Sharing My Story Of Bowel Incontinence - What I've Been Writing About

Over the past few months a few of our posts have referred to some 'writing' that I've been busy with since we arrived here in Spain last December. In truth I'd started writing some time before then as well, however, as yet the purpose or subject of my writing is not something I have felt able to talk about more openly on our blog, until now. The subject I have been writing about is bowel incontinence, a condition I have suffered from since birth. Statistics from the Bladder and Bowel Foundation website tell that bowel problems affect 1 in 10 people in the UK, but because of the social stigma attached to 'the poo taboo' the majority suffer in silence. In fact it wasn't until I was nearly 30 that I finally went to a doctor and asked for help, embarking on a journey over the last 5 years that has led to a whole new level of life, vitality and gratitude in my life. Not only do I now have a level of bowel control that I never experienced before, but also by writing about my experiences of incontinence I've discovered a whole new side of my self and my character that I had suppressed for almost three decades.

Click here to read about why we're supporting the Bladder and Bowel Foundation

I was born with a severe case of a condition called imperforate anus, that included extensive deformation of my anus, sphincter and rectum. With no way to empty my bowels I would have died soon after birth, but my life was saved  instead by emergency colostomy surgery. Later, when I six months old and was considered strong enough, I underwent a much more complicated surgery to construct and repair the absent and damaged parts of my anatomy. This was followed by several years of painful follow up appointments to stretch and widen my new back passage using metal rods.

Although the surgery was successful in many ways and made my back passage more cosmetically normal, it did not provide normal control over my bowel movements. As I would go on to discover in the years that followed I had no sensation of when I needed to go, little control to hold it in and (ironically) no ability to push it out either. My rectum also didn't fill and empty in discrete bowel movements. Rather any stool that reached my rectum tended to come straight out, leaving me in a state of what I can only describe as continuous leakage.

It was during these earliest years of my life, even as a toddler, that I decided to start trying to hide the frequency and severity of my accidents from the world, including my parents. By the time I was at infants and junior school I was already stuffing my underwear with toilet paper to try and keep them clean between my infrequent visits to the toilet. I was scared that even though I was having accidents all the time that if I went to the toilet too often my classmates would notice and guess what was happening. Some activities were naturally harder to cope with than others, PE and swimming classes for example, but somehow as the years passed by I kept finding ways to hide my accidents and my dirty underwear in new situations.

By the time I started comprehensive school keeping my daily accidents to myself was a way of life. By now I was handwashing most of my own underwear when my parents were out, buying replacements with my paper round money and generally put all my effort into being what I considered to be a 'normal' kid. Along the way there were plenty more challenging and downright disgusting, horrible circumstances to overcome but every time I did so it reinforced my beliefs that (1) I could deal with this alone, (2) it was better that way and (3) there was nothing that could be done to help me. Indeed, I lived by these beliefs until I reached the age of 28.

Still, just as much as hiding my accidents was a way of life, so was never letting my incontinence influence a decision or outwardly hold me back. School life was especially tough, but I still did well academically culminating in my graduating with a 1st class Oxford University degree, a PhD from Durham University and starting work as a researcher at Cambridge University. Outside of school I played and participated in all of the sports I wanted to, including team sports, and won some national titles as well. I had several short term relationships with other human beings and even found myself in a long term relationship that had started at university, with Esther (who was the one person I eventually and grudgingly admitted some sort of occasional 'accidents' to although without any detail).

Still, by the time I reached my mid-twenties I felt pretty good about myself and if I'm completely honest the fact that I had done all of the things I had done in my life and not had to tell anyone about my accidents probably made me feel even more of a success.

