Imperial College London

Long delays for diagnosis of ulcerative colitis and Crohn's disease

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A new study has found one in ten people with inflammatory bowel disease visited their doctor with symptoms five years before receiving a diagnosis.

Inflammatory bowel disease is a term used to describe two main conditions, ulcerative colitis and Crohn’s disease, and is thought to affect around 300,000 people in the UK. The condition causes inflammation in the gut, and can trigger symptoms such as diarrhoea, abdominal pain and rectal bleeding.

We found many people live with Crohn's disease or ulcerative colitis for years before being diagnosed Dr Jonathan Blackwell Study author

In the new study, published in the Journal of Crohn’s and Colitis, researchers at St George's, University of London, Imperial College London, University College London and King’s College London, studied the records of 19,000 people in England with ulcerative colitis and Crohn’s disease between 1998-2016.

The results revealed some patients experienced gastrointestinal symptoms up to 10 years before they were diagnosed, while 10 per cent of patients visited their doctor with symptoms five years before being diagnosed. The condition is diagnosed through a variety of blood and stool tests, as well as examinations.

The team explained the delayed diagnosis may be due to the symptoms being mistaken for other conditions, such as irritable bowel syndrome and haemorrhoids.

Over a year wait for specialist appointment

The findings also revealed that among people with gut symptoms lasting more than six weeks, fewer than half were reviewed by a specialist within 18 months.

Furthermore, people with persistent gut symptoms who had previously been diagnosed with irritable bowel syndrome or depression waited 25 per cent longer to be reviewed by a specialist.

However the team point out that the waiting time for a specialist appointment has reduced significantly between 2003 and 2016.

Any delays in diagnosis and referral will likely be exacerbated during the COVID-19 pandemic Professor Sonia Saxena Study author

Dr Jonathan Blackwell, lead author of the research from St George’s, University of London and honorary research fellow from Imperial’s School of Public Health said: “We found many people live with Crohn’s disease or ulcerative colitis for years before being diagnosed. If you are experiencing abdominal pain, diarrhoea or rectal bleeding which isn’t getting better, see your doctor and discuss testing because there may be a treatable cause."

Professor Sonia Saxena, co-author of the research and Professor of Primary Care at Imperial’s School of Public Health added: “Any delays in diagnosis and referral will likely be exacerbated during the COVID-19 pandemic. Not only are patients reluctant to visit their GP surgery at the moment, but the waiting time to see consultants may be longer than usual, as COVID-19 response and treatment is being prioritised by the NHS.” 

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'Prevalence and duration of gastrointestinal symptoms before diagnosis of Inflammatory Bowel Disease and predictors of timely specialist review: a population-based study' is published in the Journal of Crohn's and Colitis 

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Kate Wighton

Kate Wighton
Communications and Public Affairs

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