Scleroderma

[Carp84]

Hi there, I've had scleroderma for just over 5 years now and have pulmonary hypertension and ILD (interstitial lung disease). Over the past few months my bowel habits have changed. I'm not sure whether this is to do with the scleroderma, I tend to struggle to go and when I think I can go all that happens is like a leakage but not of poo. Eventually I do go but it's nowhere near normal. I don't see my rheumatologist for a little while. Any suggestions greatly appreciated.

[OldTed60]

Hi. Someone else has just posted here about scleroderma bowel as well since just replied at some length and you may want to read. For me I have stoma now having had motility tests to confirm my gastroparesis and slow transit colon - both classed as severe.

They need to know whereabouts in your bowel the damage is that’s causing your dysmotility. I’ve been taking linaclotide for years having tried all the laxatives and other interventions such as water irrigation and prucalopride, which made me really unwell. I take domperidone but only allowed one a day now due to it being associated with heart problems. I also take Rifaxamin two weeks on off for SIBO and occasionally sodium picolax sulphate when I’m getting bloated and need to fully empty out.

I keep to a low fodmap diet, avoiding all roughage/ fibre and red meats, full fats, gluten etc. I am prescribed an Ensure a day but these days just have a small amount in decaf coffee daily. It’s the opposite of a wholesome diet but it works for me and I’m able to add smooth nut butters and marmite with vegan cheese slice to rice cakes and nibble these at meal times. I miss good, healthy food such as salads and green veg but not enough to endure the pain these “healthy” foods causes me now.

[Deby177]

Try psyllium husks but not the powder dissolve 2 teaspoons in hot water 1st thing morning please don't use powder type it goes lumpy, also add ginger if your into smoothies fresh type peeled and chopped also lower tummy massage is good start lower right just keep working round in an n shape to lower left.Bowel issues are a problem I have mixed connective tissue disease.,raynauds , ibs having lung abnormalities investigations at minute defo something going on their seem to only cope with soft stew type foods anything very solid like Christmas Dinner totally sent my tummy wowooooo for 4 days and I only had small plate.

Very frustrating. My other problem is nails loose them all not fungal tried everything 🙄 not sure if it could be lung thing wish I could get more defined diagnosis

Keep me updated, we need support

Deb

Nails embarrassing

[Jilliebean61]

Not sure if its to do with the scleroderma, but any change of bowel habit should definitely have a colonoscopy without delay, to ensure its not something else.

[Pomoc]

My wife suffered an emergency with faecal impaction in June which had a buildup a little bit like this, over 3 weeks after a flareup of her scleroderma following a long swim in the sea. We got no advice or support as she was not yet under the care of a rheumatologist (now finally is one year after diagnosis!). It could be that you need to speak ASAP to your GP to discuss how to regulate your bowels/diet . My wife uses castor oil and the problem has not recurred but obvs you must not necessarily do as she does.