My self-image was so tied up in being able to cope on my own that even when I did finally seek medical help to manage my accidents it wasn't motivated by a desire to improve my quality of life because I didn't perceive that there even was a problem in that way. Instead, the main reason I went to the doctors at all was because shortly after completing my PhD and starting work at Cambridge I now see that I fell into a work-related depression that I couldn't seem to shake off. I would never have called it depression at the time, I just told myself I was tired and overworking. All my life I had worked hard and succeeded and now, at the beginning of the academic career I had worked so long to get, I felt aimless and unhappy. I couldn't get rid of the little voice that kept saying "surely there must be more to life than this?" In search of some sort of change in my life that is why, uncharacteristically, I decided under encouragement (nagging!) from Esther to go to the doctors and at least ask if there was anything they could do to help me manage my accidents. However, shortly after going to see a consultant in Cambridge I also decided to change my work and my life situation drastically and promptly sidelined my pursuit of help with my accidents completely.

It would be almost another year later that I found myself once again doubtful and (although I wouldn't have labelled myself at the time) depressed and found my way back to the doctors to follow up about incontinence treatment options. This time, after meeting another consultant, I even went ahead with surgery to try an Antegrade Continence Enema, a hole in my abdomen that allowed me to flush my entire colon with water and so empty my bowels at a time I chose. In some ways having an ACE was a revelation to me because for the first time in my life I could control when I went to the toilet. However, although it was a nice change I still never accepted that I'd been struggling beforehand. Also, I experienced many downsides to my ACE such as my needing to wear a colostomy bag over the ACE site, struggling to fit my irrigations around my commuting routine and still having frequent accidents between times. That is why after a year of trying it out I decided to have the ACE reversed and started using an anal irrigation kit instead, something I had found out about through the Bladder and Bowel Foundation (Esther had found out about the BBF through a sticker she'd see in a service station toilet and pestered me to check them out).

This new kit, called the Peristeen, basically involved administering myself with 2 enemas each day and at least allowed me to stop wearing a colostomy bag even though it didn't overcome the difficulties of erratic irrigation patterns, sleep interruption and continued accidents between flushes. By this time I was working in an office job and after several months of pretending I was fine, I was eventually forced to give in and admit that I was struggling to balance my continence management with my commuting life . It was only then, at the age of 30, that I finally told someone other than Esther or a doctor about my incontinence and submitted myself to workplace modifications.

This was in 2012 and it was the first time I had to publicly associate myself with the word 'incontinent' which I coped with by making sure I never revealed the full extent or nature of my accidents.  However, the workplace modifications didn't really resolve the problems I was having because nothing physically was being changed. What followed was a year and a half of feeling trapped in a strange kind of limbo, working from home half the time, feeling a burden at work and travelling up and down the UK to investigate other possible medical interventions like artificial sphincters at St Marks Hospital, London. Yet after all of the waiting, tests and rectal probes alternative options were ruled out and it became clear I had one simple choice. I could have a permanent colostomy or continue to use my Peristeen Kit.

At first I wanted to go for the colostomy, I was just so certain it was what I needed because it was the only thing that seemed to offer a change of some kind. I didn't like feeling a burden at work or people knowing I was struggling. However, at the same time I didn't want another surgery or to have to live with a bag. Having had to live with a bag was one of the reasons I'd had the ACE reversed in 2012. I knew that plenty of people live full, active and happy lives with a colostomy bag and that I could as well, but when I still had another option on the table it just seemed so drastic to wear a bag permanently just to fit in and go back to being better able to hide my incontinence again. Something didn't feel right.

It was at this point I decided to keep using Peristeen and change my life again instead. I convinced Esther and we planned to leave our jobs and take some time out to travel. We planned our wedding to coincide with our departure for a long distance hiking tour that we called our 'extended honeymoon' and all was going well until 6 weeks before the wedding when my old ACE wound opened into a hernia. When a last minute surgical appointment became available for me to have my hernia repaired, just in time to recover and go through with the wedding and honeymoon I thought I was lucky. A week later when I was in a critical condition because of a post-operative infection I felt a lot less fortunate. Being cut open without anaesthetic in accident and emergency to drain the abscess was a horrifying experience and the first time I realised my incontinence was not something I could keep pretending hadn't affected me. In the week that followed, lying on the ward pumped full of drugs was when the idea to write about my experience of incontinence first really struck me. Perhaps there were some lessons in my life after all, I just wasn't sure what they were?

