Hi there, 

I have had my J-pouch for 5 years and mostly up to 15 -25 BM a day on normal diet but if I stick to fillers w/o gluten and easy foods about 9..... I have heard really encouraging news about pelvic bio-feedback therapy and there is a Physical Therapist local to me that is supposed to work wonders with teaching people new techniques for rebuilding pelvic floor muscles that help with incontinence issues associated with rectal / J-pouch patients. I also get severe rectal pain and cramping quite randomly but most often after eating solids... Hoping she can help with that too!  Good luck! 

I have had my J-Pouch for 25 years. I NEVER had one accident UNTIL...5 years ago I tried remicade to close my fistulas. The accidents started when I started taking Remicade, it was an obvious correlation when nothing else in my life changed except taking this drug...and double doses of it. I have never been the same, at least 2-4 accidents/week, some weeks better, some weeks worse. Can't figure out what triggers it. I have been on the same eating schedule for 25 years, eat no later than 6 pm and I never had a problem. I too can eat anything and don't have any problems; salads, fruit, ice cream, never had food issues. It was never about the food I ate, it was the severity of the disease itself (diagnosed with UC, J-Pouch, Oops - you have Crohn's too).

This is the only reason I'm glad my husband works nights!

it will come and go, it depends on how you lay, how "asleep" you get, what types of food you eat, how much water you drink... after 20 years hey I leak, I sleep with a shet sheet, beats getting up in the middle of the night and having to change the whole bed.  I eat very healthy, drink lotsa water, coffee n wine. I'm a "light" sleeper now and then I will get up and get to the restroom, now if I'm very tired and I really get to that deep sleep, well then I'm likely to leak n be changing my sheet...

Sleeping too deeply can also be a cause.  If I take something to help (Benadryl, Gravol or cough syrup or sleeping pill) it can cause you to miss the signals.

I had my surgery 12 years ago and only after a small op to help with a Fischer problem did I start with incontinence as my sphincter muscle was damaged. I now have sporadic accidents especially when sleeping but also while going about my normal daily activities.   

Another frequent comment I have seen in this thread is the use of toilet paper or incontinence pads are too expensive. There is a very, very good alternative which doesn't cost the earth and most men would not think of this immediately. It's the use of women's  sanitary pads. I can see the ick factor for men but, no-one is going to know except your spouse. I have found these a far far cheaper option, come in reasonable size packs of 8-10 and, if you get the right ones, you can wear them 24/7 without anyone knowing.

 

But there are specific types you need to get which are listed below AND when you wear them, you put them on back-to-front. ie the wider part goes to the back.

 

Look for key words on the packaging...

• Night time - these are generally 30-35cm (12"-14") though, you can also get a longer 42cm (16.5") type. I use the longer ones only if I have night time problems.
• Slim - cost maybe a little more but there is much, much less bulk so the profile is barely noticeable, if at all.
• Cotton - There are always 2 types of surface finish. One is 'dry' or silky and the other is cotton or 'comfort'. I live in the tropics and the cotton are far far far better for constant skin contact and they are just as effective as the others. I find the cotton also handles accidents far better....I won't explain, just trust me on this one.
• Wings - Not absolutely necessary but they do give more of a feeling of safety.

These are much better than using toilet paper as they keep the skin dry and there is much less chance of excoriation. If you need to wear a barrier cream, it won't soak through. There is also the self-esteem aspect of odor control. You don't have to find a toilet immediately nor do you have to change them every time for small incidents.

 

 

I was fine for four years and then gradually became more and more incontinent.  By the time I returned to the surgeon sometimes I would go through 4 to 6 pairs of undies (padded with toilet paper or course) a night.

 

We discovered that I needed to be dilated again and I am now on a self dilating routine where I try and keep it to 15mm.  Not my favorite sport for sure but even though occasional but burn has returned incontinence is once again a thing of the past. 

some nights are good and some are not. I might leak 1-3 times in a mounth depending on what i eat and how tired i am.also alchool  makes me leak. I alway wear a pad a night  .

Have had the same problem a couple of times doc put me on a med called Cholestryramine I drink this at night befor i go to sleep I still get up 3 times a night for bm but dont have accidents when asleep.

Having dinner early is my strategy also. Sometimes, when the incontinence gets worse or acidity increases at an inconvenient time, I fold a single sheet of toilet paper fourfold, apply barrier cream and stick it in. That is a fairly effective plug for awhile. Although it works well for me, I would not do this very often.

As you can see, I've been trolling this post most of the day, on and off. One thing that I think may be useful to know is the basic difference between Metronidazole  (Flagyl = anaerobic) and fluoroquinolones (Ciprofloxacin = aerobic). One, is better at handling anaerobic bacteria and the other is better at aerobic bacteria. However, as improvements come out in the fluoroquinolones, they are becoming more useful for anaerobic bacteria though there are some concerns about resistance build up to the antibacterial medication.

 

So, if Flagyl is not working for me with a case of pouchitus, I swap to Cipro. Generally this strategy works for me in 98% of cases.

 

I have found that it helps to eat your last meal while it is still daylight. Also do nor eat anything that you know will give you the runs. Generally when I stick to these rules I do not have any accidents while asleep.

 

I have the interstim sacral nerve implant. LIFE CHANGER! please talk to your dr about it. If he hasn't done the surgery before find one that has the experience. I'm in Tn and my dr is AWESOME. I had several surgeries at Cleveland Clinic but Dr Fazio passed away and so I have found a dr here in Nashville that rocks! I highly recommend the implant for incontience.

I had total colectomy in 98 with J-pouch, and was good until 3 years ago.  Waking up with a mess sucks when you're married.  I now sleep with adult diapers to hedge my bet and catch any trouble that may come up.  I am only 46, and having to wear something for this problem is embarrassing.  It saves me at least twice a month.  I am not ready to put any stimulator there, but I guess if it starts to affect my 21yr marriage, then I'll do it.

I hope this forum has the answers. 

 

I have learned everything happens for a reason and sometime that reason is to benefit other people. Hold your head high and keep
Moving forward!!!

 

 

DEFINITELY do not eat for several hours before bed. You'll know what the right time frame is for you

Thank you for mentioning this! I've never heard of it before and I just googled the term and found a great deal of information which I am now going to research. Because of several factors, I suffer more bladder incontinence than bowel incontinence as it looks like it has benefits for both.