My journey to having a permanent ileostomy came through living with ulcerative colitis (UC) for 4 years. Initially diagnosed while I was pregnant, I couldn’t begin taking the necessary steroids until after my daughter was born. From there, it became a yo-yo of medication, until I’d become housebound and was hospitalised with my UC and I had needed blood transfusions. At that point, I knew I had to make some tough decisions. With two small children, aged 6 and 4, I chose quality of life, even if that meant me living with a bag for life. I made the tough decision to have my ileostomy and made it permanent from the outset. I didn’t want further surgeries in the future; I wanted to live life to the fullest with my family.
The best decision
It was actually the best decision I ever made, and I only wish I’d made it sooner. Having my ileostomy meant I could get back to being a ‘real’ mum; I could roll around on the floor with the kids and I could go out without fear of dashing to a toilet. I’d not known anyone with UC and definitely no-one with an ileostomy, but I joined IA (Ileostomy & Internal Pouch Association) (www.iasupport.org), which immediately introduced me to people who understood and could help me find out more about living with my stoma.
However, the steroids I’d been on had taken their toll, and I was bloated and overweight. A lifetime couch potato, I recognised the need to do exercise to get back in shape, but I was never going to do that without a goal. So, I signed up for a charity endurance cycle event, riding from London to Paris in 24 hours. Over those 24 hours, I came to appreciate my ileostomy even more. I had freedom again, and changing my bag behind a tree wasn’t anywhere near as bad as what I had to put up with when I’d had UC.
Taking the plunge
From cycling, I turned to swimming. I needed a personal goal and decided to learn to swim so I could enjoy being in the pool with my children. Like many ostomates, my first thoughts were about how well my bag would stay stuck, but wearing it in the bath at home had made it quite evident that it wasn’t going to come off in the pool. I did, however, try out just about every bag choice on the market, as some of the baseplates were more absorbent than others. Some went all gummy around the edges, but, once I found the right baseplate and bags that could withstand the swimming, I further minimised water ingress by trying out all the flange extenders that were available. I personally much prefer a two-piece bag system, as, after a swim, I can simply unclip the wet bag and clip on a dry one.
Running free
With cycling and swimming now under my belt, I decided I’d like to push myself a little more and have a go at triathlon, which is an endurance multisport race involving swimming, cycling and running. I’d never been a runner, so this wasn’t as easy as I’d assumed. But, like everything in life, the more we do it, the better we become at it. I joined my local North Devon Tri Club and built up my confidence with the swimming, cycling and running. I happily agreed to event after event with my new teammates.
Team spirit
At first, I didn’t tell my teammates about my ileostomy. After all, everyone has lumps and bumps, so no-one was going to know I had a stoma unless I told them. As my friendships grew, I’d tell them about my ileostomy. No-one has ever backed away when I talk about it, and, in fact, I find that people are fascinated and want to know more about how I race with a stoma. My confidence in sharing my story grew, and, as I shared my thoughts and showed what was possible with an ileostomy, more people began following me on social media.
Caroline’s top tips
• Do what makes you feel happy
• Remember that the bag is just a bag—it can give you freedom and need not hold you back
• Try as many of the different stoma care products on the market as you can to see what works best for you
• Mix and match your products, and don’t feel you have to use pouches and accessories from one company
• Don’t be afraid to eat what you love, just make sure you chew well
• Join IA (Ileostomy & Internal Pouch Association) for support and friendships with those who’ve also had stoma surgery, as it makes a huge difference knowing that they understand
How I do it
I get asked all the time about racing with an ileostomy, from what I wear and how I change my bag, to staying hydrated and getting the right nutrition. Personally, I don’t wear any kind of specialist support garments, as the training meant that my core was strong, and lycra is great for holding the bag in place. I would recommend anyone taking up sport to check with their GP before beginning any kind of vigorous regime and to take things easy to start with.
For racing, nutrition and hydration are key. I will eat porridge and banana before a long race, with a flapjack, banana and jelly babies in my transition bags, which you have access to between the triathlon disciplines of swim, bike and run. I always put electrolyte powder in my water bottles on a race, too, as, without my large intestine and colon, I’m likely to dehydrate more rapidly than your average triathlete.
Caroline competes in triathlon events, which involve swimming, cycling and running
A different routine
I’m now racing at all triathlon distances, from sprint triathlons right up to tackling the full Ironman, which involves a 2.4-mile open-water swim, followed by 112 miles on the bike and then running a marathon.
Without my ileostomy, I’d still be that couch potato, but having surgery made me look at my life and make a conscious decision to make every day count. Having a stoma doesn’t need to hold you back. It’s a different routine, but it has given me so much more than I’d ever have dreamed of.
Caroline Bramwell is a triathlete, author and public speaker who lives with a permanent ileostomy
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