butt leakage still...frustrating

How's your consistency at the moment? I don't have trouble with incontinence, but I'm just wondering if loose stools can maybe increase the chances of a leakage. If things are loose, get more starch foods in you to thicken it up more.

One last thing, if things are comfortable with your lass, I'm sure she will understand certain side effects to having a pouch... Maybe give her a little heads up in advance on the trouble you're having with a little leakage.

Poucho...can you try lomotil. Why no fiber? Can you clean out pouch before sex with warm water enema?  Not very romantic but could possibly help. Sorry you are experiencing this. I too suffer from this at night at times. 

sometimes thicker than others but I seem to have the issue either way. I was told by Dr Shen that surgeons tell us we need fiber, but he said with pouch it is total opposite, we should have less. don't know why?

I'm guessing as it's because it is much easier to pass non fibrous stools w a joouch and fiber always increasss my output.  I hope you get some answers. 

When I first got a stoma, I was told to stick to a low-fibre diet in the first few weeks because fibre will increase stool sizes and increase the chances of a blockage.... maybe it's the same for a j-pouch?

Over time, more fibre foods can be introduced. Maybe your surgeon is just being cautious over certain foods which is understandable.

dr Shen is my GI

Without my "tricks" I have frequent (daily) leakage/incontinence secondary to sphincter damage after surgery on a fistula. My "tricks" include thickening my stool as much as possible with Imodium, codeine, and a lot of psillium fiber, and I always have a small cotton ball (either a normal small ball or a third to a half of a "jumbo" cotton ball) tucked up and inside my anus. I used to use a small pad outside the hole/between the cheeks, but the leakage would really irritate my external skin, so I decided to start tucking a cotton ball up there to collect/prevent any leakage before it exited and irritated the skin. I've been doing the cotton ball method for about 18 years. It works perfectly during the day, at night, and during sex! After every BM (it generally comes out when I have a BM-if not, I dig it out with a fingertip), I replace with a fresh one.

That cotton ball strategy made me interested. I also have problems with nightly incontinence and would love to have it solved somehow. Seeing you have great success with that is nice!

What exactly do you use? And how do you use it, really just 'push it in there'? I can't imagine it correctly right now but when you have success with it for about 18 years I'm interested.

Does it have any negative side effects?

that cotton ball method scares me a bit. I don't know about sticking something completely in  and up the butt hole. what if it doesn't come out and eventually causes a blockage? or all the fibers don't come out and they embed into the pouch and cause issues? maybe jan could help on this one??

anyone have thoughts on this cotton ball method?

I haven't tried cotton balls or anything similar. If I'm worried about leakage or urgency, I just excuse myself. I know that's hard in a newer relationship.

I got married about a year and a half ago. We started dating a few years after my surgeries. My wife has been incredibly understanding. It's also been a process. There's no avoiding that, in an intimate and long term relationship, some kind of embarrassing thing will eventually happen.

It's happened with me so many times and so often. The first time I had some kind of accident that my wife (fiance, girlfriend at the time) noticed, I was just crushed with embarrassment, shame, guilt that she had to deal with someone so messed up physically and mentally.

I feel that's my reality. I also didn't give her enough credit. Her capacity to care for me has brought me to tears. To get to that point involved a steep learning curve. I'm sure it's been more difficult than she's said.

With that, I feel more motivated and empowered - not nervously pressured - to take better care of myself. She helps me make better decisions. Like, with chronic pouchitis, my urgency is uncontrollable several times a week. It was her idea that I start using "paper pants" (Japanese for adult diapers). I was adamant that was a line I wouldn't cross. But, now, I always wear them and have spares just in case. It's a lot better than messing my trousers or jeans, in any situation at any time.

Without her support and encouragement, I'd be in a very bad place. I had to trust her with that first, give her the chance.

Shit happens. Guaranteed, it will happen. If you've talked with your girlfriend about your conditions, pointed her to information, told her you're open for any questions, that's the best you can emotionally do.

Some kind of medicine or physical block will fail at some time. Of course you should do whatever you feel is reasonable. Of course it's not ideal to slam someone with your problems, but you deserve the room/security to not worry all the time.

I hope all that doesn't sound patronizing. Just being here, you're probably more knowledgeable and aware than I was.

