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How I'm getting used to life with an ileostomy, urostomy, and no backside

The road to recovery starts in the mind.

I’ve been getting on with life as best I can since being diagnosed with cancer in March 2017 and then having radical surgery to remove my prostate, bowel, and bladder. I’d like to share with you my mental health struggles; my diagnosis, treatment, and recovery, as well as how I’ve kept positive and motivated.

The road to recovery from ostomy surgery varies from person to person. For some, it can be short and trouble-free. For others, the road is long and scenic with bumps along the way. At times, mine felt like I was riding on a bicycle crossbar up the steep cobbled street from the old Hovis bread commercial. I was eight months post-surgery and still had an open wound from the removal of my anus and rectum which needed daily dressing. Our bodies are amazing at healing, but some of the physical wounds from surgery can take time and require support from doctors and nurses. Complications happen, but my long recovery has been mentally difficult as it has been physically.

The depression and anxiety weren’t something that just happened to me. In September 2016 I had a mental breakdown from my job before I even knew I had cancer. After mustering the energy to call my GP for an appointment, I completely fell apart when I admitted my deepest darkest thoughts which I'd been carrying heavily for so long. It’s important to say, and I cannot stress this enough, mental health issues are NOT a personal weakness or something to be ashamed of. It is perfectly normal to experience mental health problems following ostomy surgery, it’s even more expected for someone to experience depression. IT’S NORMAL!

I was fortunate to get the help and support needed to make a full recovery. I received a number of different treatments including talking therapy, cognitive behavioural therapy, mindfulness meditation, as well as medication. It took six months, but I did recover. Looking back, I’m grateful in many ways for the prior bout with depression because it taught me how to deal with the cancer diagnosis and develop a strategy for 18 months of treatment. Having already experienced a breakdown, I was able to recognise my own signs of struggling and seek help through my GP and therapist straight away.

The first step (and the premise of this post) was to have an unwavering belief that I would beat cancer and overcome any mental obstacle in my way. Being a rugby player, I visualised mental health as opposition on the pitch. I can’t sidestep, or dummy. I had to hit my opposition head-on and knock them on their arse. That’s what I planned to do with chemoradiotherapy. Now you can’t tackle or run through an entire rugby team. You must do it player by player. I didn’t think about the entire 18 months ahead of me as one obstacle to overcome, rather, I broke it down into small stages. Scan by scan. Appointment by appointment. 

I also found ways to challenge myself along the way. After I accomplished the treatment and surgery, my first goal was getting back to walking my children to school, then walking the dog, then going to shops — with each stage increasing my activity. I also set about doing things to keep me occupied when I wasn’t as active. I played lots of online Scrabble, read books, and completed a Mental Health first aid course.

This was from my first walk post-surgery.

This was from my first walk post-surgery.

One of the biggest inspirations was meeting my stoma nurse for the first time. I had to give up rugby prior to chemoradiotherapy and didn’t think it would be possible to play again after ostomy surgery. She told me that anything I did before would be possible with an ileostomy and urostomy. I decided there and then that I would get back to playing before the end of the season. There were so many times during recovery that I considered it impossible, but each time I walked further and became more active, my desire and belief grew stronger. In April, I got back on that pitch with ball in hand and hit every guy in front of me as hard as I ever did.

I wouldn’t be here without the fabulous support of my wife Lindsay, friends, family, stoma nurses, and the surgical team at Royal Liverpool Hospital. And with encouragement from a fellow double bagger, Rachel Jury, I’ve taken the plunge in writing my own blog.

Final thought: If you have the positive mindset to turn “I can’t” into “I can” then you’re on your way.

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