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
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.
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.
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.
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Scleroderma & Sacral Nerve Stimulation Trial for bowel problems
Little hand movement
Gastro problems
Swallowing problems
