Stomach Issues

I have scleroderma, with additional problems one of which is stomach/bowel problems, which is having a significant impact upon my life, not wanting to go out etc. I have been told by a few Drs that I have bacterial over growth. I have recently been seen by a gastro specialist and have had a breath test and colonoscopy. the test from colonoscopy came back normal and breath test confirmed I dont have bacterial over growth. I am now wondering what the problem may be and wonder if I am lactose intolerant, so am trying soya milk and being careful with dairy products. Has anyone experienced the same problems and can give me any advice or tips. Thanking you in advance.

23 Replies

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  • Hi SandraM, the GP should be able to do a blood test for lactose intolerance? Or send you to an allergy specialist. Not sure if this helps.

  • Hello, Thank you for your comments. I'm due to see the gastro specialist in a couple of weeks so will ask him to do the test.

  • I had bacteial overgrowth - ended up in hospital. The cause was Laprozole taken 3 times daily.

    They changed my medication to Omeprazole once daily and I have been fine since

  • Hello, I'm not on that medication, so not sure if it is due to other medication. Thank you for your comment though.

  • You don't really say how your symptoms present themselves, are you bringing food back up, do you have bowel problems (both constipation and diarrhoea),is there pain at all???

  • Hello, I have bowel problems - diarrhoea. I dont suffer any pain with it though. My problem is not wanting to go out for fear of needing the toilet, or if I do go out finding where the toilets are etc,

  • I have been through all you are saying years ago. It is none of your supositions. It all comes from your scleroderma when it affects the digestive system and is the commonest complication of scleroderma. It is nasty I agree. See your rheumatologist. I have esomeprazol and domperidon because my gusts are very slow and have trouble with acidity in my stomach which gives me reflux (the acidity goes to my throat) which makes me cough. Because the guts are very slow it affects passing motions and I have something to soften my motion to make it easier and senna to make me go to the toilet. I am very constipated but some people have the opposite and have diarrhea. I have panti-liners on my nickers and some layers of toilet paper. It makes things easier, you just throw out the toilet paper in the toilet and replace it. It allows you to go out. Good luck.

  • Hi Zenabb, thank you for your comments. Its sounds like I am the opposite to you. I am finding I'm having to wear pany liners on certain occassions but I do get embarrased at times, especially at work. I have seen my Rheumy and have been prescribed anti biotics but they are only for 2 weeks which is fine for a short time but then it returns. Like alot of us on here though we all just get on with it, dont we. Best wishes.

  • Hello, the bowel problems are probably part of scleroderma, I have the opposite to Zenabb, my food shoots through my system so fast. I used to go about 5 or 6 times a day, just about manageable, but this has increased to 8 or 9 times a day. I have been given loperamide which I take in the morning if I'm going out later in the day, sometimes I need 2 doses but it does stop the problem for that day. I also wear pantyliners and layers of toilet paper, as I have some leakage after passing stools. What a state to get into, I sometimes think this part is worse that the circulation problems.

  • Hi Yorky, Sounds like we are very similar. As I said to Zenabb I do have anti biotics but the relieve of the symptoms doesn't last long. I do take Immodium syrup often and have also been to carrying it around with me. I have to agree with you I do find it worse than the circulatory problems.

  • I agree it may be worse

  • I agree with you there,Yorky

  • Hi SandraM I have recently had exactly the same word for word as you describe. Test done, all negative but then the stomach/bowel problems started up far worse for 2 months in which I lost a lot of weight and found myself strugglling to keep going. I rang up to chase up a long overdue appointment with my rhumey but that was weeks away. Eventully I rang the doc and broke down in tears as the situation was hard to cope with. I felt and looked really ill everyone at home and work was worried. I was given a weeks worth of phosphate codine, side effect gives you constiptation which helped until I saw my rhumey. she straight away agreed with me that the symptoms sounded like bactieral overgrowth and gave me antibiotics, Augmentin, 375mg, 2 three times a day. within 24 hours i noticed a considerable difference with my stomach & bowel started to settle after a few days. At the end of the 2 week course I felt like my old self again. Since then I found out a lot of the tests aren't conclusive, expecially the lactose test. Hope this helps. I know what you are going through and how miserable it is to cope with but help can be given. you might just have to force the issue.

    Take care, Newton

  • Hi, thank you for your comments Its nice to see that I'm not alone with this problem. After your 2 week course did your symptoms reoccur as mine seem to. the dr did say it might mean that I take them regularly 2 weeks on 2 weeks off etc. Not so sure I want to do that. I'll see what the Gastro specialist has to say in a couple of weeks. Best wishes.

