Colostomy due to Scleroderma, Dietary advice needed

[tenfou]

Hi, I am looking for advice for my Mum who is 87, has had scleroderma for 50 years, has severe oeasophageal dis-motility, had a colostomy about 14 years ago due to bowel dis-motility/peristalsis and suffers constantly with stomach and back pain, bloating, blockages in the colon, nausea......... and ended up going in to hospital on Christmas Eve with a blockage which just wouldn't clear despite lots of cosmocol (she normally takes 2 a day). They gave her a massive dose of Laxido in hospital along with pain meds (she takes Zapain all the time for bowel pain) which cleared blockage explosively, and she was allowed out Christmas Day. I make soups for her, liquidized so that she can swallow them with her narrowed oeasophagus, and understand that low-fibre diets can help, but she feels that she should have high fibre for general health ie wholemeal bread, digestive biscuits etc. She sticks to chicken or fish, cheese, but also loves bounty bars for a treat, and I think coconut may not be a good idea? Can anyone give me some advice as to what is sensible for her to eat to try and stop the blockages? Thank you.

[cowhide]

Sorry to hear of your Mum's problems, I am not qualified to respond. I think it's really important that you get a proper referral for her to an NHS dietician. It's so important that food is enjoyable, nutritious to fulfill all her dietary needs but also comes with the minimum of complications.

[tenfou in reply to cowhide]

Thanks very much for responding. Unfortunately we haven't had much success with the nhs dietician as no-one in our area has any experience with systemic sclerosis. We hope to see the bowel consultant in the next few months (last seen over a year ago), but up to now he hasn't been able to recommend a source of good advice on diet. We think that personal experience of her situation would be invaluable if anyone could let us know how they have coped. Best wishes.

[cowhide in reply to tenfou]

Might be worth giving SRUK a ring to see if they can help in the interim?

[tenfou in reply to cowhide]

Good idea, thanks, will try contacting SRUK. Happy New Year

[Hidden in reply to tenfou]

Hi. I spoke to a colorectal surgeon at some length months ago by phone and discussed my ongoing problems with intractable bowel issues, overflow incontinence and other stuff. He said I was describing systemic sclerosis damage and arranged motility tests for when the pandemic is over. He said he would help me self manage this as best he could.

He gave me a self irrigating kit and another specialist medicine to try, Prucalopride. This was awful so I went back to Linaclotide - which has completely stopped working now.

So he then recommended I tried a capful of liquid Senna daily with the self irrigating kit and as high a roughage diet with as much water as I could possibly take during the day. I’ve really struggled with the high roughage because my taste buds and teeth and swallow mechanism are all up the spout so I just stick to prunes and apricots and homemade bread without gluten (my husband is gluten intolerant).

I have to drink loads of warm tea with each mouthful (the warmth aids peristalsis). I did double check with him that high roughage diet was a good idea having previously been told to avoid high roughage for IBS-c. He said this isn’t IBS-c it’s overlap connective tissue disease as Sjögren’s has also caused issues with dryness and nerve damage but he said systemic sclerosis does very distinct damage exactly as I had described and high roughage is essential. I think the liquid Senna may also stop working but for now I have 15ml at night and use the Qufora kit in the morning and so far I’m reasonably regular for first time in ages with no burning gastritis.

I eat prunes and nibble homemade bread made from organic gluten free types of flour such as chick peas. I do also eat dark chocolate, mashed bananas, peas and other greens such as spinach as much as I can swallow with warm tea and soya milk.

I find eggs, milk and cheese make me blocked up but I can manage yoghurt with non acid soft fruit eg chopped pears and toasted almond flakes and soft kiwis okay for breakfast as long as not too cold. Dark chocolate is good too and stuff like fish fingers and finely chopped salad with yoghourt and mustard dressing are fine too. The huskiness of pulses or wheat germ makes me gag though so I avoid these. And red meat is a no no now apart from occasional mince. Otherwise lots of soups!

