Bowel incontinence

Posted by emyliander @emyliander, Tue, Jun 11 6:18am

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

@contentandwell

@emyliander I understand completely about not talking to your friends about these problems, they can be embarrassing. I don't talk to many people about it either, and even my son and daughter do not know I have fecal incontinence, they do know about my urinary incontinence. They had to so they would understand when we are out why I have to stop so frequently.
Ahhh, so you are basically right next door, in Maine! We have a small, rustic lakeside cabin on Lake Thompson. We used to be there every summer weekend and for vacation but it's getting to be a lot to do for my husband and myself so we are trying to disposition it to our kids right now but that's not an easy thing to do. Lots of complications.
JK

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@contentandwell , hello, we are lucky we don’t live in the 1800’s when they didn’t have disposable pants and pads, sometimes, no indoor plumbing. Always something to be thankful for. Good luck with the cabin. Emy.

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Every home had a chamber pot in each bedroom so no one went outside at night. However, someone had to empty them in the morning.

Our Grandmother said that she wanted to live, once they retired, as they stared out married life on the farm. It gave the grandchildren, and those who visited, the chance to know how an outhouse worked, how to use the pump at the sink and cook on a wood burning stove. They did not have an icebox, no one had big blocks of ice anymore, so they did have electricity and a refrigerator, no phone for the first few years. (The disposable pads were called "rags", and they were rags, which were rinsed out, washed, and dried to use again.)

mlmcg

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@emyliander

@mlmcg, thank you, I never knew so many people had the same problems, my best wishes are with you all. Emy

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I have been reluctant to ask my family doctor for a consult with a Urogynecologist, I eventually called. Her nurse called back and said the doctor had never heard of Pelvic Floor PT. The nurse however had looked it up and showed it to the doc. She told the nurse to call my Gastroenterologist to ask if it was something he would recommend for me. So now I have to wait to hear the result. Meanwhile I am wondering how I’m going to make out traveling to Spain in August. On a 7 hr flight and traveling and going to beaches.
Emy.

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@emyliander

I have been reluctant to ask my family doctor for a consult with a Urogynecologist, I eventually called. Her nurse called back and said the doctor had never heard of Pelvic Floor PT. The nurse however had looked it up and showed it to the doc. She told the nurse to call my Gastroenterologist to ask if it was something he would recommend for me. So now I have to wait to hear the result. Meanwhile I am wondering how I’m going to make out traveling to Spain in August. On a 7 hr flight and traveling and going to beaches.
Emy.

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@emyliander She’s a urogynecologist and she never heard of pelvic floor PT? Good thing she has a smart nurse. I can’t imagine that she would have a gastroenterologist prescribe it, that should be her call.
Doctors here, in NH and Maine, are often not as up on things as doctors in more densely populated areas, but the urogynecologist in Manchester is supposed to be good if you don’t mind waiting forever for an appointment. As I have mentioned though, I have basically all of my care at Mass General now except for my PCP. I really love that hospital. All of the doctors and nurses there are phenomenal.
JK

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@contentandwell

@emyliander She’s a urogynecologist and she never heard of pelvic floor PT? Good thing she has a smart nurse. I can’t imagine that she would have a gastroenterologist prescribe it, that should be her call.
Doctors here, in NH and Maine, are often not as up on things as doctors in more densely populated areas, but the urogynecologist in Manchester is supposed to be good if you don’t mind waiting forever for an appointment. As I have mentioned though, I have basically all of my care at Mass General now except for my PCP. I really love that hospital. All of the doctors and nurses there are phenomenal.
JK

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I didn’t make myself clear. It was my GP that hadn’t heard of Pelvic Floor PT. I still would have expected her to know about it though. I guess if she doesn’t know about it, it would be hard to make the decision as to whether it is nessasary. They could make a decision that it’s not, but not nessasarily be right. I’ll have to wait and see.

