Incontinence

Has anyone tried probiotic foods or supplements to treat this sort of thing?

Brad-

This sounds like pouchitis (most likely) to me. I was able to manage my first bout with VSL #3 for a while, but I'd recommend 10-14 days of Cipro to quickly get better again. Most people who try to avoid antibiotics seem to just prolong the unpleasantness. I'm not arguing against an improved diet, but it probably won't fix you up all by itself.

How do you know you have irritation of your rectal cuff? The rectal cuff is internal. Is it possible that you mean anal sphincter?

Thanks, I still have some Cipro from a previous prescription, so I'll give that a try and maybe do that in tandem with VSL-3. Now that you mention it, I think the irritation is closer to the sphincter than the cuff, maybe 2-3 cm inside, probably not beyond that.

Scott F posted:

Brad-

This sounds like pouchitis (most likely) to me. I was able to manage my first bout with VSL #3 for a while, but I'd recommend 10-14 days of Cipro to quickly get better again. Most people who try to avoid antibiotics seem to just prolong the unpleasantness. I'm not arguing against an improved diet, but it probably won't fix you up all by itself.

How do you know you have irritation of your rectal cuff? The rectal cuff is internal. Is it possible that you mean anal sphincter?

I recently started to have minor episodes of incontinence when stressed.  I have tied the symptom to eating citrus.  Once I stopped all citrus fruit that burning, leaking sensation is totally gone.

Brad, I have the exact same thing. My pouch will be 20 years old this coming May and I have been relatively healthy all of this time.  I feel well, but the past few months I have had minor nighttime incontinence. I have had cuffitis in the past (or some type of -itis). My surgeon only sees minor inflammation. The thing is, sometimes we have lots of symptoms even if the doctor can't see a reason for it. And I suppose the doctor could see lots of inflammation, that would hardly cause symptoms for some people. All this to say that whether or not my surgeon sees something, my pouch isn't behaving like it used to.  It's frustrating me because my pouch isn't young, so it's not like I'm starting on new foods, or a change in something I haven't done in the past 20 years. I've never been on any drugs besides Metamucil once in the morning to thicken me up. I've been trying proctofoam lately but it doesn't seem to help that much. I'm kinda discouraged. I hope this isn't the new normal. Maybe I need another scope, and another medication to help with this problem.  Other than that I'm feeling pretty good, so it's hard for me to imagine what the problem could be. 

Hope you find the solution to your problem. And let us know when you do!

c-jay

C-jay, have you tried a course of Cipro or Flagyl? It's usually pretty easy to make pouchitis go away (except when it isn't).

Thanks for replying. I started taking Cipro for it a few days ago, and that immediately improved things. I've also been eating/drinking probiotic foods like kombucha and kimchi. I don't know how much difference that makes, but it definitely doesn't hurt. I'm also eating better in general, I think food definitely matters. Things always seem best when I eat plenty of vegetables and go easy on refined carbs and sugar.

CJB posted:

Brad, I have the exact same thing. My pouch will be 20 years old this coming May and I have been relatively healthy all of this time.  I feel well, but the past few months I have had minor nighttime incontinence. I have had cuffitis in the past (or some type of -itis). My surgeon only sees minor inflammation. The thing is, sometimes we have lots of symptoms even if the doctor can't see a reason for it. And I suppose the doctor could see lots of inflammation, that would hardly cause symptoms for some people. All this to say that whether or not my surgeon sees something, my pouch isn't behaving like it used to.  It's frustrating me because my pouch isn't young, so it's not like I'm starting on new foods, or a change in something I haven't done in the past 20 years. I've never been on any drugs besides Metamucil once in the morning to thicken me up. I've been trying proctofoam lately but it doesn't seem to help that much. I'm kinda discouraged. I hope this isn't the new normal. Maybe I need another scope, and another medication to help with this problem.  Other than that I'm feeling pretty good, so it's hard for me to imagine what the problem could be. 

