Hi all -I have had my pouch for 16 years. I had colo-rectal cancer and had a low anterior re-section.   I had similar issues, mostly having a lot of gas, several BMs a day and worst of all being "leaky". Wearing pads and constant clean-up, not to mention a general feeling of discomfort *most* of the time became my normal routine and I just had resigned myself to it being a normal result of the surgery.   I had survived cancer, so it beats the alternative.

 

Several months ago on a whim I decided to go gluten-free since friends had reported success with their own tummy issues.   OMG - within a week it all cleared up. No more leaking, no more gas.  Seriously. I am not kidding. 

 

My normal diet included a good amount of pasta, bread, pizza, etc. I had NO CLUE that the food was causing it since I never went enough days without something without wheat to notice a change.

 

SO... what I'm saying is it might not work for everyone, we all have our own issues, but it's worth a try and it worked for me.  If I do splurge and eat something gluten-y, I get the gas and leakage back.

 

Take care everyone - I wish you all the best.

 

 

 

 

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. 

I can totally relate to many folks comments.   I've had my pouch since 1991 and I'm now approaching my 39th birthday.   While the pouch has largely given me a wonderful life, I have dealt with pouchitis (cipro or flagyl to control) and periodic nightly incontinence.   incontinence is definitely worse when pouchitis is flaring but really can happen whenever.   I have a wonderfully understanding wife but it is embarrassing regardless of circumstances.    In the last 10 years I've struggled increasingly with both problems and there have been years where I was rotating the antibiotics nearly all year.   I've tried various probiotics, VSL#3 and the like with no success.    About two years ago I started popping my kids' gummy probiotics as I walk by them in the kitchen and lo and behold - this has made a stunning turnaround in both departments for me.   My theory is the gummy preparation holds up better in the gut and the lower "kid" dose is also a factor.   I generally have gotten by with 4 gummies eaten throughout the day.   That's my maintenance dose at this point.   I believe the manufacturer is Sustenex.   I get them at Target and more recently Costco.  It's remarkable what a change they have made for me in the pouchitis department and incontinence.   I wish everyone the best out there!

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!!!

 

I didn't have a prolapse, and all my babies were vaginal births. Not sure which should come first, the the nerve stimulator was a walk in the park in terms of surgery. You go in to a day surgery center, and you are given anesthesia, they put the leads in and attach it to an external device. The whole thing maybe takes an hour if that. You use the temporary external device for two weeks to see if it works for you before they implant the small one under your skin. At first it feels a little odd, something like a rubber band snapping gently is the best way I can describe it. You can adjust it ~ and it should not be painful. I noticed improvement right away, went back to work two days later. I couldn't wait to get the permanent one in place. The batteries last about 7 years, so down the road I will have to replace it. I would say this will help you right away with both incontinences, and no down time to speak of, so why wait? It will likely help you feel better while you are recovering from the prolapse surgery (less getting out of bed to go to the bathroom!).

It does have benefits for urinary incontinence too! Now I don't pee a little when I sneeze ~ you have to find the silver linings in life :-).

 

 

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.

 

 

Salad is one of those interesting things that can cause all sorts of problems. One thing that many people forget is that salad needs washing and often this is done under the kitchen tap. Depending on where you are in the world, you could be introducing bacteria to your meal from the tap water. Consider old pipes, old infrastructure, does the local pumping station need to be dosed with a sanitiser (ie chlorine), are you in the tropics where giardia is often present in the water supply. (Also note that the treatment for giardia is the same treatment for pouchitus ie metronidazole)

 

The other thing to consider about salad, is the dressing. I have a reaction to Palm Oil and, because it is cheap, many companies are substituting this in the manufacture of many food products such as instant coffee mixes, salad dressing, sauces etc.

Is a specific in the salad causing a problem? You may have a mild allergic reaction to one item that, without a large bowel, causes the flow to hasten through. (shellfish, such as shrimp, takes the rapid route of 3 minutes from hitting my stomach to exiting...seriously!)

Final thought is use of a binding material. If I have a meal such as a salad, I will also try to include a side dish of pasta or rice or even a heavy dough bread, to help bind the other parts of the meal into a more solid mass which then slows the motility down.

 

 

I probably clicked on the wrong answer as there isn't a 'device' but there is a 'method' of greatly reducing the problem. I have had my J Pouch now for 30 years and, over time, my sleep position in bed has just about been locked in concrete...seriously, I no longer turn over during sleep and I only turn over if I wake up first and make the decision to turn over.

 

Firstly, someone a long time ago told me that your stomach empties faster if you are lying on your right side. I found in my case, this was true and I'd wake up either needing to go to the toilet or due to incontinence. Over time, somehow the brain/body learned not to turn onto the right side. If I woke up on my right side, feeling like I had to go to the toilet, I'd return to bed and lie on my back. This reduced my night time incontinence and/or waking up to go to the toilet considerably. If I try to lie in that position now, it's actually painful after a short period of time,  as the body has not rested in that position for so long, that my joints are no longer flexible enough to lie comfortably.(I'm 56 and starting to feel age related joint pain allover so this is a fair assessment.)

