More needs to be done to stop people suffering needlessly from a lack of awareness of a serious intestinal condition, a charity has warned.
Around 17,000 people in the UK are diagnosed with microscopic colitis each year, but Guts UK believes the true figure could be much higher due to high rates of misdiagnosis and the complex way in which the condition is detected.
Unlike other inflammatory bowel diseases, microscopic colitis cannot be seen on a camera and requires a tissue sample to be taken from the intestine and examined under a microscope.
Because this step isn’t always completed, many go undiagnosed, Guts UK said.
Experts have also suggested that people don’t seek help for symptoms because they’re embarrassed or, if they do, often misdiagnosed as having irritable bowel syndrome (IBS).
The charity said once diagnosed, there is effective treatment for most people as it called for more to be done to improve diagnosis rates.
Microscopic colitis is a debilitating condition leading to inflammation of the large intestine, it can cause symptoms including persistent watery diarrhea, stomach pain, fatigue, urgency to go to the bathroom, and waking up at night to empty the bowels.
An earlier study showed that one in three patients with the condition were initially diagnosed with irritable bowel syndrome.
The charity said previous estimates have suggested around 67,000 people may be living with the condition in the UK, with more women believed to be affected.
He said that despite misdiagnoses, cases are on the rise: In the UK, the incidence rate of microscopic colitis in 2016 was double that seen in 2009.
“It is terribly sad that thousands of people are suffering from the debilitating symptoms of microscopic colitis,” said Julie Harrington, managing director of Guts UK.
“Most people with this condition can be easily treated with a course of gut-specific steroids or symptom-relieving medications, but getting a diagnosis is the essential first step.
“People who live with the condition but without the benefit of a correct diagnosis and effective treatments can often feel very isolated due to the urgent nature of their symptoms and their need to be close to toilets at all times.
“We know this can also have a detrimental effect on their mental well-being.
“Rates of microscopic colitis are on the rise and will likely rise further as the population ages, so identifying risk factors, providing specific training for healthcare professionals, continuing to raise awareness and investing in research to improve diagnosis and treatment is critical.” “.
Chris Probert, professor of gastroenterology at the University of Liverpool, added: “Undiagnosed microscopic colitis can cause years of unnecessary suffering.
“Symptoms of diarrhea tend to be very severe and home-limiting, leading to considerable discomfort for patients.
“It is unclear why cases of the condition are on the rise, but it is likely due to a mixture of heightened awareness of symptoms leading to more diagnoses and environmental factors as a potential side effect of common prescription drugs such as some antidepressants.
“The good news is that effective treatments are available so that people experiencing symptoms can benefit enormously by talking to their GP.”
A woman, known only as Victoria, 33, from London, was diagnosed with microscopic colitis last year.
“I spent 12 years living with undiagnosed microscopic colitis,” she said.
“On my worst days, I would go to the bathroom 30 to 40 times a day and suffer from terrible stomach cramps.
“I ended up becoming agoraphobic because I was so distressed. I went to the doctor again and again but it took me all these years to get a correct diagnosis. I even went to the ER but was told it was “just IBS” and was sent home with no treatment plan.
“The treatment I received after receiving my diagnosis changed my life. I feel like I’ve regained some semblance of normalcy.”
Guts UK have created a new resource for patients to find out more about the condition.