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@emyliander

Thank you, @astaingegerdm . Even though you had muscle damage, were you able to be helped by Urogynecologist. Have you tried PT ? I too wear a pad, I am not even aware when the incontinence happens, so until I go to the bathroom I’m unaware of it and worry about odors. Then theres the major cleanup with wet wipes that can’t be flushed even if they say they can. Apparently they still clog pipes. At night I wear adult disposable pants,
Thank you again for your input.

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I have over production of bile. I also have problems unaware i soiled my self. I am now taking collestipol 1gm in am and if I go out I take another. My problem started 10 years ago. I had my gallbladder out 40 years ago. I hate jt. But the medicine helps. I also know what foods set me off. I had to do my own research and come up with the diagnosis. Very frustrating when doctors do not help. I am retired nurse had never heard of this condition. I wear pads when I go places. Always carry xtra stuff. But I am thankful for the meds. Maybe try and see if it would work for you . It can. Constipate though but I find that better then standing in the middle of a store with poop running down my legs. Also sorbitol, malitol etc causes diahrea. I hate this condition.

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@tjitske

I have over production of bile. I also have problems unaware i soiled my self. I am now taking collestipol 1gm in am and if I go out I take another. My problem started 10 years ago. I had my gallbladder out 40 years ago. I hate jt. But the medicine helps. I also know what foods set me off. I had to do my own research and come up with the diagnosis. Very frustrating when doctors do not help. I am retired nurse had never heard of this condition. I wear pads when I go places. Always carry xtra stuff. But I am thankful for the meds. Maybe try and see if it would work for you . It can. Constipate though but I find that better then standing in the middle of a store with poop running down my legs. Also sorbitol, malitol etc causes diahrea. I hate this condition.

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Hello @tjitske, I admire how proactive you have been. You said, " I had to do my own research and come up with the diagnosis." For many of us, this has been the way we have learned about a difficult and/or hard to diagnose problem. In addition, you have worked to find out what foods and products will set off the loose stools. Undoubtedly, being a retired nurse has given you some insight and investigative skills.

You mentioned that you had your gallbladder out 40 years ago. Did this problem start at that time?

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@tjitske

I have over production of bile. I also have problems unaware i soiled my self. I am now taking collestipol 1gm in am and if I go out I take another. My problem started 10 years ago. I had my gallbladder out 40 years ago. I hate jt. But the medicine helps. I also know what foods set me off. I had to do my own research and come up with the diagnosis. Very frustrating when doctors do not help. I am retired nurse had never heard of this condition. I wear pads when I go places. Always carry xtra stuff. But I am thankful for the meds. Maybe try and see if it would work for you . It can. Constipate though but I find that better then standing in the middle of a store with poop running down my legs. Also sorbitol, malitol etc causes diahrea. I hate this condition.

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Could you have IBS? Your sensitivity to sorbitol etc is one of the symptoms of that condition—along with Intolerances of many other foods and their contents.

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I am sure it is the over production of bile. But yes all sweetness ending in tol give me a belly ache and diahrea. Many people have that reaction. It is also used in preps for colonoscopy.

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@hopeful33250

Hello @tjitske, I admire how proactive you have been. You said, " I had to do my own research and come up with the diagnosis." For many of us, this has been the way we have learned about a difficult and/or hard to diagnose problem. In addition, you have worked to find out what foods and products will set off the loose stools. Undoubtedly, being a retired nurse has given you some insight and investigative skills.

You mentioned that you had your gallbladder out 40 years ago. Did this problem start at that time?

