Anti social aspects of scleroderma

I realise that compared with the problems that so many of you have to deal with this really is insignificant but lately i am finding some of the aspects of gut involvement really demoralising. I am incontinent many times each day and have the most uncontrollable wind, then at the other end i always feel i have bad breath despite meticulous oral hygiene- not sure if that comes from the gum disease or stomach. I am sure it cant be pleasant being near me and I am now less able to just sort myself out and keep positive.

Does anyone have any tips on how to control some of these unpleasant symptoms?

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  • I had this problem for about seven years getting worse and worse. I alternated between food building up in my stomach till I was sick and spending all day and night in and out of the loo 15//20 times a day. I was totally exhausted and lost loads of weight.

    I finally had an ileostomy in dec and so far it's changed my life. I can go out to the theatre which I have really missed and feel I am more in control. It is a very big step but for me it's been worth it as the scleroderma has completely wrecked my stomach muscles.

    I know how bad it is not to be in control of your bowel. Everywhere I went depended on if they had a toilet!!!

  • You are probably being very hard on yourself. Are you eating the sort of diet to produce the wind? That may help the bad breath and wind. Get advice from dentist, dental nurse too. It is not nice to feel like this but take one step at a time trying to overcome the feeling.

  • Hi I have had problems with bowel incontinence but usually it is as a result of diet and only occurs spasmodically . However it is so unpleasant and you have my sympathy. It might help to seek advise from your local Continence Advisory Service. I think if you get this area sorted your other problems may improve.

  • Hell Blueberry, You need to get these symptoms investigated to find the reason for them. Something is going on with your digestive system that may be simple to resolved.

    Constipation is common in RSA patients but with my limited knowledge I know at times people can appear to be having incontinence when they are really very constipated with overflow. This can also make one feel like passing urine frequently and sometimes, incontinent of urine. Having wind sounds like there is something needing attention in the gut area. Bad breath can also be caused by severe constipation which can also cause vomiting of faecal matter or it could just be your tummy is sore. (Gastritis)

    RSA patients do suffer with teeth decay, gum and bone erosion and experience bad breath so frequent visits to the dentist and oral hygienist is necessary. The oral hygienist is very expensive but I try flossing as much as possible as I am experiencing a lot of dental problems.

    We need to take care of our whole being as every aspect of our daily living and life is affected by RSA and related conditions. You must go to see your doctor soon so you can get some answers and hopefully set your mind at ease. Keep in touch to let the RSA family know how you get on.

    Good luck!

    Graygirl1

  • You really should be getting expert help for these problems. You can't manage them on your own. Your rheumatologist can refer you to a gastroenterologist to help sort you out. Don't suffer in silence because it just builds up.

    AHM

  • Hi Blueberry,

    Along with many others I know exactly how you feel and I do wish I could give you the magic answer but if I could do that it would mean I could employ it for myself. I went to the Colorectal surgeon a couple of years ago asking for an Ileostomy but he declined saying that he would rather give me an SNS. SNS is a Sacral Nerve Stimulator - a bit like a Heart Pacemaker. Battery pack on my hip and electrodes going down to the Sacrum I think. Does it work?? Not really that well but I have to admit that I don't have many sudden accidents any more and I can go out and feel fairly confident I will be OK. Went to the theatre last night and as usual I am fine while I am seated but as soon as I stand up I need to head straight for the loo. I would never go to an event in a Park where the loos are way over the other side, but shopping malls and supermarkets are OK because they have facilities. Now I have a mobility scooter as well and so trips out on that are OK because I sit on it. Previously I couldn't risk walking out more than about 200 or 300 metres.

    There are other problems with the gut we have to be aware of too. Bacterial Overgrowth causes discomfort and diarrhoea I believe but I seem to have avoided that so far. Maybe it could be the source of your halitosis. Iwonder if my daily yoghurt helps. I go to the dentist regularly every 6 months for a check because of the havoc caused in our mouths. I have had bouts of vomiting and gastritis but since I was given Motilium (Domperidone) a few years ago those things have stopped. There is a warning out now about Motilium causing Heart problems but my GP says since there are no changes in my heart she is happy to keep prescribing it. I had an ECG on 25 June which showed no changes and I go to the hospital on 29th this month for an Echocardiogram and Cardiologist consult so while they are watching me I should be OK. I couldn't bear to go back to the sudden vomiting.

