stomach trouble with scleroderma

Hi everyone. this is my first post. I was diagnosed with limited scleroderma six months ago. I have been suffering also with terrible reflux and my omeprazole was increased to twice per day. However for the past one months i have severe constipation and have been taking laxatives that i bought from the chemist, furthermore i am feeling bloated and full all the time. Has anyone else experience this and any useful advice would be appreciated as my stomach is giving me so much problems. thanks

23 Replies

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  • Hi I was diagnosed with limited scleroderma over 6 years ago and had very few symptoms apart from a few joint pains and reflux which came in spells. However I'm now finding I need to keep up with eating plenty of fibre (fruit and veg, cereals and pulses) to keep things going. I try not to eat after 5 or 6pm and I find it helps lessen my reflux at night. Apparently digestive issues are common with Scleroderma. Incidentally this is my first post too. Take care

  • Thanks so much

  • No problem. I hope this forum helps you as much as its helped me in recent years as my symptoms become many and varied! It helps you feel you're not as alone as you thought you were :)

  • Sounds exactly like me, i eat smaller meals now, nothing spicey, no fizzy drinks. No steaks which i loved in my heart, they seem to get stuck in my oesaphagus! Chicken is just about ok if i have plenty of gravy on it and i chew it well. Nothing to eat after 6pm, otherwise i would b up all nite. I would rather go to bed hungry than b up coughing and choking n in some cases vohmiting. Case of trial and error really to c what ur body can cope with. Best wishes.

  • It seems the gut is often involved even in so called limited scleroderma, so it is something to report to your doctor. What helps to manage it may be very individual. I had the opposite problem and low fibre helped.

    Good luck with this.

  • Totally agree. All we can do is share our own experiences

  • Hi I have recently signed up to this forum and this is also my first post. I have lived with Mixed Connective Tissue Disease (overlap Scleroderma, Raynauds, Sjrogens and low thyroid function) for the last 20 years not really understanding what it was and the impact it has on life.

    Reading various reports on the forum has made me feel I am not alone in the sypmtons I experience and your message made me connect with you as I have had stomach problems and swallowing difficulties and take Lansoprozol but found it hard to realise it is all connected to the diseases as all these sypmtons come and go which makes it harder to understand how they are linked, but reading about other people's symptoms makes it easier To understand and that you are not some kind of freak!

    I hope you are getting the support you need.

  • I have had stomach problems for years, and docs have tried everything with me. I have just recently been dignosed with raynauds and got the Iloprost drip in November, but even it doesn't work for me!

    I have found that lactose free milk really helps my stomach. Again for the bowel problems try drinking aloe vera gel. I went onto it about 6 months ago and it really does make a big difference

  • Where would you get aloe vera gel

  • Holland & Barrett sell it - they do a lovely Cranberry flavour!

    hollandandbarrett.com/shop/...

  • Common problem with the indigestion..heartburn is so annoying...I get it every day even after taking the Omeprazole ...just have to watch what you eat I think and milk gives me a painful tummy ...I just use semi skimmed but noticed after I have cereal I get sharp pains in tum. I think it is all part and parcel of scleroderma. I also get the horrible sensation of trying to swallow over a rock in my oesophagus which is also painful and very burny! So I have lost a bit of weight through having to leave my meal after just a few mouthfuls.

    Good luck and better health going forward to you pet and know that you are not alone in this illness.

  • Hello there, I was diagnosed with Limited Scleroderma 2005, and have had all sorts of problems, but by far the worst is the issues with my entire digestive system, this seems to be a common problem with Scleroderma patients and it varies dramatically from person to person. I have had scans and tried all sorts of medication, none of which I find have helped. The only advice I can give is to chew your food well, and eat little and often so as not to overload your stomach. I know it's miserable, but try and stay positive.

  • Hi Aubmtz

    Sorry to hear you are feeling so uncomfortable. I too was having similar problems - I always used to say I could feel an alligator crawling up inside me when it was time to lie down and go to sleep. My consultant advised that I don't eat anything after 7 pm - difficult I know when social occasions arise. But I try to stick to it and it really does help. Also you can get a reflux pillow. Quite expensive and you'd have to do an internet search. However I found one made of good quality firm foam - it's like a big long wedge, long so that it tapers to nothing well down the bed so that you don't crick your back. I just place one pillow on top of it for my head - it has helped greatly I also like to drink fizzy soda water at bedtime - I don't know if it really helps but I feel like it sends things down in the right direction. Last summer we were going to No 1 grandson's wedding and I worried about how to swan into a posh hotel with that great thing under my arm. It wouldn't do my street cred any good. So we hid it in a suit carrier thing and put it away in the wardrobe during the daytime.

  • Me again = I forgot to say, I too have scleroderma and the problem is it can affect your oesophagus and that's what's is causing the reflux - food is not being 'pulsed' along efficiently.

