Is anyone else suffering faecal incontinence due to weakness of anal sphincter muscles?

[nannysue1950]

[zenabb]

Oh, yes. I have for some years now and had to adapt to lead a life as normal as possible. I always keep with me a plastic bag with some long pantiliners, some flushable toilet wipes kept moist in a nappy sack wound tightly round them, a change of pants and a plastic bag (to put the dirty pants). I found it too bulky to keep a spare pair of trousers in my bag. I always make sure there are toilets where I am going and make a point of knowing where they are and if they have lots of toilet paper. I keep a stock of long pantiliners at home to line my pants, and near the toilet a box of flushable toilet wipes, nappy sacks to put dirty pantiliners in and a constant stock of toilet paper. I keep as clean as I can so that I do not smell or smell of roses. None of it cures the bother. There is no cure. It all took me a long time to accept and I still get a little stressed about it but there is no choice and I want to live my life and have fun. Most of all I don't want to have a long face for the sake of myself and other people.

[nannysue1950 in reply to zenabb]

have you ever consulted your gp/consultant? is there nothing medically that cn be tried to help these problems?

[zenabb in reply to nannysue1950]

Yes, I have had an endoscopy and for my age (80) my sphincter is good! I play around with my laxatives, softeners, enemas and my iron (this last gives me diarrhoea) as well as I can. That way I can diminish my incontinence, but if I get too constipated it is bad as it blocks for weeks and I have to have something stronger or an enema to unblock my rectum. The movements of my guts are very slow and cannot cope with constipation.

[KatyP]

Oh yes!

I too have had this for the past couple of years. It used to get me really down but now I do exactly what Zenabb does. The only thing I can't really do these days is swim or wear white trousers in the summer. Still ..... things could be worse couldn't they?

x

[zenabb]

I wonder if there is sphincter involvement in scleroderma. It has been going round in my mind for some time. I always use to have urgency of micturition, I lost 4 pregnancies at about 3/4 months until I was lucky enough to be seen by a gynecologist at Hammersmith hospital who had just come back from India. There he had seen Mr Sherodkar who told him to use a purse string suture round the cervix for cases like mine. I was the first case in the UK. He used the method for each of my pregnancies and I had 4 wonderful children. They in turn gave me 12 grandchildren all together. But now it is my anal sphincter that gives me trouble. My children obviously have not inherited my trouble.

[grannyannie in reply to zenabb]

I also had problems carrying to term. I had a Sherodka suture fitted in 1972 when I had my daughter. I have slight problems with my sphincter and bladder and am working on my pelvic floor muscles.Do you think these two things are related?

[zenabb in reply to grannyannie]

I wonder if there's any research on this. My personal opinion is that they are related. It was good to hear from you.

[Yorky]

Me too, althought probably not as bad as zenabb. I always use pantyliners and have tissues and wet wipes with me. It only occurs just after a bowel movement for while, and once you are aware that you have a problem it is easier to deal with. I also take iron tabs and they give me diarrhoea, but as it usually only happens in the morning I tend not to go out before lunch, which suits the raynauds as well.

[pauline51]

I too have had problems , after opening my bowels , I would experience leakage and not known I had done it. This went on for years. I used to wear extra long liners and carry spare ones and knickers too. After telling my specialist about this, he sent me for tests and was advised to try anal plugs. They are a life saver. I use them after opening my bowels. I get awful pains in my lower stomach and pains in both groins only after opening my bowels . I also suffer from wind, bloating, burning and itching of the anus. I have had numerous colonoscopies and endoscopies. My Gastroenterolgist is of the opinion that my scleroderma has spread to my bowels.

[Leenie]

I too suffer from leakages. Normally I am not aware of it until I visit the toilet. But the last time it was very aware of it. How embarrassing! I now carry wet wipes etc. There seems to be no particular reason as to why it happens. It is usually in the morning when I arrive at work so I have stopped having breakfast, to see if that has anything to do with it. I phoned my rheumatologist when it started happening about a year ago and she said it had nothing to do with the Scleroderma but I have read that it does..

[overcomer]

yes i too have this problem, I've just had my first visit with my Gastroenterologist and it really does have everything to do with scleroderma.my Gastro Doc said that he's sending me for therapy and i should be alright. So i would advise you to check in with a Gastro Doc.I hope you feel much better.

[Jensue]

I have issues with leakage and like others always use long pantyliners but was sent to see a colorectal specialist after my GP found out my father had bowel cancer at an early age. Following that visit which I did mention my problem he sent me for specialist tests which tested the sphincter muscles and also nerves these tests showed that I had nerve damage to the anal area and so did not have the feeling of passing motions.I tried pelvic floor exercises & biofeedback but neither worked. They then suggested I try a sacral nerve stimulator and I now have one permanently fitted and it does help.

I have Systemic Sclerosis and was told that this can cause damage to nerves as well as slow motility of the guts but these can also be cause by traumatic births.

[vulcan_princess]

Hi. I was diagnosed with scleroderma in 1993, and I take two anti-diarrhea pills once a day for fecal incontinence. This was recommended by my GI doctor. I also have had problems with extremely large and bulky stools. My GI recommended Meta-Mucil (sp?). It a high fiber powder that you mix with water and drink. I take it once a day. I guess this (taking the Meta-Mucil and the anti-diarrhea pills) might be a little like stripping gears on a car for a healthy individual. However, this routine works for me. My peristalsis (muscle action in your esophagus which propels food down to your stomach) is nonexistent. I also have problems with my intestines and colon. I would recommend talking about your GI doctor about using a high fiber drink every day. If you use it every day, you might not be able to have a bowel movement without it.