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Patient's view: Living with bowel incontinence


A patient’s experience of living with bowel incontinence and the benefits of having a dedicated continence nurse specialist.

I have been suffering with Bowel Incontinence since December 1998 when I started having MS related spasms (although I did not know at this time that I had MS and what the spasms were!).  I remember having one of these horrific spasms in the kitchen during the Xmas break and sensing the urgency to get to the toilet!

Over the months from being diagnosed in March 1999 with MS I started having bowel accidents! They are a complete evacuation of my bowel, which is very distressing, embarrassing, disgusting and I worried about leaving the house every day for 11 years in case I have an ‘accident’.

I moved house in 1999 and registered with a new Doctor’s practice. I explained about my bowel incontinence and the following year I was referred to see another gastroenterologist. He did a colonoscopy and took a biopsy but found nothing wrong. He decided to refer me to see a professor of anal physiology who carried out all sorts of tests and the diagnosis was that I have nerve damage in my rectum from the MS, and a tear in my sphincter muscle from childbirth.

My incontinence has got worse over the years. I was diagnosed with diabetes in December 2003 and was put on metformin. These tablets worked fine for quite a while but then in the summer of 2005 I started having the most horrendous bowel accidents. So my tablets were changed and everything was back to ‘normal’. Normal for me meant that I would have a bowel accident at least once a month or more frequently!  My tablets were changed to gliclazide and everything settled down again.

I have had contact with a continence nurse since 1999 (in fact she is the one who first diagnosed me with diabetes following a urine sample I asked her to check! She sorted out my bladder incontinence for me by introducing me to intermittent catheters which I have been using since about 2003 and are absolutely brilliant! I also take solifenacin succinate to stop the urgency problems I have with my bladder. She has tried to help me with my bowel problems and asked me to try an anal plug! Well, I did try this one day as I was going to a meeting some distance away and inserted it at 10.00am. At 5.00pm I went to the toilet and something shot out. I felt very sore and uncomfortable and phoned the doctor’s surgery for an urgent appointment. I explained to the doctor what had happened and took him a sample of a plug. He examined me and fortunately it had come out! I was very relieved! It took a few days for the soreness to disappear and I will never use them again!

My continence nurse then introduced me to transanal irrigation in January 1998. This was difficult to do initially but once I got the hang of it I think the longest I went without a bowel accident was 19 weeks! It was brilliant because my confidence increased and I could relax because I was confident I wouldn’t have a bowel accident. Unfortunately over the months things changed again with my bowels.

I began to have a problem that every time I went to the toilet to pass urine I check myself and found I had leakage from my bowel. I went to see my GP who gave me Picolax and I took the first sachet at 8.00am and four hours after taking it I had a bowel movement which was ok. I was supposed to take another sachet four hours later but decided against it as I felt ‘comfortable’. At 4.00pm I was cooking the tea when I had a huge bowel action and it went everywhere including my shoes! 

 I didn’t have any kind of bowel movement for eleven days after that! Since then I went back to having bowel leakage every time I go to the toilet to pass urine. I went to see my GP and he told me he had read my notes and should not have given me oral laxatives!

In mid October 2009 I had to visit my GP and he said he had seen a consultant from the Maelor Hospital, Wrexham who had really impressed him with what he does to help people with bowel problems and that he had mentioned me to him. My GP asked me if I wanted to be referred to him so of course I said yes!

I went to see my new consultant and he examined me and realised that I have no muscle control in my rectum at all and he said he would preform a colostomy.

I saw a stoma nurse and she explained to me what will happen if I choose to have a colostomy, what it looks like how I would have to look after it, what I can and can’t do (physically and eat and drink to start with). She gave me lots of information and samples of ‘the bags’ I would use. I asked her lots of questions which she answered and so I was able to make a fully informed decision there and then

Since surgery I feel really well and wish it had been offered to me a long time ago because it is life changing for me! I no longer have to worry whether I will have an accident either at home or more importantly when I leave the house!


Readers' comments (3)

  • I am so sorry that you have had to struggle for so long to controle your bowels. I am also sorry that you have had to have a colostomy to improve your condition. I would like to reassure other MS sufferers that a Colostomy really is the LAST RESORT treatment for incontinence from the bowel. Like you I have MS . I started having severe faecal urgency and on a couple of occasion when out of the house had a complete evacuation of the bowel as I could not hold on and get to a toilet in time . Awfull!! My Continence Advisor told me that the inability to hold on was due to the MS effecting the rectal muscles and their ability to tighten and hold. She advised me that I neeed to working hard to controle the consistancy of my stool-(Poo!). I do this by making sure that I eat a diet that keeps the stool firm. I try to keep slightly constipated rather than loose. If I am going out I take Imodium "instants" to constipate me . These ensure that I do not get taken short when out. If I am out all day I may repeat the dose after four or five hours. If as a result I am a little constipated I take Ortisan fruit cubes(available in Chemists/Supermarkets /Healthfood shops) just to sofen up the stool again. These cubes are a natural laxative and I find half a cube is enough just to loosen the stool again. I now feel that I have good controle over my bowels. I can maintain a good firm consistancy of the stool and with a little help can constipate or loosen depending on my needs. Constipated when I want to go out and normal soft stool when I am at home and have easy access to a toilet. Since having controle I always have time to get to a toilet and have had no accidents.

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  • You are not alone - up to 1 in 3 women who have had children suffer from bowel incontinence or BCD (bowel control disorder).
    Depending on the underlying cause and specific anatomy - you may be a candidate for a minimally invasive therapy called Secca.
    Secca has many clinical studies proving effectiveness and just got the CE mark to distribute in Europe. For more info go to - GOOD LUCK!

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  • What ghastly experiences you have had. What a lot of mixed info (and treatments and care you've had too!) It is mighty worrying when one realises one's bowels are not what they were.

    I started having stomach cramps of such magnitude they floored me. Lots of additional symptoms & finally seen my gastronenterologist who, after performing colonoscopy diagnoses IBS. But this didn't help knowing because advice has been very conflicting and confusing.
    Nett result is dodgy bowels. I can not control wind at all, and frequently have small accidents (which I live in fear of becoming major accidents). A midwife pal said its comon in women who have had forcep deliveries earlier in life. Oh great, I can blame the kids for something else.

    I'm now 54 and stressed big time that I will have major bowel movement in public. I am a Physical interventions trainer and manual handling trainer, First Aid trainer and you may well chuckle at my dilemas! To put it frankly, I fart like a rusty machine gun going off! I spend a great deal of my time walking with my butt clenched and am the butt (excuse pun) of several jokes.
    Pelvic floor exercises my dear...... I have been told. But they are not working. I am trying to maintain a sense of humour but live in fear of the person in the article's situation becoming my own in the near future. I pray there is better continence advice somewhere ahead.

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