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!