Scleroderma

So, it would appear that my scleroderma is now affecting my lungs, and having had an endoscopy yesterday, I've found out that my oesophagus & small bowel are covered in ulcers, & according to the consultant, "looks like a dogs dinner down there". Different, stronger medication to try to stop acid damage, then discussion to sort out trying to eat, as a diet of porridge & ready brek is getting tediously boring now. Let the next battle commence 😥

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  • Hello, sorry that sounds awful - do you have any friends with crohns maybe they've some advice on diet?

  • Keep going, we are all there with you.

    Complan for a change of flavour?

  • Have you tried googling gastropareses diet guidelines. I understand the acid reduction need because that is me too but porridge and readybrek seems more than tedious to me. I can manage mild soups, nothing spicy or peppery of course, yoghurt, mashed potato and gravy, cooked fruit mild again, such as peaches and pears and I find Californian oranges are OK but maybe not for everybody. Life with sclero is stressful enough without having to eat boring food for ever. Banana smoothie with vanilla icecream, whipped cream with the fruit, lots of things most people would say are nono because of fat or sugar content I consume with gusto because dietician says we need the calories any way we can get them.

    Chin up and best of luck. All that said I have hardly eaten since day before yesterday because of hospital visit for special CT so am hoping today willbe yummier, so I know what it is like.

  • Thank you, will look up diet. Good luck today.

  • Gosh sorry to hear that, im new on here and its all a learning process for me. Was diagnosed around 1yr ago with scleroderma, have had symptoms of raynauds 5yrs ago. Tests still ongoing, hiatus hernia discovered on Tues past. Am discovering now about things i can eat and things i must stay clear of. Hope u get sorted out soon. Good luck.

  • Hi Sharonmcallister: I too am working through what I can and cannot eat. I have been to 2 nutritionist they don't really know how to help me. They did not know enough about Scleroderma. If you have any luck with that I would like to here what you have tried.

    Thank you, Rita

  • Hi Rita, i am on lansoprazol 30mg, 1 in morn half hour b4 breakfast and 1 in evening half hour b4 evening meal, usually around 5pm. Then ranitidine as well b4 bedtime if required. I try not to eat after 6pm. No spicey food and no fizzy drinks. So far this has helped me a great deal!! I have never seen a nutritionist, its just a case of trial and error on my own. I have kept a steady weight in the 3yrs since i was diagnosed even though im on a daily dose of steroids. Oh i take amlodipine as well, which has helped greatly with my raynauds. Hope this info is of some help to u!

  • I must be a glutton (no pun intended) for punishment, as I still eat spicy foods. Although more recently I've been getting much worse stomach probs wise.

    I get that thing where u just can't swallow food at all, with crippling heartburn as a side order. :(

    Tbh I've never been referred to a nutritionist and I've not pushed to see one either, maybe I should.

    My last endoscopy I had to have loads of ulcers cauterised and the doctor told me it's one of the worst he's seen. I guess I've got so much going on I kind of forget this side of my illness, at least when the burning subsides.

    I really hope things pick up for you tho, all the best and stay strong.

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