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Fecal Incontinence

7 years after take-down I still have nightly accidents.   Examined for pouchitis but that is not the problem.  Any advice, similar situations?   I have a friend who has similar problem with urination but he got a mechanical implant to help.  Docs tell me no similar device exists for fecal incontinence.

Yes, there is such a device
No, there is no device
Posted by TCM ·

Comments (48)

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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!

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.

 

Originally Posted by Hopeful1:
Originally Posted by Ronda from Oregon:
Originally Posted by ChristineinDenver:

 I just need to stop losing so much fluid.. My BM 's are 90% water I have to drink two gallons of water aday to keep up . I lose all my salt and vitamins. the mayo clinic said I have dump syndrome and malabsorbtion issues. I don't keep my food. and when I lose it I dump a lot of green fluid  with it. My kidneys are suffering.  

 I agree with the mal-absorbtion as the ilium is supposed to take over the job of the large bowel in removing fluids. It has done so for me, thank goodness, and I think a few people here who have not had long-term pouches yet will find, in time, that things will improve.

 

Reason I'm replying is that you don't mention electrolytes anywhere. I found that if I have a bout of diarrhea, I must take an electrolyte supplement to get things working normally again. One of the indicators of low electrolytes is cramps in the lower legs. If your body needs electrolytes to function normally, and if you are low, it will strip the electrolytes out of your muscles...hence the lower leg cramps.

Also, have you tried taking Lomitol and Imodium at the same time?

 

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. 

 

Originally Posted by Its Not About Me:
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. 
Wow, this had me sitting up and taking note. I then went off to research with my google-fu skills. Gods, I hope this has been discontinued. I found one very detailed reference into all the side effects this drug can have. Not knowing where you are in treatment (or not), it is worth reading as some of the side effects have long term consequences.... Link below..
 

 

Originally Posted by Goentropo:
Originally Posted by ChristineinDenver:
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 simulator has me very interested and I'll be doing research on it. I have one question though based on your having had babies. I have found that using my abdominal muscles to help evacuate the pouch and having birth/age related bladder problems, I now have a prolapse. Do you know if the stimulator has any beneficial effect on a prolapse or should surgery be considered first. (I have no idea if you have had this problem but, I still won't know unless i ask) I know I'll do my own research but you are uniquely in the position of advising through personal experience.

 

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!).

Originally Posted by Goentropo:
Originally Posted by Jennifer:
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.

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.

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 :-).

 

Originally Posted by ChristineinDenver:
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 simulator has me very interested and I'll be doing research on it. I have one question though based on your having had babies. I have found that using my abdominal muscles to help evacuate the pouch and having birth/age related bladder problems, I now have a prolapse. Do you know if the stimulator has any beneficial effect on a prolapse or should surgery be considered first. (I have no idea if you have had this problem but, I still won't know unless i ask) I know I'll do my own research but you are uniquely in the position of advising through personal experience.

 

Originally Posted by Jennifer:
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.

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.

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