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/?pg=15

@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 fecal incontinence for about 10 years now. I am in my mid 60’s. I have seen numerous drs, therapists, and dieticians. I had a neurostim put in in January. The only thing it has helped with is making me more aware of how close I must stay to the restroom. As soon as I think I’m “safe” to venture out, at least half the time I have a total “loss” episode.

I know things could be, and ARE, much worse for others, but this is not fun. For years my drs have told me so many people deal with this issue, but I HAVE NEVER MET ONE!!! I would love to connect with even one other person with whom I can share these struggles and maybe get some new suggestions!

Thanks to all of you out there. It’s nice to have people.🙂

I am dealing with diarrhea and urinary in the presence of coughing. This is no joke. I have family with this issue. It has been 3 months now. I feel for you! I hope it gets better for us all.

Have an appointment booked with a colorectal surgeon at the end of February, day before I turn 70, Lol. Hoping he will have some good suggestions. A gynaecologist was not helpful at all. I’m so tired of the get more fiber, drink more water, it’s IBS & all in your head attitude. I suspect helping older ladies with fecal incontinence is not high priority for many. Keeping my fingers crossed that this doc will be different.

I have struggled with fecal incontinence for about 10 years now. I am in my mid 60’s. I have seen numerous drs, therapists, and dieticians. I had a neurostim put in in January. The only thing it has helped with is making me more aware of how close I must stay to the restroom. As soon as I think I’m “safe” to venture out, at least half the time I have a total “loss” episode.

I know things could be, and ARE, much worse for others, but this is not fun. For years my drs have told me so many people deal with this issue, but I HAVE NEVER MET ONE!!! I would love to connect with even one other person with whom I can share these struggles and maybe get some new suggestions!

Thanks to all of you out there. It’s nice to have people.🙂

I have had a jpouch since 1996, and in Nov 2023, I began having night time incontinence, it seemed to come on suddenly. I don't go to bed without a pad or some type of incontinence underwear, I always wake up too late, not usually a big amount, but can be numerous times/night. I take Imuran, Imodium 6-8 tabs/day, Cipro or Flagyl, and Metamucil daily to try to thicken or bulk up stool, but still is very loose (pudding like). I am going to Mayo next week for a scope of my pouch, a manometry procedure & a later a MR Proctogram imagery. I am hoping to get some answers and solutions. Best of luck with your issues.

Oh my goodness- that sounds very difficult - I’m not familiar with what a “jpouch” is but it sounds difficult - for whatever reason, I’ve never had night time incontinence 🤷‍♀️
I’d love to hear more about your journey! Good luck at Mayo

I know this is an old post, but if you are still suffering, may I suggest you look into Axonics for sacral nerve stimulation. It has been shown to help with both bladder and bowel incontinence. I only have bowel incontinence probably from nerve damage from the birth of my only child which was 36 years ago, but my problem has been getting steadily as I have aged. I'm 70 years old now and have been struggling with bowel incontinence for many years. My daughter weighed in at 8 lbs. 7-1/2 ozs. and they had to use forceps to get her out plus I have a very small frame. My urogynocologist performs this procedure. I'm not sure what other specialties do it. It does require a trial phase where leads are place in the sacral nerve and all the wires and battery are taped to your backside. If you pass the 1-week trail with a 50% or better improvement in urgency and number of bowel movements, you go on to phase 2 which is surgical implantation of the device/wires. I tried everything from keeping a food diary, to low FODMAPs, to increasing my fiber, to Pelvic Floor Rehab, to daily Imodium (which helps, but causes a rebound effect for me). I am only 2 weeks post op from having the implant and have seen a dramatic change in urgency and number of bowel movements. I wish you the best of luck.

I was initially diagnosed with ulcerative colitis, I had my large colon removed in 1996 and they formed a j-pouch out of me small intestine and reattached the pouch to my rectum so I do not have any type of ostomy bag, my j-pouch is my storage for stool. I have not had any issues really until Nov 2023, so really kind of stumped why it started so randomly and has lasted this long. I have not had a pouch scope for about 3 years, no change in meds, I just don't wake up in time to get to the bathroom, also have no pain, but alot of gas, which I think contributes to the leakage.