Kirsty Heron drifted in and out of sleep as her TV played quietly in the background. She was exhausted after another restless night.
The 21-year-old picked up her phone and opened Instagram. She scrolled through the adverts from companies and posts of smiling friends. One had been on holiday, another at a music festival. They all looked so happy.
Kirsty should have been there with them. But life had become miserable since being diagnosed with ulcerative colitis – meaning she was set to spend another day crying in bed instead.
“I felt like my life had been put on hold,” Kirsty, from Swinton, told the Manchester Evening News.
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“For a young girl like me to have her life put on hold by an illness was upsetting. To be diagnosed with something you had never heard of before was scary.
“I was crying nearly every day because I thought I shouldn’t have to live my life like that at such a young age – waking up with no energy, not being able to eat or have fun.”
Ulcerative colitis is a long-term condition where the colon and rectum become inflamed. It can be painful, debilitating and can occasionally lead to severe complications.
Symptoms include diarrhoea, passing a small amount blood with stool, abdominal pain and cramping, rectal pain, urgency to defecate, inability to defecate despite urgency, weight loss and fatigue.
Kirsty, now 24, was diagnosed with the condition back in 2020. The admin worker was at home when she suddenly felt excruciating cramps – likening the agony to having a mouth ulcer in her stomach.
She had just climbed out of bed when she had the sudden urge to use the toilet. She then noticed a large amount of blood in the toilet bowl, prompting her parents to take her to hospital.
“I had no other symptoms,” Kirsty added. “It was a stinging pain, like when you have an ulcer in your mouth but it was in my stomach. I was losing quite a lot of blood. It was quite scary.”
At hospital, Kirsty learned her bowel was very inflamed and she had an emergency scan. A few days later, the results revealed she had ulcerative colitis.
Kirsty was given medication to help ease her pain and at first, the treatment appeared to be working.
However, the drugs caused her to go into anaphylactic shock a short time later, meaning her immune system had a life-threatening reaction to the treatment and she could no longer take it.
Over the next three years, Kirsty was offered a range of different medications, but her body rejected every single one of them.
She spent those three years stuck in a living nightmare – one that saw her unable to eat, sleep or leave the house in fear of not being near a toilet.
“I was in constant pain and I constantly felt tired,” Kirsty added. “I had no energy and I was scared of eating because every time I ate the stinging pain was horrendous. I was in and out of hospital because the flare-ups were so bad.
“I couldn’t go out and enjoy myself without worrying whether I would need the toilet or whether I would make it to a toilet. I was so drained from it all.”
Kirsty would spend all day and night going to the toilet, often going up to 20 times a day.
“I’d be up all night going to the toilet,” she added. “You think you’re going to sleep because you’re that tired but you don’t because you’re in constant pain. I was going to the toilet between 15 and 20 times a day.
“I would spend all day watching telly and having half-an-hour sleep here and there. I’d be woken up by the pain.
“Being 24 years of age, I felt like I should have been going out with my friends and family. I used to go to the gym a lot too – then nothing.”
Kirsty was rushed back to hospital in February this year after a particularly bad flare-up. After exhausting every medication option possible, doctors offered her a final solution to help ease her suffering.
Kirsty was given the option of a stoma bag, which involves making an opening on the abdomen which can be connected to the digestive system to allow waste to be diverted out of the body.
Desperate to get her life back, she jumped at the opportunity and had the surgery in April. “I met with the surgeons to discuss my options and at this point I was more than happy to have the surgery,” she added.
“I just wanted my life back. But I thought, ‘How am I going to wear my everyday clothes?’ thought people would see it. My anxiety was through the roof. I thought people were going to know I had a stoma.”
Kirsty was also offered a second bag, called a mucous fistula, which helps divert mucous out of her body.
The surgery instantly resolved Kirsty’s suffering and she describes it as the “best thing” she has ever done.
“Even though it’s been three weeks, I feel so much better,” she said. “I’ve been doing everything. I’m so happy to have my life back how it was three years ago before I got diagnosed.
“It's the best thing I’ve ever done. I’ve never felt better and I can start living my life as a young girl. Even if I have two stoma bags, I’m glad I’m not in pain anymore and I can go out and enjoy time with family and friends.
“I want more people to know about ulcerative colitis and Crohn’s disease and stoma bags - that even if you have a bag, it doesn’t stop you doing what you want to do.”
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