My troubles

I have bowel leakage . which is common with scleroderma .

But I wonder if any of you have been treated for it .? Also I have burning dryness of the lady bits . Has anyone been treated for this . I asked RA nurse . Who spoke to Rhumeatolist . what did I get given zero Base . caused by. sjogrens . Well it's flared up as far as I know . eyes mouth dryer . along with down below . What treatment have you been given as finding Dr difficult . . she says speak to the experts in did ha ha .

10 Replies

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  • I am sorry to hear that your having all these problems and not getting any help. I don't where you live but I am under the Royal Free who are brilliant. I have lots of problems with the bowel re incontlnence and have had several ops but it doesn't seem to have solved the problem. I am seeing the gastroenterologist on Monday concerning my whole digestive tract which seems to have got worse so if I get any new info I will let you know . In the meantime sending you lots of healing thoughts xx

  • Hello Monika, I too have been under the wonderful Professor Denton & Dr Ong at the Royal Free & they are wonderful. Sadly I had to stop going because the journey was just too much for me. I'm now looked after very well by my local Consultant.

    So much of what you say concerning bowel incontinence also describes me & I'm sorry you've had the ops but they haven't helped.

    Thank you for your post, I really don't mean to sound thoughtless but to know I'm not the only one dealing with this makes me feel less of a freak.

    Sending good wishes & hugs xx

  • I had similar problems with bowels for years. In the end I hardly went out. Until I met a colorectal surgeon who agreed to give an ileostomy a try. It's a radical decision but 3 years on I've got a life now and wouldn't go back for anything. I also have the sjogens but it mainly affects my eyes and mouth. Hope things improve for you

  • Ooh Gillg, that's very interesting. I've often wondered how much that would help & now I know.

    I'm so very pleased you're happy with the result, that's the main thing.

    I hope you keep well & sending you hugs from one fighter to another! xx

  • Thank you. It's been a long haul but worth it. Xx

  • Hi Gillg, I am so glad that the ileostomy has been a great success. I feel I'm at that stage as it is really difficult to plan any outings as my life is dominated by my bowels!!! A few years ago when I mentioned having one the consultant was concerned about my healing capabilities because of my Scleroderma. I was wondering if you had any problems and also how long did it take you to recover from the operation .xxx

  • The main problem I had was that the constant rushing to the loo numerous times a day had depleted my potassium calcium and Vit D and I went down to 5 stone. The ileostomy itself was fine and I healed well. So I urge you not to let doctor delay if you have decided it's what you want. If they had done mine earlier I wouldn't have vitamin problems Good luck. Xx

  • Thank you so much - I will discuss this tomorrow when I go to the Royal Free xxx

  • Ive been diagnosed with reyneaud..put voltaren ...cream om fingers..DRYNESS..-Do Not...think this is not serious..i had an attack of vitreous from dry eyes..and i believe it was caused by the beta blocker i was on for 10 years....i have ditched it.2 years ago....my doctor dropped me as a patient.....tough....

    My bp..is great since i am out of menopause..no more dry mouth..dry eye...i also feel it gave me reyneaud...if i do go on a blood pressure pill..i will make sure its a vasculator...

  • Hi

    I have the same problem. I have a neurosacral stimulator which has helped a little but still leak until bowel is empty. I have tried peristeen bowel irrigation which clears the bowel but takes a little time. Very easy to use though. The best solution is to use qufora which is a small anal washout system which you can carry in a handbag and use to clear the last remnants after bowel movements and thus stop leakage. I combine this with use of codeine phosphate but do not allow myself to get constipated as this causes more leakage. I find I need to get up a couple of hours before my first activity of the day. Eat and drink to get my bowel moving and then after that I use the qufora. Sit quietly for 10 mins and often this gives me the rest of the day clear. It's a pain but you get use to it. Hope this helps. Best of luck

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