  • Hello Aubmtz, I too was diagnosed about the same time as you. I have Omeprazole too and I have a lot of gut and bowel problems and reflux. I do have divatcular disease also but I think many of my latter issues are in connection with LSS and symptoms are very different. Rheumatologist said it probably is todo LSS. Bloating, bowel very often not feeling empty, nauseous, etc.... Everyone is different but I try to to keep to a gluten free diet as much as possible. Also now have goats milk instead of cows. It hasn't cured it but it seems to help and also helps the fibromyalgia. Hope this might be of help to you. At least we all know there are many feeling as uncomfortable as ourselves. Wishing us all future better health.

  • Hello Aubmtz I have also had the same problems with terrible reflux. God it hurts when you get a good bout of it. I cannot really think what causes it to happen. I found eating late didn't help. I am on omeprazole one a day and two a day if I get a bad attack. I had a bad stomach so reduced back to one tablet.

    I also take pain killers that perhaps upsets my stomach.

    I hope you get some relief soon. Perhaps if you reduce the tablet to one for a few days and see if that helps. it helped me.

  • Hi i have all of the above and it does take some time getting used to it all.I have the opposite loo prblems and as soon as i eat i need to empty my bowel this happens maybe 4 ,5 or sometimes 6 times a day. Omeprazole gives me heartburn too .I was reading last nite about home remedies to help heartburn as mine has been so severe past few days even a cup of tea hurt so i read that bicarbonate of soda could help i made my self a lovely glass of it disolved in water downed it an felt as if i was goin to be sick but to my surprise it worked but it said not to b taking it regular as its high in salt but i got to sleep.I also take gaviscon/peptac prescribed by doctor last thing at nite just after brushing teeth it acts like a plug and stops stomach acid apparently once the acid meets with the gaviscon it solidifies and help when u lay down to sleep also raising ur bed at nite a little so ur head is higher than ur stomach..it is a nightmare but i have learnt not to panic about the whole thing .This site is fanastic and iv learnt so much reading other peoples stories and feeling ur not alone has been the best bit for me having somewher to go to talk to people with scleroderma..hope u get peace of heart and find what works for u .

  • Hi, I also have had those symptoms for over 25 years. Best see a gastroenterologist to check your esophagus and do a colonoscopy. I take Nexium for heart burn twice daily and keep tums on hand. Try to eat 6 small meals a day, never overeat as it is quite painful. Best thing for constipation is drinking miralax, it is a powder you can mix with non-carbonated liquid. I use orange juice each day. You have to drink it everyday to stay regular. Keep laxative on hand in case you miss taking the miralax. The drink helps the slow motility in your intestines. I have my esophagus dilated from my gastroenterologist every few years to help with swallowing. Hope this helps you.

  • Someone pointed me to something called fodmap, google fodmap BS and you will see it. PPI doesn't make me constipated, quite the reverse. I am also anaemic and so on iron pills, they bung me up. I have modified my diet to avoid stuff I can't digest, meat and soya for instance. Lots of fruit and veg help. The list is worth looking at, anything is frankly. I avoid most processed stuff, certainly sugar and drink lots of water!

  • That's fodmap ibs , stupid autocorrect

  • Hello, i too suffer bad reflux with scleroderma, and alot of bowel problems, i use applecider vinigar with water every day, also i use probioctics everyday and lastly, i drink green tea everyday, avoid all milk, bananas, cucumbers, zercunnis, sorri my spelling is bad. But i hope this helps.

  • Hi,

    As it's possible to tell from the many responses, reflux is one of the most common problems with our condition.

    I have reflux and also gastroparesis (slow digestive tract including stomach) but after my digestion was a mess from omeprazole and then esomeprazole, I came off both and this is how I avoid reflux altogether:

    1) I bought a wedge of foam to elavate the head end of the mattress (from the hip - it's not effective to just use more pillows)

    2) I sleep on my right (stomach is positioned to the left of the torso) never on my stomach (worst position!)

    3) don't eat fats in your evening meal - they take way longer to digest. Switch lunch and dinner so you eat a larger meal at lunch and a light small meal before bed (aim as early before as possible). So lean meat and salad or veg.

    3b) eat at the table and remain upright standing or sat at the table after eating to encourage digestion assisted by gravity. If you slump on the sofa it's no good

    4) glass of water by your bed if you do wake up with acid you can wash it down.

    5) I use milk of magnesia before bed (that'll gently assist the constipation, too)

    I basically only get reflux if I deviate from these - it can feel a bit like a super restrictive nightmare at first but it becomes habit and no longer a hassle :)

  • I have also been suffering with acid reflux for many years now. I started with omeprazole every day. However, the doctor recommended to try and cut back due to the possibility of kidney damage. Ironically, there was a news item today on the radio in California where I live about all of the acid reflux medication. Have been able to cut back to three times per week. I hope all can get well soon and maybe the medical profession find a safer way to correct this. As for my Raynaud's, the gingko, garlic and butcher's broom herbal pills alleviate 25-50% of the pain and reactions. I take them in the morning around 5:30 and again around 4:00 in the afternoon.

    Blessings to all.

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