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!