Woman Fights for Answers After Misdiagnosis of Crohn’s Disease

A young woman suffered severe health issues for years due to an undiagnosed case of Crohn’s disease, ultimately resulting in life-threatening complications. Lucy Dare, now 21, began experiencing alarming symptoms at the age of 12 but faced delays in diagnosis that severely impacted her life.

Lucy’s journey started with symptoms including rectal bleeding, intense abdominal pain, significant weight loss, and frequent trips to the bathroom. Despite these serious indicators, both Lucy and her healthcare providers struggled to identify the underlying cause. Crohn’s disease is a chronic inflammatory bowel disease characterized by flare-ups that can lead to various debilitating symptoms, including diarrhea and abdominal discomfort.

For years, Lucy’s difficulties were misinterpreted as an eating disorder. By the time she was 13, her weight had dropped to just 38 kg, leading doctors to suspect anorexia or bulimia. Lucy spent six months in an eating disorder unit in North London, during which time her physical condition continued to deteriorate.

Finally, in 2019, after a colonoscopy and endoscopy, Lucy received a diagnosis of Crohn’s disease. Her battle was far from over. Following a severe bowel perforation that required urgent surgery, she had 60 cm of her small intestine removed. Lucy described the moment of her diagnosis as overwhelming, recalling how she felt when informed about the potential need for a stoma.

“I was staying strong, but once they started saying all of that, that’s when I was scared,” she said. “And then I just burst out crying.” Fortunately, she did not need a stoma, but the surgery was only the beginning of a long recovery process.

Lucy spent nearly a year in hospitals and treatment facilities, unable to partake in normal teenage activities. She missed critical educational opportunities, including her GCSEs, due to her health struggles. “I haven’t been able to work or anything,” she noted, highlighting the psychological toll of her condition. “I don’t want to leave the house because of the pain and the anxiety.”

After her release from the hospital just before the onset of the Covid-19 pandemic, Lucy faced a challenging road to recovery. Despite being discharged, she continued to experience chronic pain, leading to frequent visits to emergency services.

Lucy’s mother, Leza Dare, has been a crucial support system throughout this ordeal. “We hadn’t even heard of Crohn’s before Lucy,” she stated, emphasizing the need for greater awareness around the disease. “A lot of girls, especially, I think they get misdiagnosed with eating disorders. It’s wrong.”

The ongoing challenges of living with Crohn’s disease have led Lucy to explore various treatment options, with mixed results. She continues to document her fitness journey on Instagram, using it as an outlet to gain control over her health. “Fitness gives me clarity, control, and a sense of strength that the illness often challenges,” she explained.

Pearl Avery, IBD Nursing Lead at Crohn’s & Colitis UK, highlights the importance of awareness and early diagnosis. “Although Crohn’s and Colitis can strike at any age, you’re most likely to be diagnosed when you’re young,” she stated. Avery noted that many individuals, like Lucy, experience significant delays in diagnosis, with a quarter of patients waiting over a year for answers.

Individuals experiencing symptoms such as blood in stools, severe stomach pain, or unexplained weight loss are urged to seek medical attention. Crohn’s disease remains a significant challenge for many, and increasing awareness is essential to prevent further misdiagnosis and suffering.

Lucy’s story reveals the critical need for prompt and accurate diagnosis, and she and her mother are committed to raising awareness about Crohn’s disease. They hope to ensure that others receive the help they need before their condition escalates.