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No it started 10 years ago. But got worse. It was awefull. Now with the RX I can manage it. And yes I feel disappointed that no one caught it sooner. I had lots of tests and all were negative. So I had seen this forum and from there ichecked, googled read about others, then a aquantance told me about her issues and what her doc told her and bingo. My gastro gave me the RX and with the first dose I had relief. Imagine that

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@contentandwell

@emyliander I understand completely about not talking to your friends about these problems, they can be embarrassing. I don't talk to many people about it either, and even my son and daughter do not know I have fecal incontinence, they do know about my urinary incontinence. They had to so they would understand when we are out why I have to stop so frequently.
Ahhh, so you are basically right next door, in Maine! We have a small, rustic lakeside cabin on Lake Thompson. We used to be there every summer weekend and for vacation but it's getting to be a lot to do for my husband and myself so we are trying to disposition it to our kids right now but that's not an easy thing to do. Lots of complications.
JK

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Hi Jackie, this is @emyliander, I have been referred finally by my GP for Pelvic PT, that was a week ago and I haven’t heard from them so on Monday I will call my GP and get their # . In the meantime I get emails from Harvard Health Medical and I just received an invitation to purchase an e-book on urinary and fecal incontinence, with up to date info on treatments and meds to help this problem. The cost is $18.00. I’m wondering if anyone else has purchased this and if you think it’s a reputable deal. Thanks for any info you can give me. Emy.

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@emyliander

Hi Jackie, this is @emyliander, I have been referred finally by my GP for Pelvic PT, that was a week ago and I haven’t heard from them so on Monday I will call my GP and get their # . In the meantime I get emails from Harvard Health Medical and I just received an invitation to purchase an e-book on urinary and fecal incontinence, with up to date info on treatments and meds to help this problem. The cost is $18.00. I’m wondering if anyone else has purchased this and if you think it’s a reputable deal. Thanks for any info you can give me. Emy.

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Emy, have you had a specific diagnosis of what is causing this problem? I ask because in my case, a GI told me I was incontinent (because of ongoing diarrhea) and sent me for Pelvic Floor therapy. A colorectal surgeon said therapy could help me control the urges somewhat problem but weak Pelvic Floor muscles were not causing the diarrhea. Turns out I have IBS.
I think if were you I would wait to order the book until after starting the therapy and finding out more about what is causing your problem. Good luck!

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@jackiem95

Emy, have you had a specific diagnosis of what is causing this problem? I ask because in my case, a GI told me I was incontinent (because of ongoing diarrhea) and sent me for Pelvic Floor therapy. A colorectal surgeon said therapy could help me control the urges somewhat problem but weak Pelvic Floor muscles were not causing the diarrhea. Turns out I have IBS.
I think if were you I would wait to order the book until after starting the therapy and finding out more about what is causing your problem. Good luck!

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In reply to jackiem95. I have been diagnosed with Celiac, IBS, and Microscopic Colitis, in that order, with a few yrs in between. I’ve had the diagnosis for many yrs, but the incontinence only for a couple of yrs. so I know why the diarrhea and constipation happpen, and I’ve been told that my rectal muscles are weak. But no one ever suggested anything I could do about it until I joined the digestive discussion. I’ve noticed that those who have had the PFPT say it has helped “somewhat “ so what are the odds of having it take care of the problem entirely. Would that be expecting too much, especially at me age ? My blood work shows that the Celiac is well under control, I’m strict with my diet. As for the other two diagnoses there’s not a simple answer.
Thank you for replying, I know everyone is different, so there’s no guarantee.
Emy.

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Hi everyone. I was having incontinence and was given Imipramine to take at night. It has solved the problem of having accidents in public but not the dumping and general constipation. I have been diagnosed with Celiac since 2008 and IBS since 2013. I was afraid to go out due to the accidents and now I can at least hold it till I get to a bathroom. Still, going to the bathroom in public stalls is not fun. I believe it is from (for me)the 5 days of constipation (or more) then my body's desire to rid itself of all the toxins inside it. My celiac panels are also very good, so I not I am not eating badly that way. I researched the foods that cause gas and bloating soooo I don't know what else to do. Stop eating?
Reny

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what do you guys think pf the Keto diet? Would that be too hard on a thyroid patient? I also have Hypothyroid (along with everything else).

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