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Bowel incontinence, newbie

12 posts in this topic

I can't find the right way to manage this problem.


I have CREST scleroderma. I am not young (71 years old) but I still have to work and feel very uncomfortable near people.


Can somebody give me some tips on what to do? What diet, any medication, anything that can help me? I even feel uncomfortable talking about this with my doctors.


Nobody in my family knows; I hide it, but it is getting to be worse each day.


Please help!!!



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Hi Nilda,


Welcome to the Forum, I'm glad you joined us. I think a number of members will join in on this topic.


I'm sorry you are having this problem, it has such a major impact on quality of life. We have quite a lot of information on bowel dysfunction in scleroderma in our main medical pages, but I think your first step ought to be to discuss this frankly with your doctor. There are many other causes of bowel incontinence than just scleroderma and it would be best to find out just what is causing yours. It might be something simple and easy to remedy, you just never know. I'd be really hesitant to recommend anything (none of us are doctors here!) because it could make it worse.


I have episodes of bowel incontinence and in my case, the cause is partly scleroderma, partly age and weakening muscles, partly occasional bacterial overgrowth, and partly irritable bowel syndrome. My doctor was able to determine the cause and proscribe medication that has helped quite a lot. My doctor is so funny and so matter-of-fact about the whole thing that I don't mind that he's a man - maybe seeing a lady doctor would be easier for you?


Warm wishes,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Suffering with bowel incontinence is not easy but do go and talk to your general practitioner about it, the first step is the hardest part you will find that they are very understanding and can suggest things to help or put you in touch with a specialist.


I suffer with this problem but 14 months ago had a Sacral nerve stimulator fitted and since then things have been 95% better, my problem was due nerve damage and probably due to problems after the birth of my daughter. I am so glad that I eventually mentioned it to my doctor who was great and very matter of fact about it all.


Do go and talk about your problems it can make a big difference to the quality of life.


Best Wishes



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Hi Nildasus


A warm welcome to these forums!


I'm so sorry to read that you have CREST (Limited Scleroderma) and that you're finding it hard to manage at the moment. Thankfully I don't have the gut involvement (at present!!) but I can empathise as I do have Limited Sclero and know how worrying this can be.


We have a LINK HERE explaining about it which I hope you will find helpful.


As Jeannie has said I also think that your first port of call should be a visit to a doctor to determine how best to manage your disease. As many doctors do not have the expertise to deal with Scleroderma, which is a very complex disease, it's much better if you can be treated by a Scleroderma specialist.


I'm sorry that there's nobody in your family that you can confide in; however now you've joined our forums you'll find that there will be plenty of new friends who will understand what you are suffering and will be able to help and advise you.


Do please post again and let us know how you are faring.

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Nildasus


Welcome. I agree, you really need to speak with your doctor about it so he/she can help you to manage it or as Jeannie suggests, talk to whichever doctor makes you feel more comfortable. I'm guessing the stress on you from trying to hide it likely is not helping you either? Do go, you need to find out why it is happening and I hope tell us how you make out? Good luck.

Sending good wishes your way!

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Hello Nildasus


Welcome to the forums, here you are surrounded by people with scleroderma so it's likely someone here can relate to anything you're experiencing.


I am sorry you don't feel able to talk to anyone about having limited scleroderma because you could probably make things better for yourself if you did, say a doctor for instance, in particular a scleroderma expert.


If you are getting worse you need to do something about it because trying to hide things only puts you under more pressure and stress is no friend of people with scleroderma.


Take care and keep posting.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Nildasus,


Welcome to the forums. You will find a friendly bunch here. I am sorry to hear about your bowels giving you grief. I am generally backed up, but from time to time get an unexpected clean out. I think you have to talk to your doctor about it. I am sure he will not be embarrassed or upset. I also bet that if you told some family members that you would find support there too. Vulnerability and seeking support are the most difficult, yet rewarding things we can do.



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nildasus, welcome to our ISN forum.


Most of us are pretty comfortable discussing just about everything here. If you don't wish to talk to your regular doctor about this then make an appointment with a gastrointestinal physician. That is whom you most likely eventually get sent to anyways. Have you had a Colonoscopy lately? These doctors are so use to discussing these things. You won't feel uncomfortable at all.


When I was dealing with severe bowel issues I thought I was ready to start wearing diapers for the second portion of my life. I hid my problem from most of my family also. I knew it couldn't keep going on. I would eventually get weak and something would have to be done anyways. I was hoping it would go away the same way it started happening to me. It continued to get worse until I was afraid to go to sleep or relax. Mine was a case of severe bacterial overgrowth. A few prescriptions of antibiotics and I was back to my regular self.


