Bowel or fecal incontinence and how to manage it

Posted by Sarah @emyliander, Jun 11, 2019

I am 73 yr old femal with diagnosed Celiac, Microscopic Colitis and IBS. i don’t have diarrhea, BM’s are either soft formed or constipated small hard stool, but either way I can be incontenant of small amount of stool. I wear a pad in close knit underwear with legs, so nothing can escape. Any advice from people with same problem would be comforting and useful. I would like to know how you handled it on social occasions.
Thank you, Emyliander

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Profile picture for cathyas @cathyas

My GI doctor gave me information about Interstim or Axonics Therapy to read. Looks like a wire of a stimulator is inserted near the sacral nerve. I'm unsure of doing this. Any thoughts?

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Did not work for me at all. Painful and expensive, and that is just the trial period.

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Profile picture for joanlee13 @joanlee13

I am at the end of my rope after 25 years of this. I rarely leave the house. Like you, I was in great shape. Never anxious about much. I had my gallbladder removed in 2011 and nearly died because the doctor cut my bile duct. It made no improvement on my stomach issues. No one can find out what's wrong with me. I've tried everything. I was divorced in 2011 and can't even imagine trying to date. I would be a nervous wreck. Diagnosed with IBS, but I think that's just a catch-all when they have no answer. Just recently I went in for physical therapy, and they found that I was constipated! I was shocked. I always thought I had the opposite. Nothing I eat makes any difference. I have a great diet, eat pretty Mediterranean style, drink lots of water and take 2 t of psyllium every day. I'm mystified, and I feel completely useless. I can't be a functioning member of society, can't even volunteer anywhere. All I can do is sit in my house and donate what little money I can to worthy causes. Other than that, I am just existing. I can barely go the grocery store without extreme anxiety, and half the time I end up in the bathroom. Can't travel anywhere, when I should be able to. I'm so tired of this after all this years. Tired of minimizing it, telling myself other people have it worse. It's my life, and 25 years wasted.

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Sorry to hear that, yes, it is easy to get distressed about it. Even my doctors have been uncomfortable talking about it. Of the three that were not too embarrassed to discuss it, I was told this:

1. "People who have your condition (EPI) oftein have diarrhea, and the Creon can cause this as well as constipation, which leads to breakthrough diarrhea, so I am not surprised that this is an issue."

2. "This is something that people with EPI have to deal with intermittently, at least from an anecdotal point of view. Since you also have SIBO, the low FODMAP diet can help, but its effectiveness varies for everyone." (The diet helped a great deal).

3. "The alternating constipation and diarrhea could have weakened or damaged muscles and nerves in that area (sphincter). Straining when constipated and trying to hold it can cause this over time. " I think this may have become part of this issue. Sometimes I am so far away from the restroom that it will start to feel like a painful cramp from the urgency, as even when wearing Depends, it is still time-consuming and embarrassing.

Luckily, at this point, it is mostly very light leakage if I stay on a low Fodmap diet; but there are a few times a month where the issue is severe. It is usually if I remain constipated for more than two to three days so I pay close attention to that. Usually, I take a suppository or mini enema if the Malox doesn't do the trick within 24 hours.

I have not been to a pool, sauna, jacuzzi, or the beach in years, unless it was an isolated beach for this very reason. I use to go all the time, feels so strange to cut that out of my life. I have considered the Navina inserts, but am reluctant to do anything that may exacerbate the condition.

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Profile picture for joanlee13 @joanlee13

I am at the end of my rope after 25 years of this. I rarely leave the house. Like you, I was in great shape. Never anxious about much. I had my gallbladder removed in 2011 and nearly died because the doctor cut my bile duct. It made no improvement on my stomach issues. No one can find out what's wrong with me. I've tried everything. I was divorced in 2011 and can't even imagine trying to date. I would be a nervous wreck. Diagnosed with IBS, but I think that's just a catch-all when they have no answer. Just recently I went in for physical therapy, and they found that I was constipated! I was shocked. I always thought I had the opposite. Nothing I eat makes any difference. I have a great diet, eat pretty Mediterranean style, drink lots of water and take 2 t of psyllium every day. I'm mystified, and I feel completely useless. I can't be a functioning member of society, can't even volunteer anywhere. All I can do is sit in my house and donate what little money I can to worthy causes. Other than that, I am just existing. I can barely go the grocery store without extreme anxiety, and half the time I end up in the bathroom. Can't travel anywhere, when I should be able to. I'm so tired of this after all this years. Tired of minimizing it, telling myself other people have it worse. It's my life, and 25 years wasted.

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joanlee13, i am living this life too for the past 2 years post gallbladder removal. Praying for relief or at least “control”. Keep trying to focus on my blessings and look for solutions. Meds and diet restrictions help and then out of nowhere comes the unannounced uncontrollable liquid bomballistic horrifying bowel explosion which no amount of protection can contain. Wondering if I live out “this” life chained to the toilet or get an
ileostomy and deal with those consequences. I just keep hoping that there will be a cure. Who knows if they are even trying to find one?? I want to be positive and hopeful so I will continue to pray that we find a solution that works and is shared for all suffering this condition.

