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Running marathons when you have an ileostomy. Yes it’s possible!

by Sarah Russell

I remember when I had my stoma surgery 7 years ago. I came home from hospital and googled ‘What sports can you do when you have an ileostomy?’

I discovered a climber called Rob Hill who had scaled Everest and a triathlete who had done Kona Ironman World championships. That was all I needed to know. That these things were possible. My goals were nowhere near as lofty, so I was pretty confident that if they could manage such incredible challenges, I could run a few marathons. I was pretty active before I had my stoma, but there’s nothing like a bit of life-threatening surgery to re-set your priorities and I found myself yearning for more adventure and life affirming experiences than before.
I now have an insatiable urge to fill my life with as much adventure as possible, to explore, see the world and live life to the max. When life is almost snatched away, the desire to make the most of every minute becomes overwhelming.

Since my last surgery I’ve taken part in 12 marathons including various ultra-distance runs (26.2 miles or more) and stage events (I recently ran 70 miles around the Isle of Wight in 2 days), in fact I’ve now completed 21 marathons in total. I’m not especially fast or competitive... apparently I’m what’s known as a ‘running tourist’. I blatantly use running events as an excuse to travel and to see cool stuff around the world.
It’s a cliché, but there’s something about overcoming an even greater challenge which makes an achievement so much sweeter. As if a marathon wasn’t hard enough without having an ileostomy.

So, I thought I’d share some of the experiences and adventures I’ve had since my surgery, but more importantly what I’ve learned about how to combine running, travel and doing it all with an ileostomy.

Sarah Russell Jungfrau marathon photo

Jungfrau marathon Switzerland
What is it?
A stunning mountain marathon involving 1500m of climbing. It traverses the most beautiful Swiss alpine mountains and villages, and finishes at a ski station at 2800m with views of the Eiger and Jungfrau mountains.

What was great about it?
This was my ‘crazy comeback’ only 9 months after my final surgery. I didn’t even know if I’d finish and it was my first marathon with a stoma. It was incredibly emotional. I ran with my husband and we crossed the finish hand in hand. It was more emotional than our wedding day and it still remains as the best run of my life.

What did I learn?
This was the first time I’d run a marathon with a stoma and at only 9 months post op, I was petrified about all the things that might go wrong. I had convinced myself I’d end up in hospital hooked up to an IV. The reality was I discovered that of course it’s possible to run a marathon with a stoma... even a tough mountain one. And although I was much slower than before stoma surgery, the sense of achievement – after overcoming so much surgery and trauma - was incredible and it made the whole thing so much more affirming. It remains the achievement I’m most proud of to this date.

And secondly…. I learned that Swiss trains have toilets which empty straight onto the track when they’re moving. The less said about that the better.

Sarah Russell at Himlayan race

Himalayan 100 Mile Stage Race, India
What is it?
100 miles of trail running over 5 days in the Indian Himalayas. Much of the event is at an altitude of 3500m and the sleeping/toilet facilities are, let’s say... basic. In fact there was no running water, showers or toilets for 5 days. We ‘slept’ (a loose term) in Sherpa huts at night along with mice scurrying around on the floor.
Despite that, the event had been on my ‘bucket list’ long before I ever was ill, and I’d written it off when I first had my surgery. But eventually I got fitter and my confidence grew, and I flew out to Delhi full of trepidation and fear to try and tackle this mad event.

What was great about it?
The Himalayan 100 was a bit like childbirth. At the time I vowed never to do anything so stupid ever again, it was so painful and tough. But within a few days of it being over, the memory of pain resided and I was telling everyone how amazing it was. It was an incredible adventure with amazing people from all over the globe. I never thought I’d be able to do with an ileostomy – mostly due to hydration difficulties and lack of toilet facilities. But somehow against all the odds, I managed it. The race Doctor was a gastroenterologist from Delhi and he said he ‘never thought he’d see the day when someone with a stoma did that race’. He planned to go back to his patients and tell them about what was possible.

