Justine had her appendix out. So why was she still in agony 20 years later?
SINCE she was a teenager, TV presenter J usti ne Gale had suffered bouts of stomach pain and diarrhoea which doctors put down to everything from irritable bowel syndrome to food poisoning.
She even had her appendix removed. Then last year Justine, 43, was struck by crippling stomach cramps and severe nausea during a holiday in America.
Over the next few days her joints swelled and locked, preventing her from walking, and the skin on her shins, calves, feet and palms became covered in red swollen patches.
Justine was in so much pain a friend drove her to the nearest hospital emergency department in Los Angeles.
‘I was given morphine to be able to cope with the pain of going to the toilet,’ she says. ‘I’m good at coping with pain but this was frightening.’
After eight days of pain, a test spotted the real cause of her episodes of ill health — Crohn’s disease; an incurable bowel condition.
Justine believes there had been clues that she may have had it for nearly three decades but numerous investigations here had never singled out Crohn’s.
Characterised by inflammation of the gut, most commonly the small intestine or lower bowel, Crohn’s can affect any part of the digestive system, from the mouth down (ulcerative colitis, another form of IBD or inflammatory bowel disease, affects only the colon and rectum).
Symptoms include diarrhoea, bleeding, fatigue and joint pain. The cause is not fully understood although it is thought genes play a role. What is known is that the right diagnosis is vital, as long-term inflammation can lead to scarring, bowel blockages and abscesses (build-ups of fluid and bacteria) which can require major surgery.
Aged 15, Justine had such an abscess but Crohn’s was still not considered. ‘After two weeks with severe pain, diarrhoea, vomiting and joint stiffness, I was admitted to hospital as an emergency,’ she says. ‘ An exploratory operation revealed a huge abdominal abscess, which was drained in hospital for ten days.
‘A few months later, doctors decided to do a routine appendectomy just in case the appendix had caused the abscess. No one mentioned inflammatory bowel disease as a possibility.’
WORRYINGLY, Justine is not alone in spending years with undiagnosed Crohn’s. About 20,000 people i n Ireland are recorded to be affected by IBD — Crohn’s and ulcerative colitis, but the true figure may be greater.
At least 3 per cent of sufferers are misdiagnosed for five or more years. Up to 10 per cent of all inflammatory bowel disease cases are first mistaken for the less serious irritable bowel syndrome (IBS), according to research by United European Gastroenterology.
One difficulty is that Crohn’s symptoms overlap with such conditions as IBS or coeliac disease, where the immune system reacts to gluten. Professor of gastroenterology Dr Alan Lobo says people delay seeking help because they put it down to other things.
‘Even when they report their symptoms, they may not be recognised,’ he says. ‘Abdominal symptoms are common; many experience them without there being a definite cause.’
Experts say Crohn’s can be ‘inactive’, often for years, which also makes a diagnosis more difficult.
After having her appendix removed, it was not until November 2008 that Justine, then 37, suffered another ‘flare-up’.
At that point she thought she had food poisoning because the people she had eaten with also had i t. While they soon recovered, Justine did not. ‘ It wasn’t right; I clearly wasn’t digesting food properly,’ she says.
After ten days, she saw her GP, who ran stool and blood tests and prescribed such IBS medication as peppermint oil tablets. Justine took them for a month or so with no effect. In January 2009, she had a colonoscopy, to look at the large bowel, and it found ulcers throughout her colon.
Doctors thought the results were inconclusive but could be caused by a type of inflammatory bowel disease.
There are no tests available to specifically diagnose Crohn’s. Instead, doctors make a diagnosis by evaluating a person’s symptoms and carrying out tests including X- ray and endoscopy to blood and stool tests. Justine was put on an ei ght- week course of me salamine , an anti- inflammatory, often the first treatment tried for mild to moderate inflammatory bowel diseases. It healed her ulcers and her s y mptoms improved but she was still not back to normal. Despite the successful treatment for inflammatory bowel disease, doctors told Justine she had irritable bowel syndrome.
Then, after three years of annual check-ups she was told she no l onger needed monitoring as the condition was stable. Justine says this l eft her ‘ surprised and concerned’.
‘While my stomach cramps had gone and my bowel habits had improved, they had not returned to what they had been. There didn’t seem anything else they could do,’ she says.
In Britain, patients in some hospitals with IBS symptoms are offered a faecal calprotectin test; a stool test which can distinguish between inflammatory bowel disease, such as Crohn’s, and IBS.
It cannot distinguish between t he t ypes of i nf l ammatory bowel disease, however, unlike the test in the US that led to Justine’s diagnosis.
KNOWN as the Prometheus Crohn’s Prognostic test, this is a specialised blood test that gives doctors comprehensive information about personal blood components and genetic make-up, which can determine whether a person has, or is likely to have, Crohn’s.
After returning from the US, Justine saw her GP and was referred to a consultant, who confirmed Crohn’s and prescribed steroids to reduce inflammation.
She also had surgery to drain an abscess. An infection then led to another emergency hospital admission and more surgery to treat an abscess and fistula (an abnormal passageway connecting one internal organ to another or to the outside of the body), thought to have developed after her flareup in the US.
Justine was referred to a gastroenterology team at King’s College Hospital in London and is now being treated by consultant Dr Bu’Hussain Hayee there.
He recommended a new drug Entyvio (vedolizumab), which targets inflammation in the gut, rather than suppressing the entire immune system, like other drugs used for Crohn’s.
‘It is the first treatment we’ve had that has a powerful effect on the disease without exposing people to serious side-effects,’ says Dr Hayee.
Justine has had six intravenous infusions of the drug, remains in remission and has come off the steroids.
‘Now I’m living a full, normal life just like anyone else without the condition,’ she says.