Bowel or fecal incontinence and how to manage it

Hi, @njzmom. I agree - fecal incontinence is not fun. I had it before in my bed, twice. It accompanied severe diarrhea as a medication side effect, and boy, was I feeling humiliated. For awhile, I used some bed pads from a local big box store, and that gave me the confidence to fall asleep, without terror that an incident would occur.

I moved your post here so that you could connect with others talking about fecal incontinence, such as @p95 @slangston @deblf @hopeful33250 @wizdum @emyliander and others:

- Bowel or fecal incontinence and how to manage it https://connect.mayoclinic.org/discussion/bowel-incontinence/

@sallyw133 also may have some thoughts for you about making it safe to venture out.

At this point, njzmom, do you venture out, or do you skip social occasions? Do you experience this issue during the night and during the daytime?

I have struggled with the emotional distress of bowel incontinence due to a combination of EPI, SIBO, the medication used to treat EPI, and possibly just simple IBS C/D alternating, so I can relate. Losing a relationship during this time was especially hard, and I understand it is a lot to ask a new partner to accept, and am just now venturing back into dating.

Before the health issues, I had an intense exercise routine, diet, and was in incredible shape. This has been humbling, to say the least. After several humiliating accidents in public (not limited to light leakage), and in a hotel, nonetheless, I became increasingly neurotic about staying home.

The LOWFOD map diet helped a great deal, and getting back into exercise has as well. I am trying to be more positive in my thinking, and that has helped my mood, but accidents still occur. I just try ot be prepared: Extra Depends, wipes, latex gloves, and bags to dispose of discreetly, and if traveling, I sleep on a pad to help avoid problems in hotels. Having a spare change of clothes is imperative.

Choosing to wear Depends made a difference, but it took a long time to accept it. However, as awkward as it was mentally, it was not nearly as awkward as avoiding contact with others, or worse, having an accident. As I am a very social person, I simply couldn't take it anymore.

I have had occasional bed wetting and saw several urologists about it. They said as long as it is only at night and a couple of times a month, it is not a significant worry, considering my other health issues and age. Easy for the doctor to say, but I guess in the big picture, they are correct. I am still alive, and my overall health is improving, so there is that. At this point, if there is an issue, I simply excuse myself and deal with it.

I am currently going through pelvic floor rehab for not being able to hold back a bowel movement sometimes - mostly when the stool is rather soft. I just found out about a therapy for overactive bladder or fecal incontinence. It's called Axonics. My gynecologist is a uro-gynecologist who performs this procedure. I plan to schedule a consult with him about it. From what I've read, it's sort of like a pacemaker implanted in the buttocks that helps the nerves in the sacral area communicate with the brain to improve symptoms. It looks like you go through trial period with an external unit and if successful, they can implant it.

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?

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.

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.

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.

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.”

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.

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