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summer

Treatments for Bowel involvement!

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I haven't posted for some time, but I have CREST/Limited Scleroderma, with

bowel involvement.

 

I take it that there is a lot of bowel problems with people on this forum, and am wondering, what treatment you have had, and whether you have had to resort to having an ileostomy?

 

Thanking you in advance.

 

Summer

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Hi Summer, sorry you are having bowel issues, I can sympathize completely.

 

I've had stool incontinence for a couple of years, much worse when my doctors had to double my Nexium dose and added Zantac because of increasing voice hoarseness and cough due to reflux. Although the meds have helped the voice issues, they made my stool quite loose and watery and almost impossible to control daily leakage. Also, I only get a minute or so of warning before a bowel movement, so it is imperative for me to stay near a bathroom.

 

After much procrastination because of embarrassment, I finally went to a rectal specialist that my rheumatologist recommended, said he had a lot of experience with his scleroderma patients. The specialist started me on a daily teaspoon of over-the-counter fiber (added to my coffee - very little taste alteration!) and also, at the time I had been taking pain medication but it was taken off the market here in the US -- he prescribed a different pain med which has a known side effect of constipation. These two changes have helped make my stool more formed, less water, and instead of having 10-12 small, watery bowel movements daily with leakage in between, I usually have only 2 or 3, mostly in the mornings, so I can more safely plan an afternoon trip out of the house and be reasonably confident of not having an accident. I still have days of diarrhea, maybe 3 or 4 days a month, which may be due to diet, but I haven't figured out a connection yet to what I've eaten to cause it -- I should keep a food diary! I do have to say that, especially at first but still continues now, I have a lot more gas and intestinal cramping, but it's a reasonable trade-off for me to have more control and confidence leaving the house, traveling in the car, etc.

 

I've also started rectal muscle biofeedback training. This involves a probe inserted in the anus, and the doctor measures the strength of the muscle as I try to squeeze it. Then I had 2x a day of squeezing exercises to do, and another measurement of muscle strength after a month. I had a significant increase, they said around 20% improvement! I'm to continue this for another 2 months, and then I go back to the doctor to discuss my options. At the first visit, he said that if there was little or no improvement after 3 months, there are surgeries that can be done to either reconstruct the anus muscle and strengthen it, or electrical stimulation devices that can be implanted to control the muscles. At this point, though, I'm very happy with the progress so far, and probably wouldn't consider any surgery, but I know others on the forum have and I'm sure will post their experiences.

 

Sorry to be so lengthy but I wanted to give you some hope! I put off going to this specialist for 2 years because I just accepted my situation, thinking little could be done and that it wasn't worth the embarrassment. I was totally wrong, the doctor put me right at ease and just a few simple changes have made a world of differnce for me.

 

Hope your doctors can give you some relief,

 

red

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Hi Summer,

 

Sorry to read that you're having unpleasant bowel issues.

 

Thankfully I haven't suffered with this myself, so I'm afraid I can't advise you from my own experience. We do have a LINK HERE about GI and bowel involvement which I do hope you'll find interesting.

 

I hope that some of the suggestions in Red's helpful and informative post will be of help to you and will enable you to cope with the condition a little better.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Summer

 

I have bowel issues & went through a similar process as Red. Just over 12 months ago I had an electrical stimulator implanted and it has made a big difference to me. I do hope that things get better for you soon.

 

Buttons

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Hello Summer

 

Here's a link to Button's thread about sacral nerve stimulation.

 

Take care.


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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Hi,

Bowel problems were the start of the whole thing for me. Not sure if they were related, but my autoimmune stuff started with ulcerative colitis. I suffered for three years because I was nursing a new baby and finally had to have a total colectomy. No ileostomy though I had what is called an ileo-anal pull through, or J-pouch. Way better than colitis! Hope you are not too sick, just so you know there are options.

Karen

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Thank you all who responded to my post.

 

I am seeing a surgeon today, about having a possible Ileostomy, so I am hoping today I will know what is happening.

 

I shall let you all know how I get on.

 

Take care

Summer

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