[tenfou in reply to Hidden]

Hi, thanks for your comprehensive reply, will pass a copy of it on to Mum, I'm sure she will find your experiences helpful. I know that she has tried irrigation but that it wasn't possible for her to manage it, and it had rather "explosive" results, so she is reluctant to give it another go. I hope you don't mind me asking, but do you have a colostomy? It would be helpful to know as then we would know whether a high fibre diet would work with a colostomy. She is due to see (or talk to) the bowel surgeon in the next month or so, but now we are in a further lockdown I'm not sure whether that is going to happen.Thanks again for your help, regards.

[Hidden in reply to tenfou]

Hi again. No I don’t have a stoma/ colostomy. I did ask the very knowledgeable surgeon but he said he wouldn’t be keen at this stage given that the last time I had abdominal surgery to have my gallbladder removed I had post op wound sepsis and severe flare up.

So I think it would be best to discuss diet and your mum’s other issues with a colorectal surgeon or a colorectal consultant - preferably one who understands systemic sclerosis. I’ve been discharged by gastroenterology now which seems absurd really.

But I’m 57 and have some query hanging over my diagnosis overlap - which so far mainly affects my GI system rather than my skin - so in a different category to your mum who probably has more advanced SSc and some age related dysmotility too.

[tenfou in reply to Hidden]

Thanks again for all the info and advice, we wish you well with all of your problems, and hopefully we will be able to report and improvement in Mum too soon, best wishes.

[Intimeslikethese]

Sending well wishes to your endeavors and your care for mom. I don't have an answer but wondered if pears, raisins, applesauce, prune juice were all added in her daily diet, if that would assist. Also, ask your doctor about Digestive Advantage probiotic gummies. All these combined work under normal circumstances for desire of a movement. Hope effective for your mom. Wishing all a happier, healthier new year!

[tenfou in reply to Intimeslikethese]

Thanks very much for your reply, will have a word with Mum and see what she thinks she can manage. Happy New Year!

[MissusTee]

A low fodmap diet might help?

[tenfou in reply to MissusTee]

Hi, thanks, we have looked at Fodmap before, but not sure if it is suitable long-term - do you have any personal experience of it? Happy New Year

[MissusTee in reply to tenfou]

I’ve been trying it due to SIBO with my scleroderma. I’m already a vegan and I know that dairy is quite inflammatory but I’m struggling to omit onions!! It’s in every vegan pie or sausage out there! I think that there will always be ‘something’ in the diet that every individual will find difficult to remove but the dietitian said that you have to be on the diet for 2 months before you see a difference.

[tenfou in reply to MissusTee]

Thanks for that, Mum loves dairy products and they are easy to eat. An additional problem for her is that she is missing fingers on both hands - she had calcinosis so badly that amputation was necessary. Anything she prepares is complicated by that so anything that is easy to eat is good - a favourite snack is ready-sliced cheese on digestive biscuit, but think both of those may cause digestion problems! I'm sure she will try the low fodmap diet again, until she feels bad and then just reaches for what is easy. Thanks for suggestions. 😊

[cowhide in reply to tenfou]

I follow a few health professionals on twitter - eg NHS consultant specialist in intestinal failure (deputy clinical lead for whole hospital trust) and he has said several times no-one should go on a low Fodmap diet without medical supervision. Nutrition is a very complex subject and not one to be dabbled with which is why I had suggested a dietitian as a starting point.

[tenfou in reply to cowhide]

Hi, thanks for response, we will try and get to see a specialist dietician as soon as possible, maybe through the bowel consultant, but we can't see him for 4 - 6 weeks yet (and of course it may be longer). But we will try the SRUK and Royal Free Helplines too. Thanks 😊

[Chakula]

I think your mother should consider taking Simprove every or most mornings in an attempt to promote a healthy gut. Start with a teaspoon rather than the recommended amount to get used to it. I don’t like taste so drink water afterwards as you should wait 10 minutes before having a hot drink. I have been getting it for about 18 months from Nivarna Healthcare.

[tenfou in reply to Chakula]

Thank you for suggesting Simprove, will investigate on Mum's behalf. Best wishes