Harvey Gladwell is a 22-year-old triathlete, paramedic science student and global traveller. He also lives with a stoma – the result of a gruelling journey with ulcerative colitis, a form of inflammatory bowel disease (IBD).
Harvey is determined to show the world that having a stoma doesn’t stop you from achieving your goals, and to improve the lives of ostomates through his initiatives (reaching over 30,000 TikTok followers). We spoke with him to discover his remarkable stoma journey as part of our Diary of an Ostomate series. Read on to find out how he went from suffering with ulcerative colitis to smashing Ironmans!
Harvey’s health issues began when he was just 14. “I was going [to the toilet] 30 to 40 times a day, passing blood,” he said. His mum, who has Crohn’s disease, was concerned. “She was like, ‘I hope you don’t have Crohn’s.’”
The diagnostic process involved traumatic hospital scans, which revealed it wasn’t Crohn’s but a different form of IBD, ulcerative colitis. Read more: Why would you need a stoma?
“I started flaring more when I was 15 or 16, just before my GCSEs – it was pretty much every month. I was just passing more blood, mucus, and going to the toilet constantly.”
The prolonged use of steroids to treat flares had harsh side effects. “You get body dysmorphia because your body changes with the water retention, you’re constantly hungry, constantly tired,” he explained. “I remember just scoffing bags of sweets all the time and still not feeling full.”
Despite severe symptoms, Harvey tried to maintain a sense of normalcy through sport. “I was a regional-level triathlete and athletic captain at school. Competing gave me something to focus on – once you’re in a flare-up, it’s very easy to get yourself down. That was probably the best thing that kept me where I needed to be.”
But the emotional and physical toll was constant. “When you’re in between treatments, you want to find the answers quickly, but that entails lots of blood tests. You get horrible scar tissue so it hurts more and more. I’m very grateful that I don’t have to go through that now.”
“And when you’re on immunosuppressants, you’re constantly having coughs and colds – just constantly under the weather.”
Things worsened during the COVID-19 pandemic, just after Harvey turned 17. “I flared constantly for about three to four months,” he said. “I lost 10 kilos in two weeks. I couldn’t keep food down. I was going 40-50 times a day, just passing pure blood.”
Doctors started Harvey on a biologic drug, positioned as a miracle treatment for ulcerative colitis. “They gave me this speech – ‘this is going to sort you out, this is going to stop you having surgery.’ But it didn’t even touch the sides. I was too ill.”
Eventually, an emergency subtotal colectomy with an ileostomy was proposed. However, the surgeon refused, proving stoma stigma is still prevalent: “He said, ‘You’re not ill enough. You’re too young for this, you shouldn’t have a bag.” Instead, a temporary ileostomy was formed with the hope that resting the bowel would allow it to heal, and the stoma would be reversed in the future.
It didn’t work. Harvey became septic, developed pneumonia and had to undergo the full colectomy in an emergency operation. “They said it would take three or four hours tops, but it took over eight to cut everything out because it was just such a mess. I had to have two units of blood, then went into ICU for 10 days. I had 14 different tubes in.”
At his lowest, Harvey weighed just 35 kilos at six feet tall. “I had to learn to walk again. I couldn’t even hold my phone.”
After surgery, Harvey encountered a plethora of complications. He developed bilateral kidney stones, went into multi-organ failure and contracted MRSA and other infections. “It was one thing after another. But luckily, I’d recovered enough by then to fight off the infections, so it wasn’t a matter of life or death.”
Eventually, after 15 days on TPN and six and a half weeks in hospital, Harvey was discharged. He was determined to get back to normal as soon as possible: “Four weeks after coming home, I passed my driving test. I don’t really know how. But it gave me back some independence.”
And a couple of months later, he returned to college. “A teacher told me to drop out of A-levels – said I was on for a D and might as well give up. But I thought, the only way is up,” the ever-determined Harvey explained. “I passed. They weren’t the best grades, but I got into uni to study paramedic science.”
Remarkably, a year on from surgery, Harvey completed one of the most challenging physical feats in the world: an Ironman triathlon. “I told my mum in hospital, right after the big surgery, that I was going to do one. She said, ‘You’re on too much morphine to be serious.’ But the next day I said it again. ‘I don’t know how, I can’t even walk right now, but we’re going to do it!'”
He started with a half Ironman six months post-op, finishing second in his age group. A year after surgery, he completed the full Ironman: a 2.4-mile swim, 112-mile cycle, and a full marathon. “It took 15 hours and one minute. It was brutal – you get severely dehydrated with an ileostomy and you’re constantly drinking – but I’d do it again.”
