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I've had my J-pouch for over 15 years, and during the past two, have begun to have night accidents(never had a problem leaking at night before). Not a regular thing- the ends of the event spectrum are from twice in a night to maybe a few weeks without. Usually once or twice a week on average. Sometimes I'll wake and catch myself before much(or any) fluid escapes, other times I'll wake up realizing at some point I expelled as much as 1/4-1/2 cup.

Nothing I can link as a cause. No change in diet, habits, meds, etc. After the first few dozen times I thought maybe my sphincter muscles were getting lazy, and started doing some Kegle-style exercises, but did not get any results I could say that it was effective in any way.

The closest thing to a 'major' change is that I previously wasn't a regular antibiotic user (to fight pouchitis), but I have been the past 3 years or so (so not a direct time-line link: the accidents started well after regular antibiotic use), rotating between amox,cipro, and flagyl.

I've learned to live with having a J-pouch just fine, but this relatively new turn has me worried, thinking long-term, is this going to get worse ?

Does anyone have any insight as to why this might be happening now, as opposed to right from the start? I've tried various things, such as not eating 6 hours before bedtime, but can't find a 'cure'.

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It seems like your pouchitis may not be adequately controlled. If that's the case, it may have become resistant to one or more of the antibiotics you're using, or even all of them. Sometimes a new antibiotic will do the trick, sometimes you need more than one at a time.

Additional things to consider:
1) Is it happening with about the same frequency/severity regardless of which antibiotic in your rotation you are on?
2) Are you using a probiotic, like VSL #3?
3) Are you using anything at bedtime to slow things down (e.g. Imodiom or Lomotil)?
4) Are you avoiding NSAIDs?
5) Have you tried (or considered) one of the low-carbohydrate diets? This is what I'll do if/when antibiotics fail me.
Scott F
I had had my J Pouch since 2007. I started having leaks after the second year and have them every night. For some unknown reason, I went about 10 consecutive days this month with no accident. I have tried all the eating tricks,no eating after a certain time, antibiotics, probiotics, Kegals, you name it...to no avail. I just pad myself really well before going to sleep. I usually always wake up right away. Good luck, hope you find the right combination to work for you.
nys
Scott,
I can't find any relationship with either frequency or severity with any antibiotic (though amox seems to work best to reduce general urgency for me).
I admit I've never tried probiotics (besides the occasional yogurt)
I don't avoid NSAIDs per se. I rotate between acetaminophen and ibuprofen when I need something for aches/pains. I've never noticed a correlation, but will start watching.
I've never had problems with the foods I eat, other than the occasional meal of hot wings(some sauces go through me like a freight train), but even that doesn't mean a problem at night other than perhaps an extra trip or two if it's a late meal.
Early on with my pouch I tried Lomotil/Imodium, and they did nothing for me. I haven't used them for years, and would just as soon not (long term use concerns) unless they were a 'miracle' type cure.
I'll definitely try the probiotics route and see what that does. What do you do for frequency of use and amount taken?
I'm not sure I can eliminate ibuprofen, because I've got a little liver issue and don't want to rely solely on acetaminophen.
Thanks for those suggestions.
vweaver
The best-studied probiotic is VSL #3. It's expensive, but the DS (double strength) form is prescription-only, which means it might be covered by your insurance. The theory is that probiotics improve the bacterial balance in the gut, which seems to be more important than previously understood. I currently take two DS packets/day (at breakfast and dinner), but I took 4/day for a couple of years.

I sure understand your acetaminophen concern; that's something to work out carefully with your hepatologist. In any case, you might try to avoid the ibuprofen for a couple of weeks to see if it makes a difference.

Your long-term concerns about Imodium and Lomotil don't make much sense to me. I'm not aware of any known issues, so I'd suggest rethinking this (if it's just a made-up worry). If you give them a proper try (e.g. 2 Lomotil at bedtime) for a while and they don't do anything for you, then the heck with them, though.

Have you had a pouchoscopy recently? That can help shed light on what's going on. Good luck!
Scott F
I also remember trying acidophilus once- it seemed to have a negative effect on me- but that was also before I was using antibiotics and was struggling with pouchitis (unbeknownst to me).

With regard to Imodium and Lomotil, I've seen a few things on dependency and some adverse effects including Lomotil and existing liver problems. In general, I avoid as much prescription (or former Rx) drugs as much as possible. My body responds negatively to too many things (like tylenol pm- I take them for the occasional migraine, but I can barely function for 24-36 hours after).
I prefer the natural or homeopathic option if at all possible- even some non-drowsy OTC meds make me drowsy! For things like allergies, homeopathic meds actually work better with less side effects for me.
But I digress...
If the other things don't work, I'll try the Imodium route again to see if it make a difference this time.
vweaver
Both Imodium and Lomotil must be used with caution in cases of liver impairment. I'd suggest discussing with your doctor before going that route, if only to work out safe dosing. Often the issue isn't that the drug harms the liver, but rather that the blood levels get higher than normal, with the potential for overdose. This liver-related issue applies to many drugs, including OTCs. Even if the source is natural it may depend on liver metabolism, so tread carefully. Homeopathic remedies won't do you any harm; perhaps one day over a liver-friendly ginger ale we can discuss whether they'll do you any good.

As far as I know the dependency issue is essentially nonexistent for Lomotil. Furthermore, if I had to become dependent on a drug with minimal side effects in order to avoid accidents at night, I'd sign up immediately. Each much choose for him/herself.
Scott F
Well, I think it might be sugar. Saturday I had a handful of (high sugar)candies, and that night I had an accident. I had eaten nothing else that day that I hadn't eaten the past few days (without an issue). Sunday, no sugar, no accident.

Assuming this is what it is, it's curious as to why it has become an issue- as I stated earlier, I had no night leak issues for the first 10+ years without avoiding any foods.

I'll avoid high-sugar foods and candies for a couple of weeks and see what happens, and if no problems, I'll try the candy again (for the sake of science and confirmation).
vweaver
I think that we just tend to get complacent, thinking that once we are settled in, that is it. But, the reality is that as we age, every part of our body ages. With that aging, comes changes and challenges we may or may not have anticipated. So, we just have to be willing to adapt. Otherwise, you'll just go crazy thinking that something is terribly wrong! Still, when you have a sudden change, you need to rule out something acute...

Jan Smiler
Jan Dollar

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