- IBDoc® Patient Support
As reported in the Daily Mail recently, misdiagnosis of IBS can have serious consequences.
Read the full article
With one in ten people thought to be affected by irritable bowel syndrome is it the GP’s go to diagnosis for any patients presenting with gut pain, bloating and diarrhoea? IBS can be triggered by a bout of food poisoning or antibiotics, but often there may be no obvious cause. Is it genetic, stress or anxiety related or can modern, hectic lifestyles and poor diet be blamed for the rise in IBS sufferers? Or, is the condition being over diagnosed resulting in other, more serious conditions being missed.
“A study by the University of Nottingham and John Radcliffe Hospital, Oxford, last year found that one in ten people with inflammatory bowel disease (IBD) – including Crohn’s and ulcerative colitis – were initially misdiagnosed with IBS.”
Other research also reports delays in diagnosis of serious digestive conditions. Pimentel et al. 1 found people could be symptomatic for years before diagnosis (a prodromal period of 7.7±10.7 years for CD and 1.2±1.8 years for UC), due to insidious onset as well as delays after presentation.
“Part of the problem is that IBS is a syndrome – a selection of symptoms – with no definitive test to rule it in or out. And because it’s so common, doctors tend to presume it’s to blame, especially in young people.”
The article goes on to cite many cases of patients initially diagnosed with IBS that were later found to have much more severe conditions. For two years James Hennessey, 33, suffered with constipation and discomfort across his lower abdomen. These were “treated” with laxatives and pain killers but on two occasions James was in such acute pain he went to A&E. Even then x-rays did not reveal the true cause of his problems. Being young the medical assumption was that James did not have anything too sinister. It was only when he saw a trainee GP who ordered a new test, a faecal calprotectin test, to check for an inflammatory marker for inflammatory bowel disease that a true diagnosis was instigated. James’ calprotectin reading was “off the charts”; this definitely wasn’t IBS. Flexible sigmoidoscopy revealed a tumour blocking 85 per cent of his bowel. James had surgery which was very successful and thankfully tests showed the cancer hadn’t spread. His standard blood tests were fine even on the day of surgery, and showed no signs of inflammation or cancer markers.
“I think the faecal calprotectin test should be more widely used and publicised – it’s not a test for cancer, but it saved my life.”
Other patients with long term IBS diagnoses, but persistent problems, report later discovering that they have a more defined inflammatory bowel disease. Jo Gordon, 45, returned from holiday in June 2012 with a nasty case a Campylobacter poisoning. However, the usual antibiotic treatment did not clear up her symptoms. Fluctuating bouts of diarrhoea and then terrible constipation led her GP to believe it was IBS, probably brought on by the tummy bug and stress.
“It made sense as when I ate anything, I’d have terrible cramps. I was put on Buscopan, an anti-spasmodic drug. It made me feel worse. I tried peppermint oil, peppermint tea and cutting down on fibre, but nothing helped.”
She lost a lot of weight and had multiple tests for everything from glandular fever, to lymphoma and even AIDS. Eventually one consultant identified that she has coeliac disease which had flared up as a result of the holiday bug. If this had been picked up when the symptoms started six months before, her condition would never have got as bad as it has. There’s no treatment apart from excluding gluten from her diet. Now that she’s doing that, the symptoms have improved, but she says she still doesn’t feel normal.
Liam Ruff is just 19 and his doctor told him he had IBS when he was 12.
“Four months after the symptoms started, I was referred to a paediatrician, who agreed it was probably IBS and advised me to cut out certain foods, such as dairy. There was no improvement. By then I was missing around a day of school every week as I was too tired or in too much pain. And I was losing weight rapidly – 2st in a year. It had a profound effect, especially as I was turning 13. I became a shy, skinny kid who didn’t take part in things. We went to the GP five or six times before I finally saw a gastroenterologist – almost a year after my symptoms began. After an endoscopy and a colonoscopy to examine my gut, I was told it was Crohn’s disease.
I went on steroids to reduce the inflammation and instantly started to feel better. I was going to the toilet less often and started regaining weight. In 2012, I had surgery to remove a small part of my bowel and had an ileostomy bag, which was reversed a year later. Since then I have been managing my problem with medication, although I do have the occasional flare-up. I’ve met lots of people with Crohn’s who were also originally told they had IBS. It’s frustrating, as the sooner you get treatment, the sooner you start feeling better. That was a year of my life that I’ll never get back.”
Simple non-invasive faecal diagnostic tests such as calprotectin and FIT (faecal immunochemical tests) can provide rapid indicators of more serious gastroenterological conditions. Such diagnoses could prevent years of pain, anxiety and potential long term damage for patients, whilst ensuring healthcare resources are directed most efficiently to manage these diseases.
1. Pimentel M, Chang M, Cho EJ, Tabibzadeh S, Kirit-Kiriak V, Targen SR, Lin HC (2000)
“Identification of a prodromal period in Crohn’s disease but not ulcerative colitis”. Am J Gastroenterol 95(12):3458-62.