A young woman from North London has revealed how years of suffering with undiagnosed Crohn's disease led to a life-threatening bowel perforation, after she was initially misdiagnosed with an eating disorder.
A Childhood Lost to Unexplained Symptoms
Lucy Dare, now 21, first began experiencing debilitating symptoms at the age of 12. These included severe rectal bleeding, agonising abdominal pain, dramatic weight loss, and needing to use the toilet up to 15 times a day. The relentless fatigue and difficulty eating stole two years of her education, preventing her from sitting her GCSEs as she became too anxious to leave the house.
For years, neither Lucy nor her doctors could pinpoint the cause. At 13, her weight plummeted to just 38kg. Medical professionals, observing her low weight and symptoms like urgently needing the toilet after meals, concluded she was suffering from anorexia or bulimia. This led to a six-month inpatient stay at an eating disorder unit near her North London home.
The Fight for a Correct Diagnosis and Life-Saving Surgery
When her condition failed to improve, Lucy was finally referred for an endoscopy and colonoscopy. In 2019, these tests confirmed she had Crohn's disease, a chronic inflammatory bowel condition with no cure. However, her ordeal was far from over.
After a period of relative stability, Lucy's health catastrophically declined. Following a dinner out with friends, she was struck by excruciating pain. "I rushed to the toilet. I was just going to the toilet and vomiting non-stop," she recalled. Her vomit was brown, later confirmed to be faecal matter, and her diarrhoea was a "luminous green".
Her mother, Leza, 46, suspected a perforated bowel and severe infection (peritonitis) and demanded a CT scan. The scan confirmed her fears: Lucy's bowel had ruptured, a life-threatening emergency. She underwent a five-hour emergency operation where 60cm of her small intestine was removed.
"I was left to the point when I was actually dying to get any sort of help," Lucy stated. "If they sent me home the weekend my bowel perforated like they tried to, I would have died."
An Ongoing Battle for a Normal Life
Five years on from her diagnosis, Lucy's struggle continues. She has been unable to hold down a job, faces severe anxiety about leaving home, and is still searching for an effective medication to manage her chronic pain and digestive symptoms. She is currently deemed ineligible for Personal Independence Payment (PIP).
Lucy and her mother are now determined to raise awareness. "A lot of people, a lot of girls, especially, I think they get misdiagnosed with eating disorders. And it's wrong," said Leza. She warns that symptoms are often dismissed as period-related or psychological.
Pearl Avery, IBD Nursing Lead at Crohn's & Colitis UK, emphasised that Lucy's story is not unique. A quarter of people with Crohn's or Colitis wait over a year for a diagnosis. The charity urges anyone experiencing symptoms like blood in stools, severe stomach pain, unexplained weight loss, or urgent diarrhoea to use their online symptom checker and see a doctor promptly.
Lucy finds some solace in fitness, which she shares on Instagram (@liftwithlucyyy), saying it provides "clarity, control, and a sense of strength." However, her future remains uncertain as she awaits next steps following a recent diagnosis of gastritis, highlighting the complex, ongoing nature of her condition.
