Is anybody troubled by digestive problems that could be linked to their Scleroderma. I've been suffering with the digestive problems, heartburn and difficulty swallowing for a few months and wondered if it could by linked. I've tried all the usual remedies to no avail.
Thanks
Ann
Yes, I have several problems related to my condition. I see a gastroenterologist every 3 months. I have so many tests, too. If you don't already have one, the sooner you do, the better you can manage your condition. They can be so helpful!
Hi thank you for your reply, all though it doesn't help you it's good to know there are others with the same condition, looking into a gastroenterologist
Yes, I am battling constant nighttime reflux. It is so aggravating. I am now on 40 mgs of omeprazole in the AM and PM. My consultant has said it can be one of the more challenging things to treat and control.
Short of eating nothing and sleeping standing up, I am running out of ideas.
Sometimes I get difficulty swallowing certain foods or feeling like they are stuck in my gullet. I have been trying to eat easy to digest foods. Vegetables are mostly cooked, very little meat, smoothies, etc.
It can really get me down because I am a foodie. I hope you find relief soon. Also, I think my reflux gets worse when I am having a flare up, too. X
Thank you so much for your reply it was really helpful and like you I feel I do not want to eat knowing whats likely to happen, I take 40 mgs of Omeprazole in the AM but nothing PM the way you have written you take 40 AM and 40 PM am I correct.
Like you trying to sleep is terrible sometimes I am in tears wishing the pain to go away.
Do you find smoothies help? can you recommend some nice ones, like you I am a real foodie, I look at some food and drool sometimes I relapse but of course wish to hell I hadnt .
Once again thank you for your really helpful reply, let's keep ours fingers crossed that maybe we will get relief one day x
Hi Abby just a quick comment. I ended up splitting my omparzole dose to at either end of the day having trialled morning only. 8am 8pm . Splitting it really helped me though its not perfect. . Still try not to eat after 7pm although chocolate seems OK! Like others some says are better than others. I realise I'm using less spice in my cooking. Funny how we slowly change our habits over time.
Good luck.
Hi Fluffy2 I am now trying the idea of splitting the Omeprazole keeping my fingers crossed it may help, also not eating after 7pm, with regard to adding any spice I stopped that quite a while ago as I feel pain as soon as I eat anything with any spice heat of any sort. Love the fact you find chocolate is ok, well we have to have something nice as everything else has had to change x
Hi Abby, as the other responses say, these symptoms are common with SSc (see SRUK website on gastrointestinal involvement info) and you need to see a specialist to help assess and provide treatment; have you raised it with your rheumatologist? I wouldn’t delay, wishing you well - Ellie
Hi Ellie thank you for your reply as you say there are so many symptoms to SSc even down to loosing all your teeth and having to have a full set of implants, next visit to rheumatologist will make sure it is too of list - Ann
Hi there, sorry to say I can’t offer you much advice either. Its a really common problem. Been seeing gastroenterologist for some years, had several scans and take medication which can be hard to swallow at times and often gets stuck, nothing works well all the time. Most days don’t feel well at all, I take each day as it comes. Think my whole gastric tract is shot. I wish you well and hope you find something that works for you .
Hi, thank you for your reply as you say even medications can get stuck making you feel like you are trying to swallow a brick, like you the good days are few and far between, maybe one day we will be well. Once again thank you.
I had problems swallowing medications and there are solutions:
1. There are YouTube videos on different methods of swallowing pills (I didn't find them useful, but some people do)
2. You can buy a "goo" for swallowing pills (I didn't fancy it, but if you have food intolerances such as milk, might be useful for you.)
3. I use extra thick Greek style yoghurt - put some on a spoon and embed the pills in it and swallow the lot. It helps lubricate large pills and it gives some momentum to small light pills.
I was occasionally having trouble swallowing food, but for the last few months that has been better.
I also have sluggish peristalsis and some days my food pooled in my stomach, didn't move on, fermented, I had horrendous gas and burping and four or five hours later I'd finally throw up and feel a lot better. There was no rhyme or reason to it - it wasn't related to what I was eating, it just happened when it felt like it. Not food poisoning as my other half ate the same meal and was fine.