  • Hi Sandra, I was fine for the first couple of weeks after I had finished the

    antibiotics but i am now getting some stomach fermentation/burping late afternoon and especially during the evening, very eggy. Bowel problem still fine which was my main concern but wondering if in time this will also reocurr. Your Doc. seems much more up to date then mine. When I first went to the Dr. about this they hadn't come across Scleroderma before so wouldn't do anything until I had seen my rhumy. I see the Gastro guy tomorrow so will tell him my concerns about it reocurring. I don't want to go through that again, lost 8lb in weight which I can ill afford to do. When you read up about this problem they do say that you should go back on the tablets after a couple of weeks then hopefully you might be ok, if not you may have to go on them like you have been advised or a lower dose continuously.

    I don't feel so alone now I have heard from you. best wishes

  • coffee might make things worse .They say make sure you drink pleanty of water to keep things moving and eat lots of fruit and veg .Mind you i do this sometimes just as bad

  • Hi, I dont drink coffee, only tea. I have also made a concious effort of drinking more water. I'm trying Soya milk now to see if that helps.

  • I have unbeknown as Scleroderma been suffering with bowel problems since a very young age. Constipation causing pain in my left side, worse than any child birth pains.I've never been offered treatment for it other than a laxative when it was first noted. I have had to deal with it myself with painkillers and a very hot , hotwater bottle. Since diagnosis of Scleroderma about 10 years ago, having reached my oesophagus, I realise now it's the same situation but lower down. I now visualise it as a traffic jam of food, and if I eat too much in one go it can't get through and starts a back build-up which in turn traps air , which causes the pain. This over the years in my home has become known as my 'burpy back' as the only thing that eases it is lot's of burpnig eventually culminating in one great big one that I can feel rumbling right through my digestive system. Basically since having to chew my food to a pulp to allow it to get down into my stomach, and eating a little and often, I am less toubled by these symtoms.It is something you have to learn to deal with as each new symptom presents itself. It wont go away, no drugs work, or if they help one thing they then cause other problems. Much better to watch what you eat (not necessarily loads of fruit & veg.) try not to have too much caffeine or dairy, but a little of what you really fancy is what your body is needing! Best of luck! x

  • Hi SandraMarie. Thank you for your comments. I am begining to look at it from your point of view, some drugs may help but not fully. It is more about what you eat etc so yes I am definatley looking at that more closely. Best wishes

  • Hi SandraMarie, I dont have Scleroderma but I do have vasculitis and have exactly the same problems, I already see Immunologist and Rhuemy and now I have gastro consultant too. They have never got to the bottom (sorry) of it and I have had three cameras, one top, bottom and a wireless capsule you swallow and a computer records its progress, breath test, radioactive bile scan etc. The only thing that has worked for me is Loperamide, for me taking 2mg every other day is enough to keep things working reasonably normally, if I take it every day I get too bunged up, I have now been taking this for nearly two years like this and other than when my vasculitis flares and I may need it every day then it works a treat. Hope this helps you. They found gastritis and a hernia but nothing to explain my constant trots Karen x

  • I have both issues, I go from Constipated to Diarrhea and back. If I eat to much Veg, then I get horrible pains and abdominal cramping as well as Diarrhea. It is annoying as I am trying to lose weight and all the normal things you can eat make me very ill. I take a stool softner once I notice my stool getting hard and if I catch it soon enough it usually can correct it. The diarrhea I take a teaspoon of nutmeg with warm water and this helps. I try to avoid any laxatives or things like Imodium as they tend to over react in my system, so if I take a laxitive I have diarrhea for a week and vice versa if I take Imodium. It is the hardest thing to cope with in my opinion, I can wear gloves and use all sorts of warmers to help my hands and feet. But if you can't get two feet from the loo then you are pretty much house bound. I dread if I have to take any long trips as I know this will be a nightmare of services and such to try to go to the bathroom along the way. I try to make sure I drink plenty of water on a day at least two large cups on top of whatever liquid I have had and this seems to keep me regular. I hope you find some relief soon.

  • I realise that this posting was in November but thought I would comment anyway. Over 75% of people with scleroderma have this problem. It is embarrassing and a real nuisance. The Raynaud's & Scleroderma Association are carrying out research with specialists into this problem and have useful literature which includes the results of a survey carried out with people's comments on how they cope etc. Visit scleroderma.org.uk or ring 01270 872776 to speak to someone who has this problem.

  • hi all, I have suffered with burping for quite a while and was on omeprazole 20 mg daily. however in November last year the burping became worse and I was doubled and then doubled again ended up on 80 mg daily. I then got severe cramps and head and back ache, my gp said to stop the omeprazole and have domperidone 3 times a day before meals but if I had problems to start the omeprazole again.i couldn't manage without the omeprazole so went back on to 20 mg twice a day. I then started with a very loose stool and frequency plus abdo pain so the domperidone was stopped ,then I didn't go to the loo properly for about 5 days followed by 2 days of frequency and soft stool. I went 8 times yesterday, now I can hardly eat anything without chronic bloating heartburn and my tum feels as though it is burning after food, I also get a sharp pain in my right breast, its so uncomfortable and embarrassing, does this sound like bacterial overgrowth???

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