looking for some insight - I’ve been diagnosed nearly 2 years.
recently I have been having some minor gut issues and wondered if this was the beginning of SSC related gut problems and if there is anything I can do to prevent worse progression.
I’ve found my appetite has decreased; occasional nausea; increased reflux (especially at night); bloating; increased wind in form of burping and increase in stomach noises.
does this reflect the start of GI issues similar to anyone else? Any advice welcome?
Thanks so much
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ruablue
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Yes those are symptoms I was experiencing before diagnosis but everyone's scleroderma journey is different. I very much wish I had had an earlier consultation with an understanding gastroenterologist and would encourage you to seek one ASAP. In the meantime it's helpful to keep a diary of what you're eating, stress and activity levels etc alongside your symptoms to see what connections there might be. Takes time but it's worth it.
Thank you so much - I suspected as much but there’s a little piece of me that hoped perhaps it was just a momentary blip! *Sigh* another symptom to add to the list ha ha! I’m so grateful for your insight and advice - will speak to doc to get gastro referral asap. Thank you again - really appreciate your reply 😊
Yes I’m afraid it might be early stage GI involvement but the severity of this is extremely variable. I have severe end to end but other than Raynaud’s, some early inflammatory arthritis and Sjögren’s, this was how my SSc started. And I learned from the Royal Free Prof last year that this is very much in keeping with my rare SSc antibody so not everyone will have such extensive GI involvement as mine.
The way I’d have approached it initially would be to try and work out your own trigger foods and avoid these. For example mine are all fibrous food, garlic and wheat plus high fat food and drink and all red meat so I can’t eat any of these food groups and am increasingly depending on a liquid diet including Ensure Plus which I’m prescribed by my dietician. It makes me feel more sick if I have it cold but in decaf coffee and tea as milk substitute it’s actually quite pleasant! I nibble plain baked crisps and rice cakes with marmite and smooth 100% pure peanut butter and my calorie and vitamin intake is boosted via a banana milkshake with peanut powder and semi skimmed milk which I whizz up for my breakfast daily. But each of us have to find our own way because all our gut biomes are all so different.
I take 1 domperidone daily first thing , Esomeprazole, Famotidine, Rafixamin (SIBO) and am quite laxative (powerful ones) and irrigation dependent now. But again my severe bowel problems will probably not affect most people with SSc. Which is good because there are no treatments specifically for the SSc GI related conditions I’ve been tested for and diagnosed with Gastroparesis, gastritis, reflux, hiatus hernia etc.
But I’m fortunate not to have any lung, cardiac or renal involvement to date and not much skin involvement either - although I do have some cutaneous so not Sine. I think taking Mycophenolate for +4 years has really helped prevent these progressing for me and same with monthly Iloprost infusions for my secondary Raynaud’s. I hope this is helpful 😊
Old Ted, you are such a fountain of knowledge- your posts are so incredibly helpful. I like the idea of finding trigger foods so will be mindful of that. I sadly do have lung involvement so this is simply another little hurdle to get over. I really am so grateful for your detailed response. In a weird way, it’s comforting to know there are trail blazers like you giving such helpful insight - THANK YOU for being so generous with your story. I truly do appreciate it. 😊
Yes, mine started with what seemed to be sudden severe reflux and difficulty swallowing. Endoscopies showed no malignancy, which was my GP’s immediate concern and I took Omeprazole. I lost a great deal of weight. This started nearly 11yrs ago.
Eventually, I saw a rheumatologist, for a different reason, and Secondary Raynaud’s with nailfold capillaroscopies showing abnormalities. At the time, I had a positive ANA and scleroderma antibodies. It was wait and see, apart from treating the Raynaud’s, for which I now have Iloprost monthly.
I started to have severe constipation, which was treated with bowel irritation. I now have diarrhoea constantly. It’s hard to keep weight on and I’m already underweight. Rheumatology are considering Rituximab on top of Mycophenolate and are suspicious that I have developed dermatomyositis as well as systemic sclerosis. I’m due to have a colonoscopy with biopsies to see if the scleroderma has caused microscopic colitis.
I take Rifaximin for a week every month for SIBO. My diet is bland and soft due to the continued swallowing problems. I take nutritional supplements.
In all, it’s taken nearly 11yrs to get here. The connection between scleroderma and gut problems is clear, although everyone has different symptoms.
Thank you so much Lupiknits! I really am grateful for you sharing this insight. It sounds like it’s been a tough 11 years! But know that your reply today has really helped me. I hope you are managing to take good care of yourself. This disease can be a cruel taskmaster at times. Thanks again for responding to an anxious fellow battler 😊
Thank you too! I’m afraid I made it sound like 11 very hard years. It hasn’t been what I’d have chosen but it’s not too bad. The important thing is that you seek some help in order to catch anything going on in the early stages. In hindsight I should have paid more attention; but there again I’m perhaps unfortunate in that the symptoms have increased. Best wishes x
Hi Ruablue,As DizzyLiz said each individual case is different.
You need to talk to your specialist consultant in Systemic Sclerosis. For me swallowing started to be an issue. I was also very aneamic. The latter turned out to be a clump of cells bleeding in my stomach. I had no other symptoms. I had to have a small operation to laser the area.
Please don't delay with any issues you have. Start to make a diary day by day so you don't forget anything when you see your Consultant. Even the smallest of issues.
Thank you so much!! I have been seeking a gastro referral so as soon as I have an appointment confirmed I can hopefully begin to manage these new symptoms. This community is so wonderful! I would be lost without you all 😊
Hi Ruablue, as everyone says we all have our own journey, I have been diagnosed with systemic scelerderma, lupus and myositis for nearly five years now. I felt I was doing ok, until I had my gallbladder out
Then my stomach seem to protest, I often felt nauseous, but it comes and goes, like Old Ted said, a fibrous diet seems to aggravate my guts, as does spicy food, sometimes coffee and tea, so a food diary is a great idea. I burp and pass wind some days. Live yoghurt seems to be good, not probiotic or kefir.
According to my consultant I am getting bloated, 6 months on, I agree with her.
Thank you so much for your reply. Interesting point re probiotics and kefir - eating a lot of that so will remove from meals to see if that makes a difference when I’m keeping my food diary - appreciate the good luck wishes -
I had reflux and swallowing problems BUT your symptoms sound more like SIBO which is common in scleroderma.
I always thought my spells of changed stools, nausea, bloating, LOTS of burping and worse reflux were all just part of the reflux, but I had a glucose hydrogen breath test which confirmed SIBO. Treated with intermittent antibiotics (currently rifaximin) and I now feel so much better and can tell when it is coming back and just get another prescription.
I already had some kombucha and kefir in my diet, and to be quite honest it didn't seem to help at all.
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