Domperidone fixed the peristalsis.
Wow and I thought I was bad but you really do seem to be suffering unbearably, thank you for your help and support, good luck
Until I was medicated it was horrible, but the medication is working. I'm not throwing up any more. I do need to be careful not to eat a large meal in the evening, or later than about 6:30pm, but providing I do that, no vomiting.
I'm like you in respect to eating certain foods and times I eat, sometimes I just have Smoothies at least they make life a lot easier. Good luck x
Hi, I also have problems eating. I have a hiatus hernia caused acid reflux & reduced motility. Eating is so painful & often results in food getting lodged & vomiting. I usually see my gastroenterologist every 6 month but due to Covid, it’s been postponed.
I take Emozul 40 mg morning & evening, metoclopramide (help with sickness) ranitidine & Gaviscon. I sleep with 2 pillows & an anti reflux pillow which keeps me propped up in bed & I find this really helps. I’m still learning which foods I can tolerate too. Some are worse than others.
Hope you get help soon. 😊 x
Thank you so much for your help, unfortunately due to an operation on my lower gullet I am now unable to be sick so the feeling of wanting to be is horrendous because all I do is retch. Have tried various pillows like you it is a matter of trial and error and testing anything you can get your hands on. Take care
I’m sorry to hear that. Hopefully you find something eases your pain quickly.
Take care 😊 x
Thank you, take care stay safe x
Yes, sadly I think it probably comes to us all. I've suffered with reflux for a long time and I now have trouble with some foods getting stuck. I now try to eat foods that are moist and avoid dry foods like bread fish chicken bacon. Drinks lots of water as you eat and chew things very very well, it will help. You should also get some PPIs from your doctor. Ax
Hi there, I've suffered like you for absolutely ages and find bread, chicken and anything that needs a lot of chewing or is somewhat dry very hard to digest so tend to try to omit it and have always got a bottle of water by me. Have had a major operation to help my food reach my stomach but unfortunately the gullet has been stretched twice and cannot be stretched any more so have got to put up with it. Thank you for replying, take care, stay safe.
Yes I too am the same as you. it is linked to Scleroderma. I also get the problems with my bowels and bladder. Very sharp stabbing pains in my lower stomach and then have to rush to find a toilet. Because I have the runs and starting vomiting until there is nothing left inside me. Are you having these problems. It makes you feel so wash out and ill for awhile.
I am seeing a gastroenterologist, next week for the first time. It has taken me ages to get to see one. I have noticed with my mouth getting smaller and the throat I have to really slow down eating. I cut my food into very small portions or I would choke. Everyone is then waiting for me to finish my food.
I have noticed that nothing really works for me. I really watch what tablets I mix together because some say things cannot be taken with stomach medicines. take care.
Hi there, thank you for your reply, like you I get the same problems with the pain and the toilet in fact when I know I am going anywhere I make sure I don't have anything in my stomach where there are toilets just in case. My mouth has definitely got smaller especially since having to have all my teeth out thanks to Scleroderma and now have a full set of implants and sometimes it makes eating anything really difficult, like you everything is cut up small or I have smoothies.
Thank you once again take care stay safe.
I have had digestive issues with gerd for over 25 years and have tried all the medications with no relief. I have 8 cm of Barretts due to all the acid sloshing up into my esophagus. I have silent aspiration also, which has affected my lungs. Because the medications did not help, I had a toupet fundoplication, which helped some, but became loose after a few years. Recently I had the fundoplication converted to a roux-en y gastric bypass. Finally...relief from the acid sloshing.
Hi birdieca, you certainly have had a lot going on over your life, my problems are nothing compared to yours, thank you for your interesting reply take care x
Just keep searching for solutions! There is always something to make you feel better out there. And that is your right.
