Incontinence

I take Lomotil at bedtime. I use psyllium to ensure my stool isn’t liquid. I try not to eat in the late evening. I did many, many kegels to strengthen my sphincter. A fatty snack at bedtime, like a spoonful of peanut butter, may also help.

Time should also help, as your attention while sleeping may adjust.

Accidents, or leakage?

I ask because pre-pouch, anything coming out unexpectedly would be called an accident. Post-pouch, leakage is normal. What’s the difference? Liquid only, vs solids.

If you have leakage of liquid at night, that’s totally normal after j-pouch and really common, unfortunately. Some people sleep on bed liners—I bought the washable hospital kind—and some wear incontinence pads (just shift more posteriorly than intended), and some stuff a bit of toilet paper or gauze between the cheeks to catch any dribbles. Just depends on how much you’re dealing with.

If you’re having escape of solids, yeah, should be concerned at this point and talk to medical team. I had this happen after my revision pouch, and boy was it an unpleasant change from the mild leakage at night that I was accustomed to from first pouch.

At first I did all the kinds of stuff Scott recommends above, when this started. But it wasn’t changing. And it was scary. So, my surgeon ordered anal manometry, where they insert a small balloon into the sphincter and have you bear down and squeeze, so they can measure the pressure generated. That’s how I found out that my internal sphincter, which provides 85% of continence (and can’t be strengthened—it’s not controlled consciously), was damaged during the surgery.

For the lucky ones who just have some dysfunction of the external sphincter (manometry can distinguish this), you can do the pelvic floor training and have substantial improvement, but I’d say those are the ones who don’t have significant incontinence to begin with (again, 85% of our continence is not governed by muscle under our conscious control).

If you’re unlucky like me, the next step after that is finding someone to try a sacral nerve stimulator. This can stim the internal sphincter for you, to try to beef it up, but results will vary. Mine haven’t been stellar, and I had to turn my stimulator off for the past year or more now, because it was causing more problems than it was relieving. Still, others have had good luck with theirs. Mine seemed to reduce incontinent episodes at first, but then it was actually making defecation harder at times, and that was leaving me sore and miserable.

One of the secrets of GI happiness is the ability to completely empty the rectum when you defecate, or in our case, the pouch. Apparently those who empty completely have less bacterial overgrowth and other problems than those who can’t. That’s where Scott’s list of helpful tips comes in very handy; fiber management is the secret to success, both pre and post pouch. Post pouch, you don’t need the ‘scrub brush’ fiber (insoluble) so much, and may not tolerate it well anyway. But you still need the soluble kind. Psyllium husk, or brewer’s yeast, or foods like cauliflower, cantaloupe, rolled oats, or potatoes, can regulate stool consistency and get you to the sweet spot where you can a. hold onto it and b. still release it when you want. Things that slow down motility, like Lomotil and Imodium, and Tincture of Opium, buy your new plumbing time to reabsorb water from what you ate, helping thicken things and make them easier (mostly) to evacuate. Not drinking a lot of fluid when you eat, but doing it at other times, can also be helpful while your small bowel is adapting to its new job.

Too much fiber, whether from a bottle or from a food, will make your life hellish—you will go, and go, and go, and go until you’re sore and bleeding. Too little, and your stool will be runny and you’ll leak more and you’ll have butt-burn from all the leakage (enter Calmoseptine, the miracle ointment). But what too much vs too little means is going to be trial and error to figure out!

Who knew this was so tough, right? (:

Oh, and then there’s pouchitis, which wreaks havoc on all your best laid dietary plans. When you do something regularly, and then one day it doesn’t work, and you have miserable runs despite your meds and your carefully crafted routine, that’s very likely to be pouchitis. Luckily that’s treatable in most people; when it happens to me, I pop a probiotic, and that takes care of it. Some people need antibiotics for theirs (depends on cause). And sometimes it takes hard core biologics to clear it up, but that is less common.

I used to have a ‘magic food’ that would, when eaten, always fix my random bouts of watery runs. Shrimp fried rice from a little hole in the wall in NOLA was my ‘fixer’. I don’t know why, but every time I had trouble, if I ate that, it settled right down. Normally I’d consider that greasy stuff a gut-bomb disaster waiting to happen. But it was just the right mix of nutrients to tell my small bowel to slow down and stop acting up. When I left NOLA, I lost my magic food… not all fried rices are created equally, apparently!

Anyway, good luck, and I hope it’s just liquid, because then firming things up at night may help. I actually lost the ability to have a spoon of PB after I had my j-pouch; it made things worse. But everyone is different there, as you’ll see on these forums—that’s why I find them so helpful. You get lots of different recs because what worked for me, or someone else, might not for you, and yet, you still have lots of things you can try that worked for others.

I would say its normal, I had the same issue as well. I did take anti diarrhea pills but after a while they started to clog me up unfortunately. So I wore diapers at night for a long time. I would say it takes a full year to get use to everything, that has been my experience.