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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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I have the same problem and have been searching for a solution.  i would love to know of one if there is one.  it seems so strange that I don't have the problem during the day but at night I have a problem and have had it for a couple of years now.  Dr. attributes it to pouchitis so I am on long term antibiotics which I am not pleased about and still have the incontinence.

I've been a poucher for almost 4 yrs now. I've had this issue for the entire time however it has slowly gotten better over the years. Right away it was almost a nightly occurrence, my Dr told me to use pads, which overtime I got sick of buying so I switched to folded up TP. Slowly the accidents decreased and now  it is a rare occurrence as long as I go empty out right before bed and I kinda use the TP still as a habit and a precaution. I also find that some accidents now a days are self inflicted for nights of heavy beer drinking.

Sorry to be the bearer of bad news, but this is mainly down to several factors...

1) how much rectal cuff they left (this changes your sensitivity levels and night time continence)

2) If you ever had any stretching of the anastamosis right at the rectum

3) If you go to bed on a full stomach

4) if you take anything like codiene phosphate to slow things down.


I had a problem with my scar area closing, making going to the toilet difficult. After a few sessions of stretching it out, then a FINAL mega session where they must have really gone to town, I ended up having a few incidents as I think I lost a little sensitivity, or something like that.

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.

 

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. 

 

 

 

 

I have had a j pouch for thirteen years and the nightly problem for at least 10 years.  Having a good bowel movement before going to bed and stopping your eating after 7-8 pm is helpful.  I'm taking  a 4 billion probiotic that I have purchased from CVS which also helps.

I've had my ouch for 18 years and never had a problem with this until the past two years or so. I use Imodium more often now (never ever used it before despite being advised to), and watch what I consume. Sugary foods or drinks are usually the culprits. 

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.

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...

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!
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...

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'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.

Originally Posted by KTworth:

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.

 

Last edited by NikkiT

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...

Last edited by Hopeful1
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