Greetings all. I'm glad I found this group!

I'm wondering if anyone who has a j-pouch might have any advice on how to avoid soiling themselves while asleep. It used to happen to me very rarely, like maybe once every month or two. But it's been increasing over the past few months, and now it happens perhaps 75% of the time. And it's not just during a full night's sleep, it can happen during an hour long nap on the couch. I take immodium as needed, but it doesn't always help. I know, I should probably make an appointment to get it checked out by my surgeon, but I hate getting that done.

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Above is the important part of my post. Reading below is optional, if you want to know more about me.
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A little background on me: I was diagnosed with ulcerative colitis in October 2001, at the age of 19, sophomore year of college. I had some remissions and some flare-ups, and a few hospital stays. It wreaked havoc on my education in aviation, especially flight lessons.

I eventually got sick enough that I had to take a semester off, and decided to go through with the j-pouch surgery. It was an easy date to remember: 03/03/03. My surgeon was excellent and did it all in one shot, so I never had an external pouch. The hospital stay was 15 days with a few minor complications.

I was home for a week, doing quite well and going only 4 times a day, but then I had a blockage somewhere. It was the absolute worst pain I ever experienced, and my mother wisely took me to the hospital where I had it done, rather than a much closer hospital, but it meant an excruciating 90 minute car ride. Fortunately, they didn't have to open me back up. They drained my stomach with an NG tube, and that seemed to work. I stayed another 4 or 5 days, and haven't been back since.

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I eat yogurt at least once every 3 days, that seems to help a lot. Stay away from veggies, certain spicy things are bad while others are ok. Multi-vitamins and V8 help make up the lack of nutrition.

I'm not sure if anyone else experiences this, but it's very rare that I'm able to "pass gas" while standing up or sitting up, otherwise I'd soil myself if I tried. Being in a reclined position helps, laying on my back is better, and laying on my front is the best. It can be pretty difficult in many everyday situations to find someplace to lay down, even just briefly, but I'm resourceful.

My pre-illness weight was 160 lbs, post-surgery was 120. Afterwards, I got up to 145 fairly quickly, hovered there for about a year, then eased back up to 160. These days I'm 175 and trying to lose some.

Friends are generally understanding. My ex-girlfriend was wonderful and insisted it didn't bother her at all, and told me to stop getting out of bed to fart. When I visit my parents and sister, they tend to grumble about it.

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Anyway, great to meet you all! I'm happy to share any advice that I can give if anyone pre-op or post-op has questions. Please feel free to message me!

Hi, I have had the J Pouch for 18 years and I only have nighttime accidents very occasionally (once every couple of months) and when I do, they are usually slight and it is a sign that pouchitis is flaring and I need to rotate antibiotics. I then rotate and the problem stops.

When was the last time your pouch was scoped or examined? This trend you describe could be indicative of some mild or low grade pouchitis. It's possible if you discuss it with your doctor he/she may put you on a short course of antibiotics which will immediately improve the problem.

Very coincidentally and ironically, last night I had the worst episode of nighttime incontinence in my 18 years with a J Pouch and it was due to gorging myself prior to bedtime. I went out with some friends for a very late dinner, ate an order of coconut shrimp and had a large burger (this was around 9 p.m., we finished dinner at 9:30 p.m.) and then on my way home I had a wicked craving for ice cream so I stopped at a convenience store and bought Ben & Jerry's Boston Cream Pie ice cream of which I ate the whole pint. I then watched the very end of the Yankees-White Sox game and went to bed about 11:00 p.m. with a full stomach and woke up 3:15 a.m. very heavily soiled.

I am pretty sure this is an isolated episode because I have not had any nighttime incontinence lately (I am taking cipro and flagyl as part of a rotation of antibiotics I have been on for 15 years), but this one was really a doozy. I have not let out that much since my ulcerative colitis years 1972-1992.

This message has been edited. Last edited by: DJBHusky,

Thanks for the help! Sorry to hear about your Saturday night, particularly the part about watching the game. (Sorry, couldn't resist, native M@$$hole here.)

The last time I had my pouch examined was around 12/2006 or 01/2007. I know, I'm overdue and I should know better, I just really hate going. I've heard that everyone with a pouch has pouchitis, but it's just a question of how severe. Not sure if that's true or not. The antibiotics sounds like a great idea. I've never taken antibiotics specifically for that before, but I took them several years ago for an unrelated illness and they probably had the added benefit of staving off pouchitis. I'll certainly look into it. I'm thinking I might try and obtain them without getting examined, and if it doesn't fix it completely, I'll bite the bullet and go get probed.

Thanks again!

I have pouchitis/cuffitis and the last med regimen change helped only a little with nighttime incontinence (which was becoming a daily issue). What made the difference was adding a probiotic made by Renew Life at night. it's stronger than I was used to (50 billion cultures). I noticed a difference the first night.

I'd say that's a sign of pouchitis. Are you having other symptoms during the day? Same thing happens to me when I'm not on antibiotics. I can't even lay down on the couch to nap for 10 minutes without getting the urge. It's like as soon as your body relaxes so does everything else down there Hope you get that checked out soon.

Started antibiotics this past Saturday night. Fingers crossed.

Thanks!

Follow-up question to anyone/everyone: Could I ask what kind of antibiotic, and how long you were on it? I went on Levaquin for seven days. It seemed to help a bit, but a few weeks later I'm back to where I was. Strictly speaking, it wasn't a prescription from a doctor, but it was samples of Levaquin from a Doctor's office, on the advice of an experienced nurse.

When my recent troubles started, someone recommended the probiotic PB8, which I've been taking (and perhaps I should try the kind from Renew Life mentioned here by Ressurect_again). Common sense tells me that the antibiotics will kill the probiotics, and so I should take them at different times of day. But I wonder if the probiotics will actually hinder the antibiotics, and I should lay off them until my course of antibiotics is finished, and then take probiotics to re-populate my system.

Thanks again!

Levaquin is in the same family as Cipro, one of the more commonly prescribed antibiotics for pouchitis. Most typically, Flagyl is the first choice, followed by Cipro. Since you only had temporary relief, you either were on too low of a dose, too short of a course, or the wrong antibiotic. The fact that you had some improvement means you are on the right track. If it were me I would call the surgeon or get reestablished with your GI doc (this far out from surgery you really are not a surgical patient anymore, but some surgeons want to follow you indefinitely). Often they can diagnose based on symptoms alone and you may
not need to be scoped. However, since it has been so long since you have been examined, your doc may require you to come in before prescribing anything. This may just be for a
consultation, but some "face time" is probably necessary. I urge to to pick up the phone and get going on this. To be honest, you shouldn't have gotten antibiotics without a prescription, particularly when you had not been diagnosed. I know the nurse was just trying to help, but that just ended up delaying your proper diagnosis and treatment.

As far as probiotics go, they are mostly for maintenance, not for treating acute symptoms. But, the ones with some sort of track record with IBD and/or pouches are Culturelle, VSL#3, Flora-Q, PB-8, and Align (that is what I am taking for maintenance now).

Jan

This message has been edited. Last edited by: Jan Dollar,

If your insurance covers prescriptions I would suggest trying VSL#3 after you go through antibiotics again (my doc told me it's pointless taking antibiotics and probiotics at the same time). I took PB8 for maintenance but it didn't work. My GI did some research on it and it doesn't have as much good bacteria as the VSL#3. I'm on my last day of antibiotics and will start the VSL#3 tomorrow. Fingers crossed that it'll keep me off of the antibiotics.
Good luck!

Thanks Jan and Armywife!