Lucy spent six months in a North London eating disorder unit
A woman who missed out on her teenage years as she battled undiagnosed Crohn’s disease spent months in an eating disorder inpatient unit before her diagnosis, and needed 60cm of her bowel removed after a perforation left her vomiting faeces. Lucy Dare, 21, first started experiencing symptoms of Crohn’s disease when she was 12.
The first signs included rectal bleeding, severe abdominal pain, weight loss, fatigue, using the toilet up to 15 times a day, and difficulty eating, but neither she nor her doctors knew what was going on. 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, and 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. Doctors initially thought Lucy was experiencing an eating disorder, at 13 years old she 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 spent six months as an inpatient at an eating disorder unit near her home in North London, and when her symptoms hadn’t improved by the end of her stay, she was finally referred for an endoscopy and colonoscopy to explore the possibility of a physical illness. In 2019, it was confirmed she had Crohn’s disease but the battle was far from over.
After experiencing a perforated bowel and needing life-saving surgery, she is still struggling to find medication that works for her and can visit A&E several times a week due to her ongoing chronic pain and digestive symptoms. “It’s just been a lot of ups and downs,” Lucy told PA Real Life.
“I did have a job last year, but I lost it because I kept having time off all the time for Crohn’s. So I haven’t been able to work or anything. I don’t want to leave the house because of the pain and the anxiety.”
In 2019, after spending five months as an inpatient in hospital being tube fed, as anything she ate was being voided from both ends of her body, Lucy was admitted to an eating disorder unit due to her extreme weight loss and difficulty eating being attributed to a mental health issue.
“They thought it was an eating disorder, because I was 38kg,” she said. “Because I was such a low weight, and a young girl, they just assumed it was an eating disorder. They admitted me into an eating disorder unit, for six months to stay away from home.”
“It was really horrible,” she added. “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.”
In 2019, Lucy had a colonoscopy which diagnosed her with Crohn’s disease. She was prescribed infliximab and azathioprine, and put on the Modulen liquid diet to give her bowel a rest, so she couldn’t eat for six weeks – including her Christmas dinner.
After spending nearly a year in the hospital and the eating disorder unit, Lucy was able to get a weekend job in a hairdressers. After her first shift, she finally felt up to going out to see her friends, and she went for dinner at a local restaurant before going to her friend’s house for the evening.
Shortly after arriving at her friend’s house, however, Lucy started experiencing excruciating abdominal pain. “Suddenly, it just came on,” she said. “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. My mum had to come over to my friend’s house, pick me up and bring me down the stairs to go to A&E. Then they admitted me.”
For the first two days of her hospital stay, Lucy was told that since doctors couldn’t hear any unusual sounds from her stomach, it was likely “all in your head”, and perhaps it was food poisoning causing her sickness. “My mum was like: ‘No, there’s something wrong. You need to do a scan, she’s not OK’,” she said.
Lucy’s vomit was brown, which turned out to be faecal matter from her bowel, and her diarrhoea was a “luminous green” colour. Her mum, Leza, was concerned that her bowel had perforated and that she was experiencing peritonitis, a severe infection, and urged doctors to conduct a CT scan.
Indeed, the CT scan confirmed that Lucy’s bowel had perforated, 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. Lucy was told that following the surgery, she’d wake up covered in tubes and potentially even have a stoma, a surgical opening in the abdomen that allows bodily waste to be diverted into a stoma bag, and it was at this point that fear truly took hold.
“I was staying strong, but once they started saying all of that, that’s when I was scared, like, really scared,” Lucy said. “And then I just burst out crying.” Lucy wasn’t able to have a stoma, due to the location of the surgery, but during the five-hour operation 60cm of her small intestine was removed.
“I remember waking up in the ICU with tubes everywhere. I was so uncomfortable. I was really swollen,” she said. “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 was, thankfully, discharged just before the Covid pandemic took hold, so she was able to be with her mum and not be isolated in hospital. But recovery was far from easy. “The recovery was hard and it was long, just a long time of being uncomfortable and in pain,” she said.
Five years later, Lucy still has a long road ahead of her. It has “been a lot of ups and downs”, she said, as she hasn’t been able to work and is currently deemed ineligible to claim personal independence payment ( Pip ), struggles to leave the house due to her pain and anxiety, and is trying a variety of medications in the hopes that one of them will give her some relief.
She missed the last two years of school due to her illness, which cost her precious social time and education, and she faces severe anxiety around going out, the availability of toilet facilities, and the prospect of being suddenly struck with unbearable pain.
“Since starting treatment, things have actually got worse,” she confessed – though fitness, which she documents through her Instagram @liftwithlucyyy, “gives me clarity, control, and a sense of strength that the illness often challenges. When I was diagnosed, I had Crohn’s in my small bowel and upper GI tract. The last flare I had was pancolitis which was last year.
“The whole of my large intestines was inflamed. On Sunday, November 28, I had a duodenoscopy and they diagnosed gastritis, so we are now waiting for the next steps.”
Lucy and Leza feel it is essential to raise awareness of Crohn’s disease, and help stop other people from facing the battle Lucy fought to get a diagnosis. “We hadn’t even heard of Crohn’s before Lucy,” said Lucy’s mum Leza, 46. “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.”
Pearl Avery, IBD Nursing Lead at Crohn’s & Colitis UK, said: “Although Crohn’s and Colitis can strike at any age, you’re most likely to be diagnosed when you’re young. That’s a lot of lives put on hold – days off work and school, plans cancelled and time spent in hospital when you should be out there getting on with your life. Unfortunately, Lucy’s not alone in having had to wait a long time for a diagnosis – for a quarter of those with Crohn’s or Colitis it takes over a year to figure out what’s really going on. Lucy knew there was something wrong and pushed for answers. But at Crohn’s & Colitis UK we’ve just done a poll which told us that over half of young adults either don’t know much about Crohn’s and Colitis or have never heard of the conditions at all.
“So, if you’re reading this and you’ve had blood in your poo, agonising stomach pain, unexplained weight loss and frequent, urgent diarrhoea, for example – visit the symptom checker on the Crohn’s & Colitis UK website and go to a doctor. Don’t let embarrassment stop you from seeking help. The sooner you find out what’s going on, the better.”