He said he couldn’t even consider achieving something like this when he was so ill with ulcerative colitis.
Harvey is now thriving, his IBD in remission. He took a gap year before starting university so that he could travel the world.
This includes remote jungle areas in Laos and Thailand, where his stoma made itself known: “My stoma blocked in the jungle after eating a fermented egg as part of a village ritual,” he laughed. “I had to make myself sick. It was either getting out up or down, and it was 3 hours to the nearest hospital. Luckily, I slept on it and it cleared and I was good!”
He has also gained some clinical experience overseas: “I was lucky enough to go to Bali for five weeks to work in a paediatric clinic. I donated loads of my unused stoma supplies that I had accumulated. In the UK, you take it for granted how easy it is to get a prescription, but there, they’ll be going for 2 weeks without changing their bag, it’s so sad to hear.”
So, as a seasoned traveller, what advice would Harvey give? “At the airport, most of the time they’re pretty nice. You just need a stoma travel card or to ring the airport and tell them you need assistance,” he said. “I clip my bag with all my stoma items to my hand luggage and I just tell them it’s medical.”
“They might pat you down manually if you don’t want to go through the scanner. They’ll take you into a side room if that’s what you want.”
Remember to pack plenty and be mindful of the climate: “I always travel with more supplies than I need. In hot countries, bags peel off. You need to change them more often, sometimes twice a day with going swimming.”
“My stoma also swells in the heat, so I take my scissors with me and cut the baseplate to a bigger size. Sometimes I get sweat rashes around the bag, so I always take scalp lotion which does the trick.”
Read our guide for travelling with a stoma
We asked Harvey what advice he would give to new ostomates, and this is what he said: “Read positive stories and information from multiple sources. Ask your stoma nurse questions. But don’t take generic advice as gospel; everyone’s body is different. Like, some ostomates can eat nuts, others can’t. I can’t. Try new foods if you’re open to it, be engaged in the process of finding out what you can and can’t eat.”
He also added that small steps are key to recovery: “Walking was the thing that helped me get functioning again. You might only go 100 metres further than you did the day before, but that 100 metres is progress. That’s good for you both physically and mentally.”
He also emphasised that you shouldn’t worry about what others think. “If someone stares at you, you might as well stare back – or tell them ‘it’s a stoma and it saved my life’, which I find more fulfilling.”
He has a refreshingly positive outlook on life with a stoma: “You can do anything that a normal person can. You just might have to find a different way of doing it or take a bit more time to plan something, like a journey for example. But it’s the same with Crohn’s or Colitis, isn’t it? You’ve got to plan your journey around toilet stops.”
“Everyone remembers the bad times, but you should try to remember the good times. Yeah, it’s annoying to empty your stoma bag every 2-3 hours if you’ve got a high-output stoma, and you’ve got to keep your electrolytes up.”
“But it’s a lot better than being in pain. I can actually control my life. I’ve got a glorified portaloo attached to me. I can go anywhere – like you can just be talking to someone and it starts making noises – I just burst out laughing at this point!”
Between travelling and studying, Harvey has become an entrepreneur, designing a comfortable and affordable stoma support belt to reduce the risk of parastomal hernias.
“You’re at the highest risk of hernia after stoma surgery, but people don’t wear support belts because they find them uncomfortable. So I had a go at designing my own. It’s fully adjustable, doesn’t roll up, and has been tested during running, cycling, swimming, gym. I’ve got ambassadors, including a Canadian Paralympian, who wear it every day.”
Check out Harvey’s stoma support belts here.
He’s also currently working on a training module for paramedics about how to support patients with stomas, and wants to build more communities for ostomates. “I’m trying to create a group chat for 18 to 30-year-olds with stomas. I don’t really find there’s much out there for our age group.”
Harvey wants anyone who’s currently struggling to know that there is a light at the end of the tunnel. “I was on all different types of medication for my ulcerative colitis and I had all the side effects. But now, I’m in remission and I don’t struggle anywhere near as much. If anyone is in that boat, then please know it gets better.”
We’d like to thank Harvey for sharing his inspirational story with us and for everything he does for the stoma community. Would you like to feature on our platforms? Fill in our Contact Us form to let us know!
Laura’s story: Living with two stomas
Gabrielle’s story: Ileostomy surgery and beyond
Dan’s story: Living with an ileostomy to treat hereditary colon cancer