A young woman from North London has revealed the harrowing nine-year battle she faced to receive a correct diagnosis for Crohn's disease, a struggle that culminated in life-saving emergency surgery after her bowel perforated.
A Painful Journey Begins at Age 12
Lucy Dare, now 21, first began experiencing severe symptoms at just 12 years old. Her life became dominated by rectal bleeding, crippling abdominal pain, dramatic weight loss, extreme fatigue, and needing to use the toilet up to 15 times a day. She also found eating increasingly difficult.
For years, the root cause of her suffering remained a mystery, not just to her but to the doctors she consulted. Crohn's disease is a chronic inflammatory bowel condition with no current cure, characterised by flare-ups involving diarrhoea, stomach pain, and blood in stools.
Misdiagnosed with an Eating Disorder
At 13, Lucy's weight had plummeted to just 38kg. This, combined with symptoms like urgently needing the toilet after meals, led medical professionals to believe she was suffering from anorexia or bulimia. She was admitted as an inpatient to an eating disorder unit near her North London home for six months.
"It was really horrible," Lucy recalled. "There were girls in there self-harming, ripping tubes out, getting restrained, and I was just there in pain. I was confused about what was going on, why I was there, because I didn't feel how they felt."
When her symptoms showed no improvement by the end of her stay, she was finally referred for an endoscopy and colonoscopy. In 2019, the colonoscopy provided the answer: Crohn's disease.
Treatment and a Life-Threatening Crisis
Lucy was prescribed the medications infliximab and azathioprine and placed on a Modulen liquid diet for six weeks to rest her bowel. After nearly a year in hospital and the eating disorder unit, she secured a weekend job at a hairdressers. Following her first shift, she went out with friends, but shortly after arriving at a friend's house, she was struck by excruciating pain.
"I rushed to the toilet. I was just going to the toilet and vomiting non-stop," she said. Her mother had to carry her to A&E. For two days, doctors suggested it was "all in your head" or food poisoning, despite Lucy vomiting brown faecal matter and having luminous green diarrhoea.
Her mother, Leza, fearing a perforated bowel and peritonitis, insisted on a CT scan. The scan confirmed her bowel had perforated, a life-threatening emergency. Lucy was rushed into a five-hour operation where 60cm of her small intestine was removed. She was told she might wake with a stoma bag.
"I was left to the point when I was actually dying to get any sort of help. If they sent me home the weekend my bowel perforated like they tried to, I would have died," Lucy stated.
An Ongoing Battle for Relief
Discharged just before the Covid pandemic, Lucy faced a long and difficult recovery. Five years on, her road remains challenging. She has been unable to work, struggles to leave the house due to pain and anxiety, and is trying various medications for relief.
"Since starting treatment, things have actually got worse," she confessed. She missed two years of school and now faces severe anxiety about going out. Fitness, which she shares on Instagram @liftwithlucyyy, provides her with crucial "clarity, control, and a sense of strength."
Her most recent tests on Sunday, November 28, diagnosed gastritis, and she awaits next steps. Lucy and her mother are now determined to raise awareness. Pearl Avery, IBD Nursing Lead at Crohn's & Colitis UK, said over half of young adults know little or nothing about the conditions. She urged anyone with symptoms like blood in their stool or agonising stomach pain to use the charity's online symptom checker and see a doctor without delay.