What did I learn?
That hydration is the number 1 thing to get right. Long distance running, heat and altitude are a challenging combination for anyone with an ileostomy, so it was a potentially difficult situation to manage. I experimented and developed a ninja hydration strategy which involved 4-5 litres of electrolyte drink every day. I mostly used Dioralyte™ and SOS® Rehydrate. The stuff you can buy in India from the chemist was pretty good too.

I also learned that the view of Mt Everest at first light, was probably the most incredible moment of my life. Seeing the sun come up and glint on the peak of Everest was totally epic. I learned that taking on something so challenging was as empowering as it was crazy. My mantra throughout was ‘If I can get through bowel surgery I can get through this’. It’s really quite incredible what our bodies are capable of. You might think you can’t go another step, but push a bit and you find that you can and you do.

Sarah Russell Morocco trekking photo

 

Trekking in High Atlas Mountains Morocco
What is it?
Not a race as such, but a trekking trip we did for our 20th wedding anniversary. We hiked into the High Atlas Mountains and spent 3 days trekking, staying in a remote trekking lodge and summiting Mount Toubkal, the highest mountain in North Africa at just under 4200m. We spent 8-10 hours trekking each day. We experienced the Berber way of life, ate amazing Moroccan food and fell in love with Morocco.

Sarah Russell Moroccan food

What was great about it?
A life and marriage affirming trip. If honest, hubby would probably have preferred a week on a beach, but his adventurous demanding wife had other ideas. We immersed ourselves in the culture and the mountains and it was breathtakingly stunning and beautiful.
Having a bag can be challenging at times, but it has never been devastating for me, I’ve adapted and just carried on as before. It’s just become part of me and it’s become something I can forget about. I can’t imagine what it would be like to have a condition which REALLY stopped me doing cool stuff and travelling, climbing mountains and running… losing a limb, being in a wheelchair or losing my sight. I can’t begin to imagine what that would be like. Perspective is everything and I’m genuinely grateful to be alive and able to do things like go hiking in Morocco when so many people can’t. It’s a privilege.

What did I learn?
That Moroccan food is delicious and is the rustic ‘non-processed’ diet is perfect for someone with a stoma. And I didn’t get food poisoning.
I learned that altitude and a stoma bag do not go well together. I’d found that my bag inflated when I was in the Himalayas, but nothing like this where it became a big problem, needing to empty and release air every few minutes. At 4200m altitude sickness overwhelmed me and was totally grim. It’s wasn’t just vomiting, it came with diarrhoea, which turned out to be a bit of a disaster. My bag inflated with air and huge amounts of output, popped off and there was a fountain of output everywhere. An interesting 20th wedding anniversary.

Over the years I’ve tested my wedding vows, but this was pushing it to the limit. Hubby had his hanky out to try and help, but we really needed a bucket. Anyway… long story short, the sudden altitude sickness meant my pouch could not cope with the output volume in such a short period of time. I can usually push through anything, but altitude sickness stopped me in my tracks and I found it incredibly frustrating.
I’m determined to try going to altitude again, possibly in the Rockies, but to try a larger pouch and find a way to empty regularly.

So I’ll end with 3 top tips if you want to do adventures and marathons when you have an ileostomy:

1. Develop a hydration strategy which is right for you. That might mean upping your intake of electrolyte fluids and drinking things like Dioralyte™. You need the right balance of sugar and
salt for a fluid to be absorbed. Don’t accept low energy levels, fatigue or nausea as normal. It’s likely due to dehydration. You can make a difference by choosing a different drink.

2. Pouch security is vital. If you don’t feel confident you’ll find it hard to live your life to the full! There are hundreds of products out there, so keep trying until you find one that really works for you. You’ll know you’ve got the right product if you can forget you’re wearing it.

3. Don’t think for one minute that your life is over when you have stoma. Be solutions orientated and find ways around problems rather than seeing barriers. Anything and everything is possible with the right mindset.

Sarah Russell Himalayas photo

Sarah Russell is an experienced fitness and health coach,

a mum of 2 teenage boys and has had an ileostomy since 2010.

 

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