Doctors were certain I was anorexic. In fact, I was one of thousands with Crohn's
Last updated at 12:59 AM on 14th February 2012
Looking back at teenage photos, Fiona Argo can barely recognise herself as the young woman with jutting collarbones and stick-thin legs. But she can see why concerned friends and family thought she was in the grip of an eating disorder.
Between the ages of 16 and 19, Fiona’s weight plummeted from 9 stone to just 5st, extremely underweight for her 5ft 5in frame. Her periods stopped and her weight was so dangerously low she was told she was at risk of heart failure and even death.
She was diagnosed with anorexia and hospitalised. But while the diagnosis seemed obvious to doctors, friends and family, Fiona remained adamant she was not anorexic.
Drastic weightloss: Fiona is a normal weight now, left, but had been painfully thin as a teenager
‘I always knew I was experiencing a physical reaction to eating, not a mental one,’ she says. ‘Every time I ate I’d suffer crippling stomach cramps and end up being sick after most meals. I’d never suffered from negative body image and didn’t want to lose weight, so I knew I didn’t have an eating disorder.’
But despite Fiona’s protestations, her doctor did not run tests to establish whether she had an undiagnosed medical condition, instead interpreting her constant denials as secrecy, a trait often exhibited by anorexia sufferers.
It was only when Fiona collapsed in agony in January 2004, aged 19, and was rushed to hospital that doctors discovered she was suffering from Crohn’s disease, a chronic bowel disorder that affects the gastrointestinal tract.
The disease is thought to affect at least 60,000 Britons and usually manifests itself between the ages of 15 and 25. No one knows what triggers it, but it causes inflammation of the gut wall. Symptoms typically include diarrhoea, vomiting, weight loss, tiredness and anaemia. There is no cure, and many sufferers will require surgery to remove diseased areas of the bowel at some point in their life.
Weight loss is a common symptom of Crohn’s disease, which is why it is often mistaken for other conditions such as irritable bowel syndrome, says Dr Ian Shaw, consultant gastroenterologist at Gloucester Royal Hospital.
'The specialist wrote to my
parents insisting there was “nothing physically wrong” with me and it
was all in my head. I felt trapped in a nightmare in which no one was
listening to me'
‘The weight loss is caused by a number of factors — poor absorption of nutrients due to an inflamed bowel, reduced food intake by patients to try to avoid symptoms such as pain and diarrhoea, and increased energy consumption as the body fights inflammation.
‘It doesn’t surprise me that Crohn’s could be mistaken for an eating disorder because weight loss is a key symptom in both.’
Unfortunately in Fiona’s case, an ulcer had formed on her small intestine two years before diagnosis, which then perforated, causing the contents of her stomach to leak. She believes this was caused because her condition was untreated for so long.
She had to undergo emergency surgery to repair the damage and, three years later in 2007, she was awarded 40,000 compensation in an out-of-court settlement from one of the specialists who had failed to spot her Crohn’s.
So convinced was she that Fiona had anorexia that she hadn’t tested her to see if she was suffering from another medical condition.
‘Early diagnosis is important,’ says Dr Shaw. ‘The sooner the disease is treated the less likely the patient is to have complications.’
Fiona has paid the price for her years of misdiagnosis.
Misdiagnosis: Fiona with her mother, Jacqui, who was advised to watch her daughter for signs of an eating disorder
‘Every day is an uphill struggle, and I’ll never forgive the doctors for getting it so terribly wrong,’ says Fiona, now 27, who lives with her partner Simon, 30, in St Peter Port on Guernsey.
‘Sadly, Crohn’s is an illness with no cure, but I probably wouldn’t be this ill today if it had been detected earlier. Though I’m a normal weight, I’m often in pain and still struggle to keep food down. These are symptoms I’d suffer anyway, but are worse because the Crohn’s was allowed to progress.
‘I have to eat several small meals a day because large amounts of food leave me in agony, and I also need to take daily medication.
‘It makes me angry that doctors could have given me a simple stool test or blood test, yet they chose to ignore my symptoms and told me I had a psychiatric illness.’
Fiona’s nightmare started in 2001 when she suddenly started losing weight, dropping from 9 stone to just 7st in a less than a year.
‘My mum and dad realised something was wrong when I started eating smaller portions at dinner, and they thought I was making excuses. But I couldn’t eat a full meal without pain and vomiting afterwards,’ she says.
In March 2002, when she weighed just under 8st, Fiona’s worried mother Jacqui took her to a local GP, who immediately diagnosed anorexia.
'Every day is an uphill struggle, and I’ll never forgive the doctors for getting it so terribly wrong'
Other GPs at the practice and a bone specialist confirmed this diagnosis.
‘I told the doctors that I found eating extremely painful, and that I didn’t want to be this way, but they clearly didn’t believe me,’ says Fiona.
‘One doctor told my mum I was in denial, and that it was a classic symptom of anorexia. They even told my mum the tricks to watch out for, such as hiding food under the table or slipping off to the bathroom to make myself sick after meals. I wasn’t anorexic, but I don’t blame my parents for thinking I was. I looked really ill.’
Over the next two years, Fiona’s weight dropped further, and by the age of 18 she weighed just 6st. That was when the GP referred her to a bone specialist, thinking the pain may be due to a bad back, but again she hit a brick wall.
‘The specialist wrote a letter to my parents insisting there was “nothing physically wrong” with me and it was all in my head. I felt trapped in a nightmare in which no one was listening to me.
Moving on: Fiona is happy she is now getting treatment for Crohn's but is angry her illness went unnoticed for so long
‘My relationship with my parents became strained, too. In the end we went to family therapy, but as the cause wasn’t emotional it wasn’t that helpful.’
By January 2004, Fiona’s weight had dropped to just 5st, dangerously low for her height, and she was admitted to a psychiatric hospital, where doctors force-fed her small meals, but her stay was cut short on the third day when she collapsed in agony.
It was only then that hospital doctors discovered Fiona had suffered a perforated ulcer on her small intestine. Further blood tests revealed she was suffering from advanced Crohn’s disease.
Septicaemia had started to set in and Fiona underwent emergency surgery that same day.
‘For a while it was touch and go, and my dad still can’t speak about my time in hospital without getting upset.’ Thankfully, Fiona made a good recovery and was discharged from hospital two weeks later.
‘My intestines had been blocked because a symptom of Crohn’s is a narrowing of the intestinal tract, but the doctors removed the damaged section of my bowel.
‘Suddenly I could eat properly again — it was a revelation. My parents kept apologising for not believing me. In less than a month, I gained more than a stone.’
There is a simple, non-invasive test that can help diagnose Crohn’s disease even in the early stages of the illness, which could have prevented Fiona’s ordeal.
‘If a doctor suspects Crohn’s, they can carry out a faecal calprotectin test early on, which will show any inflammation in the bowel,’ says Dr Shaw.
‘Crohn’s is a long-term chronic disease that needs to be controlled and half of patients will need an operation at some point. But there is evidence that early diagnosis can avoid complications and the risk of surgery is likely to be reduced.’
Earlier this month, Fiona underwent a fourth operation to remove part of her bowel, and is now in recovery.
‘I don’t know how many more operations I’ll need or if I’ll end up with a colostomy bag, but I try not to think about it,’ she says. ‘I’m moving on with my life, but I hope no one else has to experience what I went through.’
For more information, visit the National Association for Colitis and Crohn’s Disease (NACC), crohnsandcolitis.org.uk