I have systemic scleroderma with my main symptoms being Raynaud's, bronchiectasis and gastro problems, specifically loss of motility and SIBO. At the moment I have had diarrhoea every day for a fortnight but because of the loss of motility I am very wary of being constipated – so: any advice re controlling the diarrhoea without getting bunged up?
Coping with diarrhoea: I have systemic... - Scleroderma & Ray...
Coping with diarrhoea
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Taking probiotics (yakult) and fermented foods (sauerkraut) helped me
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Alas, didn't work for me...
Each person is different, but I found a small amount of Imodium syrup, or one Cocodamol, may be worth trying to gauge the effect.
Why Imodium syrup rather than tablets? Is it just because it's easier to control the dose? Can you buy the syrup version over the counter in the UK? I might try that. Not sure how a painkiller like cocodamol could help?
Hi, I got imodium syrup on prescription after a discussion with my gastroenterologist about the same problems with taking the tablets but pretty sure it’s over the counter too. it’s been really useful I’m underweight on top of fluctuating between no motility and uncontrollable. You can control the dosage far easier, I take 0.5ml-1ml at a time, give it a few hours and can take a bit more if it’s not done the trick.... touch wood I’ve not been bunged up like I used to get, been 5 months now.
I find the codeine in cocodamol too much, always get constipated with that. My body’s too screwed up for Probiotics and fermented foods, things like that cause mayhem...my veins burn all over, I get angry hives burning rash everywhere too, oh yeah and diarrhoea for good measure. if you decide to try any of that i’d recommend testing small amounts at first, I don’t know about others here but I feel like I’m playing a never ending game of Russian roulette... what’s this body going to kick off over next! 🤣.
Hope you find something that helps soon.
Good to hear from someone who has the same as me – no motility alternating with uncontrollable, and very underweight! We are all so different. I can't find Imodium liquid in any chemists so will have to try with the tablets. I will break one in half and see how I go. Today I am as "normal" as I ever get! That will probably last another day and I'll be back to diarrhoea. Russian roulette! exactly.
Try kefir it’s really good, also if you haven’t been referred to a gastroenterologist you should ask
I see my gastroenterologist at least once a year. He prescribed antibiotics but they didn't work at all. He also suggested an incredibly expensive probiotic that tasted disgusting and didn't work either.