By the time I eventually recovered and we took on a modified adventure to tour Europe in a motorhome my idea for a book slipped to the back of my mind. It would be a whole other year later, when we found ourselves drifting in Europe but feeling (once again) that there must be more to life, that the idea came back and I decided to act on it. I would commit to sharing my 'inspirational story' after all. The story of all the ways I had overcome incontinence and succeeded in spite of my accidents. It was still very much how I saw my life and on one level I suppose this outlook was partially accurate. Certainly the practical recollections were all there and at first it was only my most vivid memories of accidents, embarrassments and hiding that came back to me.

Yet, soon after I began to work through and write down these memories something else began to emerge alongside them, a version of events I'd never before considered that started to cast doubt over mine being a 'simple' story of triumph over adversity. By the time I had fully committed to writing a book about my incontinence in late 2015 my approach and attitude to writing had changed. No longer did I see myself simply putting in the hours until I had covered all of the years and incontinence related events separating my birth until the present day. I mean, I still wanted to do that but not only for the purpose of producing a coherent book. Instead what I was finding was that the act of writing had become a form of therapy, the only way I could find to confront myself with the reality of all of the other ways my hiding had affected me. What had started out as a book about how I had always succeeded in overcoming obstacles had turned into a personal journey of discovery.

I began to understand how and why I struggled so much to feel emotions, why I couldn't empathise with others, why I felt the need to be the best all the time, why I relied on external praise for my self worth, why I got angry with anybody who suggested I was wrong about anything, why I hurt people close to me and why I always had to push myself to extremes whether in sport or work.  I started to see the hidden cost of hiding I had been paying and indeed still was paying in my daily life because I hadn't fully accepted my incontinence and the person I really was. I came to see that ever since I had been a child, scared of being rejected, laughed at and unloved because of my accidents I had been hiding the person I really was beneath a thick layer of insecurities and a hard shell of bravado. All of the choices I had made in my life and so many of my character traits were only there to cover up my fear of rejection.

Through my writing I came to see that it had been keeping my 'problem' a secret that had made it such a problem at all and I don't mean only in the practical sense. Yes, there was and always had been medical help available if I'd been willing to look sooner. However, beyond that, all of my emotional baggage was intricately tied up in my hiding as well, emotional baggage I was able to work through and start letting go of by writing about it.

In the past few weeks since we have arrived in Cabo de Gata this process has accelerated as I've taken advantage of a stable base to commit my time to writing and completing my story as a book about my incontinence. During that time the lessons I have learned have finally crystallised and the story I want to tell is no longer one of never letting incontinence hold me back by denying it was even a problem, but never letting it hold me back by allowing it to be out in the open.

The more I have opened up, told people and accepted my incontinence the more I have found happiness and joy in my life and also physical relief as well. I still have accidents, I still have challenges, but they are lessening as I increasingly become aware of my body and the messages it's sending me, messages I trained myself to ignore and overrule for so long.

There's still a little way to go, but as I come towards the completion of my writing I wanted to share a few words here and also ask that people might consider learning a little more about bladder and bowel problems themselves, problems which affect so many people. There are literally millions of people in the UK alone suffering in silence and doing so unnecessarily and although I still feel slightly uncomfortable sharing all of this on our blog, if it can help in even some small way to changing that situation then it is easily worth it.

Click here to read about why we're supporting the Bladder and Bowel Foundation

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Adventures In Life, Love, Health & Travel: Sharing My Story Of Bowel Incontinence - What I've Been Writing About
Sharing My Story Of Bowel Incontinence - What I've Been Writing About
Adventures In Life, Love, Health & Travel
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