Once this happened to me then It reoccurred a couple more times the first year or two of my illness. I did have to take medication for about two years eventually, to get my entire system back up and functioning properly. I have to say I was so happy not to be dealing with those issues anymore.


Once you make the phone call you will be so relieved. You will be thinking how nice it will be to get back to normal. Keep in touch with us and let us know how things work out for you. If you need to message any of us privately you may do that also by clicking on the envelope below our Avatars (pictures) on the left of the messages we post. Tell us more about yourself when you wish.

Strength and Warmth,



Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Nildasus, you have come to the right place, welcome!


I have cREsT with bowel incontinence too, tried, unsuccessfully!, to hide this problem from my family and former co-workers (I can no longer work because of this disease). My family knows about my "code brown" issues now and they are very understanding about my need to stay home when I'm having a bad day, or the importance of making a shopping visit brief or checking out where the bathroom is upon arriving at a new place. My daughter is very vigilant about making sure I have a change of clothes with us and a disposable pad for my seat when we travel in the car, just in case.


I first told my rheumatologist about my incontinence at my diagnosis two years ago and even though I was very embarrassed about discussing it, he was very matter-of-fact about it as he told me it was a common problem in scleroderma patients. He referred me to a rectal GI specialist, but it has taken me 2 years to build up the courage to go!! I saw this specialist 2 weeks ago, and again was put right at ease talking with this doctor. After an exam, he told me I had a very weak anal sphincter typical to scleroderma, and also possibly a torn muscle due to a forceps delivery years ago that was not sutured completely.


He advised a teaspoon a day of a dissolvable fiber supplement, added to my morning coffee, to add bulk to the stool - so far I've found this helps to reduce the leakage, but definitely has increased gas and cramping, hopefully that will lessen as I get used to it. We also set up an appointment to start biofeedback training to strengthen my muscles. I'll have 3 sessions about a month apart each, then a reevaluation of the muscle tone. He said if these treatments don't help appreciably, there are surgical options we can discuss.


I have to echo what the others have said - don't try to figure this out on your own, talk with your doctor or find another one with whom you're comfortable discussing the issue. A treatment that works for one person might even worsen the condition for another. But do know there are understanding doctors out there and treatments available to try. And there are lots of us fellow sclerodermians here who will listen and support you and we don't hide anything from each other!!


Looking forward to getting to know you,



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Hi Nildasus,


I'm sorry you have bowel incontinence. It's fairly common with systemic scleroderma, which you have. I do fully know and emphathize with you about how hard it is to discuss some things at all, not to mention with a doctor. I suffered nonstop diarrhea and with lots of bleeding for a full year before I told my doctor about it, simply because I didn't think I could discuss it with anyone, not to mention a doctor. I wasn't even comfortable bringing it up with my own mother; and I had already been through childbirth. Very luckily for me it was not caused by cancer ("just" ulcerative colitis.)


Anyway, this needs to be broken down in several steps that make this manageable for you. The first is that you need to make an appointment with your primary care physician (unless you already have a gastroenterologist that you see). Pick up the phone right now and just plain schedule an appointment. If they ask what for (that is often a show-stopper for me) just say, "new gastrointestinal problems". If the nurse pushes for more than that, just say, "I'm sorry, but I'm bashful talking about this, will you just put down new gastrointestinal problems?" Sometimes they are trying to figure out how soon you need to be seen, and that's why they push for a reason. So you can say, "and I want to be seen within two weeks for it." That lets them know it doesn't have to be today or tomorrow, but also that it is not put off for months.


Okay, are you still with me?


Next, is your doctor's appointment in about two weeks. For that, write down on a piece of paper your issue. Let's say, "I am extremely embarrassed about this, and I don't know how to discuss it, but for months now I have been having bowel incontinence, about twice a week, and at the worst possible times. It is hugely embarrassing for me! I know this is a common problem with scleroderma. But I need to know what is causing it in my particular case, and how it can best be treated."


See, if you have written down your issue, include your feelings about it, then you don't need to have the nerve to discuss it, only to hand over the note.


Hopefully this process will also be an ice-breaker for others of us who need to see the doctor for sensitive, hard-to-discuss issues. If you're like me, you'll probably just cry trying to spit the words out the first time anyway, so just cut to the chase with a simple note -- and let it do the talking for you!


Will you please just pick up the phone, set an appointment, and let us know that you've done it, so we can all give you some more warm hugs? :emoticon-hug:

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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