Hope you find the solution to your problem. And let us know when you do!

c-jay

 

Yes, I've considered taking a course of cipro. I have a 10 supply already on hand. Flagyl, ugh, could never stomach that. It's just such a shame when it seems that the problem is somewhere very near to the 'exit', but yet nothing my surgeon suggests (Salofalk, and then proctofoam) really solves the problem. When I mentioned cipro to her her once, she said I don't have pouchitis and shouldn't need antibiotics. Having said that, I also know that what a surgeon sees, and what might work for us can be two different things.  

The thing is, I feel so normal during the day.  Let's see what tomorrow brings.....

c-jay

Nighttime incontinence is, for me, the first sign of pouchitis.

What about if the 'first sign' is the only sign I am getting. I've had pouchitis before and it always progressed. I guess that is why I am hesitant about the cipro. 

That's your call, CJB. I find nighttime incontinence very disturbing, and well worth trying reasonable measures to get rid of. I consider Cipro to be a reasonable measure, but not everyone feels that way.

Update: After 3 days on Cipro, my problem remains. I'm still feeling normal all day, but get a squirt of incontinence at night. Even on the Cipro. A bit discouraging, because now I am really wondering what my problem could be. I'm going to continue for the rest of the 10 days, but i doubt i'll see a change. 

20 year old pouch is getting old? Maybe, I'm getting old! GASP! 

I guess a little look-see from my surgeon couldn't hurt, but i bet it won't help either.

Anyone else have this? 

Thanks,

CJ

CJ-

Plenty of people have posted about this, and it's not always pouchitis. I recommend you do search here for posts with words like "sleep" and "night." Some basic steps worth trying could include:

1) Try tinkering with when your last meal of the day is. Some (but only some) find that they have trouble if they eat later than x o'clock.

2) Try Lomotil or Imodium at bedtime. I always take one Lomotil at bedtime, and some folks take two. You can ratchet this up to Tincture of Opium, if necessary, but that's best reserved for when all else fails, IMO.

3) Try a *small* fatty meal at bedtime. An example would be a spoonful of peanut butter.

4) I don't know if you eat insoluble fiber at dinner time, but if you do, moving the salads to lunch time could be worth trying.

5) Once you rule out pouchitis, it's worth finding out if the cuffitis is active, in spite of the meds.

Good luck!

Nighttime I continence was my primary symptom of pouchitis. Occasionally I might also have some rectal pressure. No other symptoms. Once my pouchitis became chronic and not responsive to antibiotics, loose stools and even daytime incintinence increased. 

BLOOD!!! Why is there blood now??? I just got through painting my toilet bowl red.

Uncontrolled cuffitis? Bleeding usually, not always, is indicative of pouchitis.

Jan

I figure it's probably just a pouchitis symptom and will go eventually, along with the pouchitis. But I just got through taking antibiotics that I thought had done the trick, so this is kind of a bummer. There's been a lapse in my Medicaid coverage, so I can't see a doctor right now :/ And I'm busy getting ready for a big move to another state, so yeah, this just isn't doing me any good.

Jan Dollar posted:

Uncontrolled cuffitis? Bleeding usually, not always, is indicative of pouchitis.

Jan

Brad-

I think Jan meant to write that bleeding is usually indicative of cuffitis rather than pouchitis. It's not a perfect indicator, but unless a pouchitis ulcer has opened up a small blood vessel, "painting the toilet red" is most likely cuffitis. If you've had successful cuffitis treatment before perhaps your doctor would prescribe it again (without a visit while uninsured). Even if you've never had it before you still *might* be able to get a prescription with a phone consultation. FYI, Canasa suppositories are expensive compared with mesalamine enemas.

Scott, thanks, I'm gonna call my doc tomorrow and see what he can do for me.

Yes, I meant cuffitis, not pouchitis. My brain was wandering while I was typing. Doh!

Jan