A nurse says her weight plummeted to just five stone while battling a painful and debilitating condition - but getting a stoma bag fitted was the “best thing” she has ever done. Katie Harpur, 25, dropped to just five stone while battling the painful symptoms of Crohn’s disease, which left her unable to walk, or eat without throwing up.
Katie, from Belfast, was diagnosed with Crohn’s in 2014 at the age of 16 after suffering with symptoms for two years. She was told it was inevitable that she would eventually need a stoma bag.
Katie was fitted with a temporary bag in 2019 before having an operation to make her stoma permanent in June 2022. She says it has changed her life, and she is now able to go on her dream trip away.
“I used to need to go to the toilet up to 30 times a day and I couldn’t go out and socialise for fear of there not being facilities nearby," she told PA. “It was incredibly limiting, and I was in a lot of pain to the point where I didn’t even want to go anywhere.
“I’d always wanted to travel but it was impossible for me to do so until I got my stoma bag fitted. Now I’ve booked my first long-haul flight to Tokyo, something I never would have been able to do before the op.”
Katie first started experiencing pain and nausea at the age of 14 but said doctors initially found it difficult to diagnose her. She said doctors first though she might be bulimic because of her sudden weight loss.
“I lost a dangerous amount of weight and weighed just five stone, but I didn’t have an eating disorder, it was just too painful for me to eat and if I did eat, I would vomit," Katie said. “I remember one doctor told me I was a hypochondriac, but I knew something wasn’t right.”
Persevering with medical appointments, Katie said her health deteriorated until she was admitted to hospital. Unable to walk, the then 16-year-old spent two weeks in hospital where she had a colonoscopy.
Katie said: “I couldn’t physically walk anywhere, I was so weak, and I ended up in hospital. The biopsies from the colonoscopy came back and confirmed that I had Crohn’s disease.”
Crohn’s disease is a lifelong condition where parts of the digestive system become inflamed. Symptoms include diarrhoea, stomach aches and cramps, blood in your poo, fatigue and weight loss.
Katie was put on medication but was told she would eventually need a stoma bag. In June 2019, Katie, then aged 21, underwent a procedure to have a temporary stoma bag fitted.
She said: “Going into it, I obviously had body image concerns because I’m still quite young and people tend to have a false idea that stoma bags are dirty. I knew I would end up with a giant scar too and that made me nervous.”
Despite the stoma bag being the solution to Katie’s painful symptoms, she suffered complications which led to her having the procedure reversed. Battling infections and prolapse, her stoma was removed in January 2020.
With her symptoms returning, Katie made the decision to have a permanent stoma bag fitted in June 2022.
She said: “Because there were so many issues with the first one, I was really nervous, especially as this stoma couldn’t be reversed. But my condition had gotten so bad and I was in so much pain, that this was really the only option for me at this point.”
As Katie approaches 12 months since her stoma op, she said the procedure has “changed her life”. With no complications or symptoms, she is now able to travel and socialise with friends.
“I’ve had no issues at all with it and it’s honestly the best thing I’ve ever done,” she said. “Growing up, I was so excited to travel but Crohn’s made it impossible. I always said I wouldn’t travel far until I had my stoma fitted.”
Since her op, Katie has booked a three-week trip to Tokyo for September this year, something she says she never would have been able to do before. “Not being able to speak Japanese, I would have found it very hard to find a public toilet so wouldn’t have been able to do the trip before," she said. “But now I’m planning to go to Mount Fuji and Super Nintendo World, which I’m really excited for.”
Now she is raising awareness for Crohn’s disease on World IBD Day and hopes to break the stigma around stoma bags.
“A lot of people think having a stoma bag is the end of the world,” she said. “I was so young getting mine done and I was nervous about how my body would change but it’s the best thing I’ve ever done, I wish I’d done it sooner.
“I hope people can see my experience and know that stoma bags aren’t scary, mine has greatly improved my life and enabled me to start enjoying life again.”
Sarah Sleet, chief executive of Crohn’s & Colitis UK, said: “There are more than 500,000 people living with Crohn’s and colitis in the UK. Every day we hear about more who are experiencing symptoms and waiting for a diagnosis.
"Since the pandemic, the already lengthy waiting times for tests like endoscopies and colonoscopies have soared. Such delays can be devastating for people, affecting their ability to work, study, socialise and live the lives they want to.
“We really need to do more to help young people stay in control of their health, and that means providing them with the tools to get the right diagnosis from their GP as early as possible.
“If you’re experiencing blood in your poo, tummy pain or frequent, urgent diarrhoea, then the symptom checker on our website is a good place to start. It’s designed to give people the confidence to go to their GP with a letter detailing their symptoms, to help them get the right diagnosis and get back on the road to recovery.”
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