowel control, I can risk traveling further from home to find the right one.

Thanks, all, for your thoughts!

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