Chris’s Story

Chris has been dealing with health issues since early childhood but here he talks about how having to tackle incontinence in adulthood has been so affecting.

Living with incontinence is not easy and I often feel extremely low but I try not to let it stop me from doing the things I really want to.

I never truly relax because at the back of my mind there’s always the fear, real or not, that someone will notice something.

Iwas born with a rare metabolic condition which was diagnosed when I was five.  By the age of ten I had developed severe hip problems which caused significant disruption to my time at school.

Today, I still live with the legacy of these two conditions, namely low vitamin D, osteoporosis and osteoarthritis. I’ve always had health issues but I never imagined that I would develop significant bladder problems in my early thirties. I didn’t experience any major problems growing up apart from being a late bedwetter and so the medical profession is divided over whether my adult continence difficulties are directly linked to my metabolic problems or completely coincidental.

Things began to deteriorate in my mid to late twenties when I began experiencing occasional bedwetting and then the odd day accident. This has gradually progressed into a significantly overactive bladder with severe urge incontinence and more recently bowel control problems. The occasional wet bed I would put down to sleeping deeply or a heavy night out but when it became a more regular occurrence I blamed it on stress because I was working long hours in a difficult job at the time. Severe embarrassment meant I largely suffered in silence and managed the condition myself, entering the twilight world of mail order purchased products such as waterproof mattress protectors, bed pads, absorbent incontinence underwear, and plastic pants.

When I moved in with my then partner, now wife, she encouraged me to seek help and I finally saw my GP in my late twenties. I tried medication and was briefly referred to our local NHS continence service but due to my continued embarrassment and lack of treatment success I went back to self-management.

Things seemed to improve and often months would go by without me experiencing any problems but when I had to change jobs my stress levels increased significantly and as a result my symptoms escalated and the bedwetting became a nightly occurrence. I sought medical help again and, after trying further medication with little success, I was referred to a specialist in London but despite further tests they could find nothing wrong. Unsurprisingly, I became disillusioned and went back to self-care. My symptoms progressed and I began to have the odd accident during the day. When a phase of extensive business travel led to accidents in train stations, in desperation and for peace of mind, I started to buy incontinence pads for use during the day. They often made things worse because they are difficult to get on and off particularly when you need to use the toilet in a hurry.

I referred myself back to our local continence service and they suggested a course of intensive bladder retraining along with medication. My night time problems deteriorated further and I started to use a sheath and bag system recommended by the continence service and supplied on prescription. I also used this product during the day for a time, particularly at work, when I got fed up dealing with the indignity of having to wear the larger nappy style pads. Due to my increasing levels of incontinence, sadly the system became ineffective and I reluctantly went back to using pads. I am now completely incontinent at night and have very limited control in the day.

In 2017, after nine years of tests, I was finally diagnosed with a severe overactive bladder and poor pelvic floor muscles. I’ve tried countless medications and done numerous pelvic floor exercises with little or no improvement. I have been trying electrical nerve stimulation at home and am on a waiting list for other potential treatments.

Over the years I’ve become adept at managing my problem, and if you met me, you wouldn’t notice. I’ve got over my initial concerns about wearing products and devices when out in public but I never truly relax because at the back of my mind there’s always the fear, real or not, that someone will notice something – a wet patch, an odour, or a puddle on the floor.

Recently I started to experience difficulty controlling my bowels which has led to occasional episodes of faecal incontinence. Even though I’ve been coping with urinary incontinence for several years this lack of bowel control has been particularly hard to deal with. I manage it by careful monitoring of symptoms to help me know if it is ok to go out. Should the worst happen I try to find a toilet and change as quickly as possible because the tell-tale smell of faeces is very hard to hide and the damage to skin can be significant. I keep a ‘clean up kit’ and change of clothes always to hand and I use pads and other devices such as anal plugs.

Embarrassing physical health problems can have a huge impact on your mental health and I have always struggled with severe anxiety and panic attacks. The effect on self-esteem of dealing with faecal incontinence should not be underestimated and on many occasions the highly unpleasant consequences of having been doubly incontinent have left me feeling utterly wretched.

Living with incontinence is not easy and I often feel extremely low but I try not to let it stop me from doing the things I really want to, particularly in terms of family life and seeing friends.

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