Thank you, promise to keep looking and reading x
Yes I have now I got a feeding tube because of the many aspraite pneumonia I lost count of how many I've had feeding tube isn't that bad to have I've got the belly button one now I used to have the peg I didn't like that one because tube was attached to me I wore legging and jeans all the time so I cud put it down one side my leg trying to hide it but I attached the the tube on my feeding tube wen I have my meds and drinks than I take it of wen I finished no body nos I've feeding tube coz it is really small
I have scleroderma and raynauds, and have recently been diagnosed with acid reflux. I was prescribed Omeprazole 40mg to start (by my consultant) and then my GP reduced to 20mg (due to the side effects he said). At night I take Peptac, which initially stopped me from waking up in the night coughing and choking. However, now the Peptac has stopped working and seems to make me feel worse. When I get up in the morning I cough a great deal, eventually it subsides. I try and eat slowly and make sure I chew my food thoroughly. Some nights I get a good nights sleep and some nights I wake up coughing and can cough for nearly 2 hours. Next day I feel drained with the lack of sleep. I don't find the Omeprazole particularly effective and now the Peptac doesn't help ether. I was due an appointment with the Rheumatologist in July, but due to COVID they are only seeing urgent cases. The only thing that seems to stop me coughing is Potters lozenges!
Hi Jane, thank you for your reply like you I take Omeprazole but I'm still on 40mg plus everything else, I'm sure if you shook me I would rattle (ah well). I've tried Peptac which did not help me I'm now trying Gaviscon double strength sometimes like you good night and then sleepless. With regard to eating, everything I do eat is almost mush or I would rather just have either soup or smoothie's, also like you the coughing drives me mad and seems to start for no apparent reason and goes on for so long. My Rheumatologist is also only seeing urgent cases so we just have to hold our breath. Good luck and thank you.
Hi Ann
Yes I’ve suffered with digestive tract problems due to my Scleroderma for a long time now. February this year I became very poorly due to becoming malnourished as I wasn’t able to keep anything down and only eat very small amounts, food felt like it was getting stuck. It came to a point where I couldn’t even swallow water. I had a manometry test performed it showed I had Dysmotility of my oesophagus, I’ve had to have a gastronomy peg as I’m un able to eat now. Prior to this happening I had tried all the things you could try and help yourself at home by eating small amounts, cutting out acidic foods, no fizzy drinks. Raising pillows in bed. Taken the maximum dose of anti acids esomeprazole 80mg, 40mg in the morning & 40mg of a evening along with ranitidine 300mg also peptac. I still suffer from severe acid reflux even with the peg, my gastro consultant has recently started me on a medicine called sucralfate which has helped massively. I’m only sick a couple of times a week now.
It’s important that you tell your rheumatology you’re symptoms, & getting a referral to a Gastroenterologists so they can offer more help & order tests you made need to investigate things further.
Take Care
Cara x
Hi Cara, thank you so much for your really interesting response, like you I have tried every remedy ie raising bed and pillows various anti acids and also small amounts of food plus smoothies. I have had a major operation by having my chest cut open and it was found that my oesophagus was twisted and the flap at the base which opens and closes to allow food into the stomach was made to stay permanently open, it actually worked for a while but since then I have had the oesophagus stretched twice and have been told it cannot be done again because it could tear. Unfortunately my Gastroenterologist has retired so I am now looking for a new one and of course not the best time with all the Covid. But we will all keep on hoping for something that works.
Thanks again, take care and stay safe
Ann x
Thats really helpful, sometimes it is good to know that you are not alone with your suffering and other people have similar issues. Yesterday I didn't cough much during the day, today I couldn't stop coughing. Doesn't make sense at times. In January, I did have a camera put up my nostril and down my throat, and everything was fine. The ear, noes and throat specialist suggested I sip small quantities of water throughout the day - which does help.
Hi Jane, Yes it does help to talk to people that are suffering like us you don't feel so alone. I must admit the coughing does get me down sometimes especially when I have a particularly bad day, sometimes it makes me wretch and that really hurts. I am trying to find a new Gastroenterologist but as I have said previously with Covid it is rather difficult at the moment.
Take care
Ann x
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