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Fecal Incontinence


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#1 birdie

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Posted 05 May 2007 - 06:52 PM

Hi:

I am new to all this and still in denial about whether I have scleroderma. I have had raynauds for over 30 years and have developed a low motility esophagus within the past 6 years, with significant Barrets. I have had a steady progression of losing control of my bowels over the past 10 years. At first it was only when I stressed myself physically. I like to walk marathons! My OBGYN said this. .....but it got worse. So I went the biofeedback route and also did a secca procedure. (figuring if I really have scleroderma, my bodies ability to overproduce collagen would help!!). After 7 months, the results were underwhelming, so I am now trying out a sacral nerve stimulation device to see if that helps.

This is an extremely embarrassing symptom, and I hope this electrical device will help.

Anyone have this problem?

#2 Sheryl

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Posted 06 May 2007 - 12:11 AM

Birdie, I had a problem with that. It continued to get worse. I was afraid to go to sleep at night. Every time my body relaxed I would lose control. My brain wouldn't tell my body not to have a movement. It got to the point it would happen during the day and I wouldn't know it was happening until too late. My gastroenterologist gave me a prescription for bacterial overgrowth. There are several medicines to nip the problem in the bud. Its a easy thing to fix. Bacterial overgrowth happens two to three times a year. I even bought Depends at one point. It is scary that your mind can't even control what is about to happen. This can become an everyday occurrence. I'm not sure if what you have is what I battle with but it sure sounds like it. In the back of my mind I was thinking when I get old this might be a problem not but not in my 50's. I would call your physician and let him know the seriousness of the situation. Leviquin and Xifaxan are two of the different drugs prescribed at different intervals throughout the year if you want relief and no more fears of embarrasing situations. Good luck. Let me know if you find relief. Sheryl
Strength and Warmth,
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#3 Heidi

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Posted 06 May 2007 - 03:56 AM

Hi Birdie,

Welcome to the forums! I am glad you have found us and joined in, but so sorry it is because of your symptoms. Are you under the care of a rheumatologist? I ask because you fear you might have scleroderma, but aren't sure. Perhaps a rheumatologist could give you a definitive answer and help with understanding what is going on with your body. I do hope you can find some relief soon!

Again, welcome!

Warm wishes,
Heidi

#4 Sweet

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Posted 06 May 2007 - 06:32 AM

Hi Birdie,

Welcome to the Sclero Forums! We are so happy to have you. You will find a lot of information, support and friendship here.

I can't say I have ever had that problem, nor have I heard about it as a symptom of SD. Are you seeing a rheumatologist/gastro?

I do hope you can find some help soon. I look forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#5 Shelley Ensz

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Posted 06 May 2007 - 09:46 AM

Hi Birdie,

I'm sorry you have fecal incontinence. Unfortunately, it is a common symptom of systemic scleroderma. We have a section on it on our Bowel Involvement page, at
http://www.sclero.or...el-incontinence

There have been very good results reported for sacral nerve stimulation, and I hope it does the trick for you!
Warm Hugs,

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

#6 WestCoast1

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Posted 06 May 2007 - 09:46 AM

Hello Birdie,

I have placed a link below that will take you to ISN that includes a few links dealing with Bowl Incontinence. I hope that this helps, and as others have mentioned, a rheumatologist along with the Gastro. could give you a better idea of what you are dealing with.

http://www.sclero.or...el-incontinence

I hope that you find a treatment that works for you!
*WestCoast*

********

#7 Sheryl

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Posted 06 May 2007 - 12:33 PM

Birdie, are you taking anything daily to keep your system in order. I take a prescription to keep things in order after taking antibotics. I have tried several meds and this so far is the best. I have been using it for over two years. Other things stopped working after a short while or didn't work at all. Let me know if you want to know the name of it and I can send youa private message. Let me know something about the sacral nerve stimulation proceedure. Always nice to know what happens in different situations. Thanks, Sheryl
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#8 relicmom1

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Posted 06 May 2007 - 01:29 PM

Hello! I am so sorry you are having this problem. You know, it never ceases to amaze me tha when we get to talking about an issue we ourselves are having, not seeing any connection to the Sclero, you see other posts about the very problem you are having! I, too have the fecal incontinence. There's no rhyme or reason that I can put my finger on that seems to be the "trigger" It doesn't matter whether I am having a go around with constipation, diarrhea or normal stool. It seems to be like a "leak" and yes it is embarassing because I never know when it will happen. I haven't had to go the Depends route yet. You can now buy feminine wipes that are individually wrapped so you can carry them in your purse to have at a moments notice. I carry an extra pair of panties with me and I never wear light clothes anymore. I am a bad patient, because I know I need to tell my gastro and rheumatologist, but I haven't yet. I will keep you in my thoughts. Please let us know how it goes.
Peace :)
Barbara aka relicmom1

#9 birdie

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Posted 07 May 2007 - 12:24 PM

Thanks for the support. If this doesn't work, will try something else.

#10 birdie

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Posted 07 May 2007 - 12:30 PM

Yes, am seeing a rheumatologist guy. He is rather vague about this problem, however.

He has diagnosed me with crest and keeps watching lung and pulmonary function.

#11 janey

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Posted 07 May 2007 - 12:56 PM

Birdie,
Sorry you're having this problem. It's certainly not a pleasant one. I use to have some leakage and there were days when I just refused to go out of the house. I did find that certain things in my diet triggered it so I've reduced those items and in some cases eliminated. Some things are just too hard to completely eliminate, so I just live with the results for a couple of days afterwards. The items that do it for me are heavy grains, certain types of crackers, and tortilla chips. Mostly those items that are hard for our systems to digest and are "dry goods". Of course being a chips and salsa fanatic, I take another prilosec and munch away knowing that tomorrow will be a "rest" day.

I hope you find some relief soon.

Big Hugs,
Janey Willis
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#12 birdie

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Posted 07 May 2007 - 04:55 PM

Thank you! Keeping my fingers crossed. Thanks for the input.

#13 Sally

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Posted 09 May 2007 - 03:35 AM

Hi all. I have not posted in a long time, but decided this morning to get on the board and see what has been happening. I have had a lot of stress in my life lately, and think I have gone into denial that my Sclero is getting worse. I was amazed to see the topic of fecal incontinence, it has just started within the past few months, really thought it was my age(66), but now think it might be the Scleroderma, also having urinary incontinence, do you all think both of these conditions are part of Scleroderma? It is getting to the point I don't want to go anywhere, for fear it will happen, as I have no warning. Would love to hear from any of you, Love, Sally

#14 Sheryl

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Posted 09 May 2007 - 12:28 PM

Hello Sally, I also had Urinary Incontinence. That was fixed with a Bladder Suspension, where a mesh sac was made to hold may bladder up in a higher position. Bowel Incontinence is a bit harder to rectify. A gastroenterologist is the best person to see for the bowel problem. If you haven't had a colon check up then it will be done by him/her. If it is just caused by bacterial overgrowth then the fix is rather easy. You get your self assurance back quickly. If it is something more complicated then desperate measures may be needed. But, you will not be afraid to leave home. Your fears will go away quickly. Sheryl
Strength and Warmth,
Sheryl

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