constipation and problems with bowel movement

My name is Roni (30) and I have Scleroderma.

When I was 18 I was diagnosed with Scleroderma and Raynaud's.

During the years I've been dealing with the condition with the help of doctors and medication.

2 years ago I started suffering a lot from constipation and problems with bowel movement.

I am treated with Rezolor and Normalax - seems to help the constipation a bit, but unfortunately, I'm "leaking" my bowel content... Not fun..

We found a UK website explaining about the condition and the diet it needs in order to be taken care of.

I wanted to ask - is there any treatment out there for this specific bowel symptom? Or is a healthy, condition fitted, diet the only answer for me?

Thanks a lot in advance!

Roni Weissberg

11 Replies

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  • Hi Roni

    I have had bowel complications with my scleroderma since the beginning. Firstly constipation and the a very variable bowel pattern mostly loose and frequent with some incontinence and some difficulty in evacuation. The internal anal sphincter is not functional and now I have had a neurosacral stimulator fitted which is like a pacemaker strengthening the muscle and sphincter. It helps but does not completely solve the problem. To prevent leakage I also use a Qufora anal washout system and if required a persistent bowel washout system. The Qufora is great as it is small and can be used quickly. Hope this is helpful.

  • Hi Lindabickley, I am very interested to hear about the Qufora - I had a neurosacral stimulator inserted many years ago but unfortunately for me it wasn't a success and I had to have it removed. However I am very interested to read about the Qufora - was this suggested by your doctor or your gastroenterologist.? Also did you get it on prescription ? I am really suffering with severe incontinence and would love to find something, other than a colostomy that would help . one last question do you take medication for you bowel as well. Sorry to ask so many questions but feeling a bit desperate at the moment as it is difficult to leave the house. I am so pleased you have found a solution for your problems Xxx

  • Hi monika

    For me as a treatment for constipation the following medications helped:

    Resolor

    2 mg a day

    normalax

    17 mg 2 times a day.

    you can use Normalax up to 4 times a day as needed. For me, it has increased the "leaking" problem.

    I hope this helps a bit and feel better

    Roni

  • Hi Monika

    The Qufora was recommended by the continence nurse and is prescribed by my GP who had also never heard of it. The product code is 53601- 015. It is a small bulb and cone which uses clean tap water to enable me to empty the anal canal. It's great as it can fit in a large handbag and can be used in any loo in a few minutes. The other system is peristeen wash out which is a more complex but easy to use system which I can use to clear the whole of my lower bowel. If you put that in the search engine you should get a video. Afterwards there is a bit of leakage but it is just water. Sometimes it stings so a barrier cream is good too. I use codeine phosphate when necessary to stop loose stools and leakage, as my current problem is loose stools and leakage but the Peristeen is good for constipation. If you see a continence specialist they should be able to explore this with you. The Peristeen was prescribed by the colorectal surgeon. I have though about colostomy but am hesitant as it's so final! Hope this helps.

  • Thank you so much for the info. I can now go back to the doctor with more information xxx

  • Thank you for the information. I am meting my doctor today and you gave me a lot of material to talk to him.

    I'll find out about the treatment you recommended to me.

    Thank you!

    Roni

  • Hi I have just been to the doctor and mentioned the Qufora but she couldn't find anything about it. I was wondering how you got yours . X

  • I too have the same problem was told to do certain muscle exercises by the bio feed back clinic at St Thomas hospital. My symptons are the same as yours and have been going on for years. I also use the Qufora anal washout system that helps but if I don't use this I get leakage. I have raynauds,limited scleraderma and sjogrens.

  • Thank you Roni, I am seeing the doctor this morning so will have a word with her. Take care xxx

  • I also suffer from the same bowel problems. In addition to using qufora i also have rectal plugs which can be helpful when you want to go out. There is a briliiant consultant nurse specialist working at the London hospital in Whitechapel who can help you with all incontinence difficulties, see if your Rheumatologist can refer you. This is such a difficult problem socially and can really affect your self esteem, its worth trying to get all the help you can.

  • I wonder if you could let me know the name of the nurse at the London hospital . Thanks a lot x

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