Scleroderma & Raynaud's UK (SRUK)
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I am looking for others that have Scleroderma that mostly affects the intestinal tract/ small bowel

My father, who is 65, was recently diagnosed with Scleroderma after a a few years of different doctors, diagnoses, and medicines. About 12 years ago, my father had to have the tip of one of his fingers removed because his circulation was so bad that the tips were dying. He stayed cold all the time, his fingers felt as though needles were sticking them. About 3-5 years ago, he was diagnosed with Reynaud's, which we were informed that when his fingertip was removed that should have been our first indicator of Scleroderma, but we didn't know.We finally were able to meet a Rheumatalogist in our town within the last 6-8 months, who then diagnosed him with Scleroderma. She stated that his intestinal tract had lost its ability to move the food along. The food becomes stale in his intestines, which causes an overgrowth in bacteria; the bacteria is what is taking all of his nutrients, eventually leading to bloat, vomiting,diarrhea, etc. The doctor stated that the bacteria thrives on sugary products, which is what we were trying to fatten him up with.

For the last two years, my father is/was losing weight rapidly, constantly throwing up, bloating, etc. He didn't have weight to lose in the first place, so now my father is at 127lbs. He hasn't been able to put on weight because of malabsorption of the nutrients in his food into his intestinal tract. We have tried protein shakes as a way to put some weight on him, but it is hard for him to find time in his busy work day to sit down and make a protein shake. He likes the taste of the protein we bought, but we are still wondering if there are others out there like him. I know that with Scleroderma it typically attacks the lungs and heart, but after all the tests done, the doctors tell dad that he has the heart/lungs of a 30 year old. Dad's disease seems to only be affecting his GI tract as of right now.

With all that said, my question is: Are there others out there with this type of GI Scleroderma? What are you using to put on or maintain healthy weight? Are there certain foods to avoid? Better types of foods to eat? Any tips or recipes are greatly appreciated!

2 Replies

Does your father take medication - I was put on Laprozone 3 x daily which caused bacterial overgrowth and led to an hospital admission. I am now on Omeprazole 20mg twice daily. This suits me much better and although my bowels are more regular than normal I do not have Diahorea. I attend the Royal Free Hospital London twice yearly and they liase with my consultant Rheumatologist - he referred me. This hospital is the Ritz for Scleroderma and the attention you get is wonderful. I also have Lung Fibrosis caused by Scleroderma.


Have similar problems to your father!! Have spent last 7/8 years trying to get to grips with the problems. Had 22 hospital visits last year and they tried various things including an implant. Nothing has worked so far I've lost 2 stone and been given fortisip to try and put weight on. It'd be easier for your dad as its made up already. I poor it over my bowl of cereal at breakfast. My main problem is the constant diarreah some days I am in 20 times! Can't go out some days and my back aches so much. I am starting a new regime on Tue of 1antibiotic for a week then a second antibiotic for a week then two weeks off. This is then repeated three times (so for three months) I'm keeping my fingers crossed for a bit of relief!!!


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