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I was diagnosed with diffuse systemic scleroderma about 1 year ago. Since the diagnose I've had to deal with lot of problems, like many esophageal problems, severe GERD, painful joints, digestive dysmotility, lung involvement, and very embarrassing problem with bladder incontinence. It was really bad situation for me but I learned to live with this somehow. I wear sanitary napkins everyday and I've adapted my lifestyle. Some days are better than others. When I go out I carry extra pads with me. I thought it was the worst thing I could expect... But, recently I've noticed bowel leakage. I though it only happened once, but then it happened again, and again. It's really embarrassing and gross problem. I can't go out because I'm anxious that others will notice my unpleasant smell.  I was embarrassed to talk to my doctor about it, but when I finally did, he told me that incontinence is common among scleroderma patients. He prescribed Metamucil 2-3 times a day, but it doesn't help. Has your doctor recommended anything that helps?


Hello, Guest... I am sorry to hear about the incontinence issues that you have dealt with as of lately.  For the fecal incontinence, anything that adds bulk will help, such as Metamucil. You may need something more if you are still having fecal incontinence.  You should ask the doctor about the urinary incontinence and if there is anything available to help that.  I wish you luck in getting the help you need.  

Are there any scleroderma patients out there that have similar experiences?  What did the doctor do for you?  What are the treatments, if any?  Are there any medications or surgical procedures to help with urinary incontinence?  Do Kegel exercises help?