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Profile picture for donnabe @donnabe

joanlee13, i am living this life too for the past 2 years post gallbladder removal. Praying for relief or at least “control”. Keep trying to focus on my blessings and look for solutions. Meds and diet restrictions help and then out of nowhere comes the unannounced uncontrollable liquid bomballistic horrifying bowel explosion which no amount of protection can contain. Wondering if I live out “this” life chained to the toilet or get an
ileostomy and deal with those consequences. I just keep hoping that there will be a cure. Who knows if they are even trying to find one?? I want to be positive and hopeful so I will continue to pray that we find a solution that works and is shared for all suffering this condition.

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Oh my goodness! I can’t believe your story- sounds so much like mine:(
I also had my gallbladder removed bladder removed (unnecessarily, unfortunately) and have wondered about the timing. I would love to stay connected and share info and/or support for how to live with this “challenge.”

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Profile picture for Cathy @njzmom

Oh my goodness! I can’t believe your story- sounds so much like mine:(
I also had my gallbladder removed bladder removed (unnecessarily, unfortunately) and have wondered about the timing. I would love to stay connected and share info and/or support for how to live with this “challenge.”

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i am currently researching Liraglutide -would prefer a holistic solution however until then - gastrojournal.org has a Brief Communications on REMISSION of bile acid malabsorption symptoms which sound promising but not FDA approved more studies needed blah blah blah...
GI doctor not on board yet - doesn't make sense they can prescribe it for weight loss and not BAM.......will keep up progress...hope others do as well - would be nice to have medical professional that would advocate for "us" who suffer.

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Profile picture for donnabe @donnabe

joanlee13, i am living this life too for the past 2 years post gallbladder removal. Praying for relief or at least “control”. Keep trying to focus on my blessings and look for solutions. Meds and diet restrictions help and then out of nowhere comes the unannounced uncontrollable liquid bomballistic horrifying bowel explosion which no amount of protection can contain. Wondering if I live out “this” life chained to the toilet or get an
ileostomy and deal with those consequences. I just keep hoping that there will be a cure. Who knows if they are even trying to find one?? I want to be positive and hopeful so I will continue to pray that we find a solution that works and is shared for all suffering this condition.

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I see a gastroenterologist NP who helps me problem solve how to deal with this. She is very helpful.

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Profile picture for tslayden @tslayden

I see a gastroenterologist NP who helps me problem solve how to deal with this. She is very helpful.

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What are you trying?

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Profile picture for Cathy @njzmom

What are you trying?

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I use immodium anytime I go out (up to 4 or 5 but she says I can use more if necessary). I use Lomotil if the diarrhea is very bad. I usually need only one dose of that. I take Metamucil twice a day. I eat a high protein, low carb diet and drink lots of water and zero calorie electrolyte drinks like Gatorade light and Powerade Zero.

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Profile picture for joanlee13 @joanlee13

I am at the end of my rope after 25 years of this. I rarely leave the house. Like you, I was in great shape. Never anxious about much. I had my gallbladder removed in 2011 and nearly died because the doctor cut my bile duct. It made no improvement on my stomach issues. No one can find out what's wrong with me. I've tried everything. I was divorced in 2011 and can't even imagine trying to date. I would be a nervous wreck. Diagnosed with IBS, but I think that's just a catch-all when they have no answer. Just recently I went in for physical therapy, and they found that I was constipated! I was shocked. I always thought I had the opposite. Nothing I eat makes any difference. I have a great diet, eat pretty Mediterranean style, drink lots of water and take 2 t of psyllium every day. I'm mystified, and I feel completely useless. I can't be a functioning member of society, can't even volunteer anywhere. All I can do is sit in my house and donate what little money I can to worthy causes. Other than that, I am just existing. I can barely go the grocery store without extreme anxiety, and half the time I end up in the bathroom. Can't travel anywhere, when I should be able to. I'm so tired of this after all this years. Tired of minimizing it, telling myself other people have it worse. It's my life, and 25 years wasted.

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I have had UC for 28 years now. It the past year , I add urinary inconti ence to the surprise "eruptions" from UC. I find the cleaning myself up afterwards the most difficult for me. If I am not careful I will get a UTI within 5 daus of one of these disasters. After all the clean up ( shower needed most of the time) I go take a 2-3 hour nap.( after an immodium).
I dont like leaving home. I only get out for dr. appointments and 1-2 times a month for a brief trip to some local place.
Most days I wear long t shirt nightgowns. I rarely put on street clothes anymore. Just for outings.
Next week I turn 70 and this past year has really brought home to me my limitations that changed my life . I feel old & forgotten.

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Oh Kate! Your message makes me so sad. Yes, I HATE having bowel incontinence, but you can’t give up. There are things to try and ways to work around it! I’m 66 now and still fighting it- if you would like to message me privately, I would be happy to connect. I live near Minneapolis.

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