- United Kingdom
My stoma story - Tackling life, head-on
I was 10 years old when I was first introduced to Cancer and its devastating effects. My dad sat me down and explained that my mum had been diagnosed and how she only had two years left to live. I can still remember the raw sadness now. Years later in 2017, I was to learn that I too had got the big C. I’d noticed blood in my stools and not long after was diagnosed with bowel, bladder, colon, and prostate cancer. The full set.
Keeping my head while losing my bladder, prostrate and rectum
I’d got Stage 4 cancer which meant it had spread to multiple areas, although fortunately it was all isolated to the pelvic area. I had to have something called a Pelvic Exenteration, whereby my bladder, prostrate, anus and rectum were all removed.
It was a big shock and even today, I live with a sense of the unknown. It’s the kind of mental trauma that can cause lasting problems. Luckily for me, I’d had a mental breakdown in 2016. Yes, I really do mean luckily. Depression is a terrible illness that can destroy lives – and very nearly destroyed mine. But thankfully, with the support of my wife, family, and counsellors, I’d beaten it. The coping mechanisms I’d learned a year previously helped me keep my head while I was about to lose so much of my pelvis.
Life with two stomas, two bags and two kids
My kids were 9 and 11 when I was diagnosed. We kept them fully informed all the way through, never shying away from even the hardest questions. Today, they understand why their dad has two bags and no butt! I got used to the idea of having two stoma bags by taping a Capri Sun and a bag of M&M’s to my body! It certainly lightened the mood. Nowadays, the biggest issue with having two stoma bags is having to carry around twice as many supplies.
One step at a time
I’ve always been an active person. I love being outside with my family, taking long walks in the countryside, playing rugby, and going swimming. So being cooped up in hospital for three long weeks wasn’t easy. I’d lost a lot of mobility, but I was determined to walk out, rather than be wheeled out. To build up my fitness, I took progressively longer and longer walks. I set myself small milestones. My goal was to walk my son to school and back like I used to before I was diagnosed. It was only about half a mile but that was a big achievement – it was one of those things I wanted to tick off and it gave me a sense of normality again.
One of the things I really wanted to get back to doing was swimming. It was probably about six to eight months after surgery that I got into the pool, and it was one of the most freeing experiences for me. I still sometimes get a bit self-conscious about my bags, so I often wear a base layer if I’m in a pool. I always wear a fresh bag to make sure the adhesive is new and then add extra tape for greater confidence. I actually prefer swimming in the sea - you don’t feel the weight of the bags and you don’t even notice they are there. It’s a very liberating experience.
My other big hobby is rugby. I love the physicality of the game and the camaraderie of the team. My first game back was an emotional experience. All the guys were really pleased to see me on the field, and I think that inspired us to the win. I certainly didn’t hold back! In fact, I didn’t even tell anyone about my stoma the first time I played. Nowadays, I take it a bit easier. I only play when I feel at the top of my game and even then, for 20-minute stints. I protect my bags by wearing shields over them and my hernia support belt. It still hurts when I get tackled hard, but it’s worth it.
Back to work
I love my job. I work as a Project Manager for Bank of America. They’re great employers and really supportive, first of my mental health and then my cancer. I started by easing myself back into the routine, going 3 days a week.
My biggest fear has always been a leakage. I even started carrying my supplies in my laptop bag so I could keep them with me at all times!
My stoma nurse has always told me that I can do everything I used to do before. It’s really empowering when you think that way. You just have to think things through slightly differently. It’s like food. I can eat pretty much everything I ate before surgery really. I just avoid sweetcorn, peanuts, and beansprouts, simply because they tend to go in whole and come out whole too!
I have to think a lot more carefully about dehydration now as well. It’s a balancing act. I have to drink plenty of fluids for kidney function, while accepting it will affect the output of my ileostomy. It’s all about learning to live with my stomas. Understanding the effect certain shower gels and moisturizers can have on adhesive for instance. And how to avoid leakage and sore skin.
The future is only one day away. So, I set and reset realistic goals. Like getting back to working full time, instead of three days a week. Or getting back on my motorbike which I recently achieved. When circumstances allow, I also want to go skiing and yachting in Greece. And I’d love to go to Alaska too.
My advice to anyone with a stoma
Set small, achievable goals and don’t expect too much of yourself too soon. Try to build up your core strength before surgery, that way recovery will be quicker.
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