To be clear, I am not a physician and am not recommending any medical advice. I am just sharing what I have figured out works incredibly well for me and makes the difference between a terrible quality of life (daily leakage) and chronic pain, to a way better quality of life with rare leakage and rare pain.  My doctor's all know I am doing it and they have never advised of any risk/expressed concern and and I have never experienced any problems. I do NOT have a stricture or anything and if anything have loose sphincters/abnormally untight /lopsided anus/hole (hence why I leak). Your mileage may vary.

I use just a portion of a cotton ball-maybe a third of a "jumbo"? After a BM I clean with my bidet (or TP/wipe if away from home), bend at the waist, use my left hand to splay my left butt cheek open a bit, and as a female I go in/under from the front, with my right hand use my thumb and forefinger to place thecotton ball at the entrance to the anus. Then I use my pointer finger to tuck it just up inside-The whole piece is "tucked in" there, but just barely. I am not shoving it way up there or anything. It's just right there, inside, prior to the exit of the canal, not in the "pouch" itself. 90+% of th time I just poop it out with the next BM-if for some reason the poop has come out around it and the old cotton ball is still there, I just use a fingertip (and thumb?) to pull it out, put in toilet, and put a fresh one in.

I always wash my hands when I am done

I think the cotton ball thing is a great idea.  Poucho, I just wanted to let you know that almost a year-and-a-half out from my redo, I am now pretty much leak free.  I still use a light pad just to be extra safe, but getting better and better.  No problems with discharge during sex.  For me, I am pretty confident that my diet can encourage leaking.  Example, a nice big bowl of ice-cream with all the fixin's -- love but shouldn't do it! -- means be prepared!

As far as the cleaning out with a bidet, I have story.  Last year I started playing in a men's basketball league, so I cleaned everything out before going (turbo on the Coco bidet.)    Problem!  Some of the extra water in there hung around until I started playing.  Yes, I made it to the bathroom, but it wasn't good.  Be careful when trying to clean out proactively, there can still be some in there for a while.

 CORRECTION:  I use very thin liners, not "light pads."

When I had my pouch I used the cotton ball method, my Dr's knew what I was doing one even suggested it.  I think it might work well for you with minor leakage.  Oddly you dont really notice it is there which is nice. I kept it part inside, and part out so I didnt worry about it going into the pouch, which I suppose could happen. There actually is something called an anal tampon for severe incontinence (not available in the US as far as I could determine) it doesnt sound like your problem reaches that level. Not sure it work well with a J pouch due to frequency of BMs.  Same issue with cotton ball, it was change at every BM but cotton balls easy and cheap. The cotton ball helped me, but my leakage was pretty bad, really restricted my life and so I had the pouch removed.  Also tincture of opium helped, fiber was worthless, lomotil helped a bit.

@JJA posted:

Without my "tricks" I have frequent (daily) leakage/incontinence secondary to sphincter damage after surgery on a fistula. My "tricks" include thickening my stool as much as possible with Imodium, codeine, and a lot of psillium fiber, and I always have a small cotton ball (either a normal small ball or a third to a half of a "jumbo" cotton ball) tucked up and inside my anus. I used to use a small pad outside the hole/between the cheeks, but the leakage would really irritate my external skin, so I decided to start tucking a cotton ball up there to collect/prevent any leakage before it exited and irritated the skin. I've been doing the cotton ball method for about 18 years. It works perfectly during the day, at night, and during sex! After every BM (it generally comes out when I have a BM-if not, I dig it out with a fingertip), I replace with a fresh one.

I am pretty sure you cant flush those..are you digging it out after it goes into the toilet? I am still afraid im going to stick it up there and its going to get stuck... or the fibers from the cotton ball with stay inside and cause issues

Well, I’ve been flushing tampons my whole life, which are made of cotton, so I always figured a half or a third of a cotton ball was no big deal to flush (although after googling now I see that technically tampon makers no longer recommend flushing them). I haven’t incurred a plumbing problem yet (knock wood) although I’m on city sewer.

In normal circumstances, about 50/50 the cotton ball pushes out when I eliminate. If it hasn’t/doesn’t, I simply use my nails to snag a portion of it and pull it out manually. And as a courtesy, if I’m visiting someone I know is on septic system, I will manually remove before eliminating. At home I use a bidet with a turbo/enema-like strong stream, which dislodges the cotton into the toilet about 99% of the time.

It might not be for everyone, but figuring it out for myself as a coping strategy changed my life.  I couldn’t function without it and would probably be on disability or forced to revert to an ostomy, but with my trusty partial cotton ball  I can live an active, fulfilling life.