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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)

Newest · Oldest · Popular
Originally Posted by ChristineinDenver:

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.

 

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

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.

 Believe it or not I can hold it most of the time...  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 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.

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

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.

 Believe it or not I can hold it most of the time...  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.  

 Ronda ~ feel free to reach out in a private message too. I am having issues and have been considering going to Mayo or the Cleveland Clinic for a consult. Holding it in isn't the problem, the watery consistency is the issue. No person, J Pouch or Colon intact, can hold in watery diarrhea. My gastro has me on Cipro for Pouchitis right now, and in two weeks we are going to look into Octreatide (sp?) injections to slow down the volume of water being output by my small intestine. Definitely didn't think this is what I was signing up for, but have to focus on trying to figure it out. The Cipro seems to be helping the Pouchitis immensely and I've had a few nights where I've only gotten up once (and no panty changes). That feels like a spa day!

 

 

Originally Posted by rcrossco_1:
Codiene phosphate is a GODSEND, forget loperamide, its useless compared to the codiene. With the above, I can go to the toilet nearly as little as 2/3 times a day, its a life changer and helps with any night time issues too.
Codiene Phos. is for me a last resort as it effects the consistency of the stool to a point where I end up with constipation and sludge. Ick...I know. I have found that pseudoephedrine which is available in tablet form for blocked noses to be one way I reduce the need to go to the toilet for a period of time. As a side effect of drying up the sinuses, the production of mucus within the small intestine is reduced and there is less motility.

However, be warned that a possible rebound effect can happen and everything that slowed up is going to move at some time. So, what I do, is use the pseudoephdrine if I plan on being somewhere I can't readily go to the toilet, such as for a trip to the zoo where stopping frequently would be an absolute pain in the butt...'scuse the pun....
I very much agree codiene phos. is an effective medication for us with pouches but it can effect people differently and this is certainly an alternative which some people would find useful and effective.

 

 

Originally Posted by Beth-Jpouch1991:

I have the EXACT same problem.  It is horrible.  For me it varies on what I eat or how late I eat.  Salad for dinner is the worst!    Would love to know other people's triggers or if anything helps.  

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.

IT has helped me tremendously also.   I wish there was a better way to get the word out.  
Originally Posted by Ronda from Oregon:
Originally Posted by ChristineinDenver:

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.

 

 

Originally Posted by Joann:

It depends upon when I eat and drink. If I drink wine and don't eat right away then I have problems at night. My cycle time for food digestion through the small intestine is 5 hours. I try to eat early enough that I have more than 5 hours after I eat before I go to bed.

 

i have a j pouch so I realize that wine, broccoli, and any thing gaseous is not good to consume before bed. 

 

With wine, consider the sanitisers that wine makers use before bottling. Phosphates are one that can effect your bowel. Unfortunately, I find that the more expensive wines have less detrimental effect on my bowel.

I have no problem passing gas but I think it has a great deal to do with other factors. Read my other post regarding position in bed and slowing the emptying of the stomach.

 

 

 

 

 

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.

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 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 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 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..
 

 

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 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.
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?

 

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.

 

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