A woman who was misdiagnosed for three years and mistakenly sent to an eating disorder clinic claims doctors said her Crohn's disease symptoms were 'all in your head'.
She says medics even tried to tell her she had food poisoning, when it turned out she was vomiting fecal matter and had a life-threatening perforated bowel.
Lucy Dare, 21, first started experiencing rectal bleeding, severe abdominal pain, weight loss, fatigue when she was 12 and missed out on years of her childhood as a result.
She was using the toilet up to 15 times a day and had difficulty eating, but neither she nor her doctors knew what was going on at the time.
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Crohn’s disease, a long-term inflammatory bowel disease that currently cannot be cured, causes repeated flare-ups of symptoms including diarrhoea, stomach pain, anal pain, weight loss and blood or mucus in stools.
For years Lucy’s illness went undiagnosed. She missed two years of school and could not sit her GCSEs as her symptoms left her anxious about leaving the house, needing the toilet at school, experiencing severe abdominal pain and being unable to eat.
At 13 years old, Lucy weighed just 38kg and this, compounded by symptoms like needing to use the toilet urgently after mealtimes, led medical professionals to assume she had anorexia or bulimia.
She ended up receiving treatment at an eating disorder unit near her home in North London, UK, but her symptoms persisted.
Lucy was then referred for an endoscopy and colonoscopy to explore the possibility of a physical illness and was eventually diagnosed with Crohn's disease in 2019.
While she finally got the diagnosis she needed, Lucy's troubles were far from over and she's had a series of setbacks ever since.
At one stage of her health battles, Lucy experienced a perforated bowel and needing life-saving surgery, she is still struggling to find medication that works for her and can visit the emergency room several times a week due to her ongoing chronic pain and digestive symptoms.
The perforation left her vomiting feces.
Discussing the scary night she fell seriously unwell, Lucy recalled being at a friend's house one evening when she suddenly started experiencing excruciating abdominal pain.
"I rushed to the toilet. I was just going to the toilet and vomiting non-stop, just really coming out. I couldn’t walk or anything," she said.
"My mom had to come over to my friend’s house, pick me up and bring me down the stairs to go to A&E."
For her first two days in hospital Lucy was told that the illness was likely 'all in her head' but her mom, Leza, pushed for her to have a CT amid fears the then-teenager had a perforated bowel. Her brown vomit was later discovered to contain fecal matter.
Her mom's instincts turned out to be right and the scan confirmed that Lucy had a life-threatening condition where a hole forms in the intestine, allowing intestinal contents to leak into the abdomen, and she was immediately rushed into emergency surgery and had a stoma bag fitted.
Six years on from her diagnosis and Lucy and her mom are wanting to raise awareness about Crohn's disease.
Leza said: "We hadn’t even heard of Crohn’s before Lucy. A lot of people, a lot of girls, especially, I think they get misdiagnosed with eating disorders. And it’s wrong.
"Obviously periods as well, they put a lot of things down to that and body image, [being told] it’s in your head.
"And then you get left, and then it gets worse."
If you've been affected by this story and you're UK based, you can find out more information on support available via Crohn's & Colitis UK. Alternatively, if you're in America you can find additional details on the Crohn's and Colitis Foundation website.
Niamh Shackleton