 

Over time, I also learned that lying on my back also reduced the need for me to get up at night as I didn't 'feel' like I needed to 'go', so I didn't wake up as much. Lying on your back also puts pressure on the anal region and reduced, for me, any feeling of fullness needing attention at some point. I was very very very rarely incontinent in this position unless I had a problem with giardia or pouchitus which then required medication. ...oh, and shellfish....I also found that without the large bowel, any minor reactions to some foods that were never apparent before definitely now had to be excluded from my diet.

Anyway, it was a slow process of 'training' myself and I didn't even realise I was doing it until recently. I do NOT move in my sleep at all anymore and I sleep on my back 98% of the time. Some people think this is impossible and that, of course, I move my position. Trust me, I don't and for me this allows me to seldom wake up at night any more. It's worth a try as it doesn't cost anything and it will take some time to 'train' your body, it certainly won't happen over night.

 

 

Ok... So I am still learning after all these years. I have tried everything to slow down the loose BM. Lost colon in 1988 slow down great by 1997. In 2000 I went to 25 BM a day. I am down to around 12-17 a day and now with stage 4 kidney damage because of long term fluid loss. I started taking Gattex shots in my belly in July 2015, no help yet. Its a new treatment.

I don't want to go on dialysis. I have tried...Imodium, lomotol,colostrum powder, flagel. another shot in the belly ( I cant remember name), probiotics, Cipro, loratab, codeine,and some things I can't remember. Any ideas?

By the way... VERY IMPORTANT... use AQUAPHORE with HEALING ointment  in it to help the skin irritation with the loose BM. put it on each time and wipe. It does not sting and it helps heal.  Buy it at at grocery store in the hand lotion area. Thx...

I have had my J-pouch this March 18 years

what I have learnt, is that i will always have 10-20 dm's a day depending on my diet, or a hard night of drinking haha.

I also learnt, never trust a fart unless you are indeed on a toilet, that fart could be loaded. haha... Also I know, i have to get up every night, to empty my pouch 1-3 times.

I have had lots of trials and errors with my pouch.

Although I have not had this particular issue, i may know of an affordable solution.

 

There is company called Coloplast.

They are Ostomy and incontinence specialist.

If you call their 800 number, they will send you a sample for free.

They have a medical anal plug (think tamponish, with string, only different).

I believe anyone can wear these, and they much more readily available, and more affordable, then the Medtronic solution provided lower down. 

I have no skin in the game, but i know they work well.

 

I thought I did.

I've had the problem since I had the operation.  One doctor said "pouchitis" or Crohns and had me on cipro.  I don't know that it made any difference.  The compounding problem is painful anal irritation but Calmoseptine helps.

 

Daytimes are usually OK but late afternoon through midnight are problematic.  Alcohol anytime is a no-no as are too many raw fruits and veggies, especially late in the day.

 

I take Immodium before eating and Lomotil at bedtime.

 

BUT I'm now taking Lialda, which is like Asacol, and it works!

 

My solution for accidents is Viva paper towels with thin pads underneath.  The towels are the softest I can find so they don't scratch, and I carry a bunch in my purse.  Easy to toss when messy.

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! 

Wow, Jennifer I use Dr. Jacobson too. He has done me, my Dad and brother. Mine was done in 1990 and I still have my bad nights and I take 8 Lomotil a day.

I've had a pouch for over ten years and have periodic bouts with incontenence.  As others have already stated there are several things that help and others that hinder.  Knowing what will cause you to have gas and how early or late you eat will all factor in.  I try to not eat after eight pm and always potty before bedtime.  These have really helped me.  It may help to keep a journal of the foods you eat and their effects on your system.  That was how I identified what I need to stay away from at night. I recently started taking a probiotic to see if it will help, but not sure it helps me.  I have a 5 to 7 hour cycle when I eat and the probiotics have not changed this cycle.  Best advise is to get to know your body-again.  Things have changed, so learning is fundamental...

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...

There is a device for assisting you with this. It is a Medtronic Sacral Nerve Stimulator. It is a small device with probes that is inserted under your skin right at the top of your buttock. It sends impulses to the sphincter to keep it toned and tight. 

 

Following my takedown after my J Pouch I was fecally incontinent. Was a total mess. I felt the need to hold it but either from birthing four large babies or the surgery, or both, my sacral nerves were severely damaged. This unit was an easy procedure and made a huge difference. As long as I don't have diarrhea, I can hold it and I wake up to go (not wake up in my own mess, which has happened). 

 

It's given me my life back. The same surgeon that did the J Pouch inserted it. I can turn it higher or lower, or even off. My gastro was the one who figured it out though.

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 a sacral nerve Stumulator placed 2 years ago and it took some time programming it but it does work. It is amazing. Feel free to text me if you have questions (417)621-5309 I went to Dr. Jacobson in Dallas Texas. He is affiliated with Baylor.