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Anyone with Systemic Sclerosis or Scleroderma?

Autoimmune Diseases | Last Active: 10 hours ago | Replies (12)

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@grandmal65

Thank you for sharing. Looks like your GI issues have been followed with gastroenterologist. Polyps can bleed, which explains your GI bleeds.

For scleroderma, I follow the same diet - no fried food, no spice, no acid, no high sugar, limited milk products, no caffeine, no alcohol. Mostly soft food, like tuna salad, soft breads, boiled eggs, scrambled eggs, boiled vegetables (cauliflower, broccoli, carrots). Bananas are OK. No raw fruits and vegetables, or mixed salads. No salad dressing. Occasionally, medium well hamburger with no spice is OK. No fries.

Lentils were working well for a while to help with regular stool, but then I started getting nausea post eating even homemade well-cooked lentils, not sure why.
Very limited diet, but it seems like the only solutions.
With scleroderma, esophageal reflux (GERD), dysmotility, GI fibrosis, constipation, and malabsorption are main issues. Proton pump inhibitors are recommended for reflux. Geri-Kot (Senna) and fiber supplements like Metamucil are recommended for constipation. Although, with polyps, it is better to consult your doctor first if those are good treatment options. As they say, every patient is different.

Please keep sharing your scleroderma story. Hoping to get more people to participate.

Wishing you best!

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Replies to "@grandmal65 Thank you for sharing. Looks like your GI issues have been followed with gastroenterologist. Polyps..."

@altabiznet

Update to my autologous Stem Cell Transplant for Systemic Sclerosis or Scleroderma (done at Duke, NC).
Before transplant: 80% of normal functioning with driving and independent living; skin thickening and discolorations; joints stiffness; fatigue; Raynaud's; GI sensitive.

11 months post-transplant: 20% of normal functioning. Persistent issues: fatigue (need caregiver help with cooking cleaning, shopping, driving); vasculitis and Raynaud's; joint stiffness; fluid retention post chemo and steroids; GI sensitive; hypertension and suspected heart failure post chemo. Skin thickening and discolorations got a little better, the only improvement I see so far.
Please share your experience with scleroderma treatments.