    The other thing that happens is that there is no peristalsis (activity) in Oesophagus, stomach and duodenum so food doesn't get digested properly. This is happening to me now. I googled a diet recommendation for Gastropareisis and should not be eating any raw fruit or veges, minimum fat and red meat, no fibrous foods and so on and so on. Soups, milk puddings, yoghurts, icecream that sort of thing is mostly what I have now along with cooked fruit and veges. Have an appointment with the Gastroenterologist on 20th this month so am impatiently awaiting that day to see what she has to suggest.

    Good luck to you.

  • Yes you need to see a gastroenterologist. There are ways of jollying it all along - some involve medication (eg Prucalopride) some physical like using enemas or Peristeen (a form of anal irrigation - sounds dire but works very well and gives the control back to you); and other meds, probably antibiotics, but later probiotics, to zap the bacterial overgrowth. I don't have scleroderma but I do have a bowel motility disorder that is (probably) a separate issue from the Raynauds. If you can clear your gut and speed things up, that will enable you to increase your exercise levels which will ultimately be the best thing to do to promote health in the longer term. Unfortunately if your bowel is unreliable then exercise is really tricky. Get rid of that internal sewer and give it the chance to nourish you properly again! A continenence advisor will help with the practical management but you will need the GI team to do tests, diagnostics and prescriptions. Be assertive! It has taken me many years to get to this point, I am a lot better now than I was 30 years ago!!

  • Hello blueberry...a lot of time has passed since this post & discussion here, but I've just found it and am finding it very helpful. Am going through my version of this now (you've very helpfully just replied to my post here about this)

    I've been researching this bad breath & wondering why I don't have it, because I share all this issues. I think the reason may be that immunology has me permanently on daily augmentin (co amoxiclav) and in this YouTube video the scleroderma expert medic explains that augmentin (or other antibiotics) is prescribed when breath tests indicate bacterial overgrowth. Have your consultants mentioned this?

    Here is the link:

    πŸ€πŸ€πŸ€πŸ€ coco

  • Goodness, that post i made has really brought back memories and i now remember just how awful i was feeling when i wrote it and just how much i have improved since i had the rectopexy. All those replies were so helpful at the time and the support and concern shown made me cry.

    Since the op i have had support from an incontinence advisor and i use anal irrigation and anal plugs which both help to a limited degree. I have stopped taking omeprazole because that was causing the build up of huge amounts of wind which with my poor muscle control escapes at all the wrong moments. I have in the past had bacterial overgrowth and been treated with long term antibiotics but dont have it at present. I think the halitosis has improved a bit, peppermint oil helps as well as lots of help from my dentist.

    I always wear protection and carry everything i need to sort myself out if i am incontinent as i refuse to let it rule my life. There are awkward moments sometimes but i just take a deep breath and get on with it as i know that meeting people and keeping busy keep me sane.

    Before the op i had a lot of discomfort and pain in the lower abdomen but that has reduced now. I have tried almost all possible dietary changes but none have made much difference to me. I am vegetarian which doesnt help but i do avoid all pulses.

    I do hope you get some good advice as it can be so miserable and can be very detrimental to your self esteem. Take care of yourself and do try to get out a bit, why should you suffer socially just because your illness has these difficult symptoms.

  • I am so so vvvvv grateful to you dear blueberry...I can't help weeping as I type this reply: your kindness at this moment means so much to me + am so sad you have had all this to bear + I have huge respect for how resourcefully you've coped with everything + for how positive you are now...you are comforting & inspiring me just when I need this

    Wishing you every best wish

    πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜

  • Thank you for your kind words. If your consultant recommends surgery in my experience it has helped and it wasn't too bad, worth it in the long run.

    I do hope things improve for you soon xx

  • πŸ€žπŸ‘πŸ€πŸ˜˜

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