More must be done to stop people suffering unnecessarily due to a lack of awareness about a severe bowel condition, a charity has warned.
Some 17,000 people are diagnosed with microscopic colitis each year in the UK but Guts UK believes the real figure could be a lot higher due to high rates of misdiagnosis and the complex way 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 bowel and examined under a microscope.
Because this step is not always completed, many are left undiagnosed, Guts UK said.
The charity said that once diagnosed, there is an effective treatment for most people as it called for more to be done to improve diagnosis rates.
Microscopic colitis is a debilitating condition which leads to inflammation of the large bowel, it can cause symptoms including persistent watery diarrhoea, stomach pain, fatigue, urgency to go to the toilet and waking in the night to empty the bowel.
A previous study has shown that one-in-three patients with the condition were initially diagnosed with irritable bowel syndrome.
The charity said that previous estimates have suggested that some 67,000 people could be living with the condition in the UK, with more women thought be affected.
It said that, despite misdiagnoses, cases are on the rise – in the UK incidence rate of microscopic colitis in 2016 was twice that observed in 2009.
“It’s terribly sad that thousands of people are suffering with the debilitating symptoms of microscopic colitis,” said Julie Harrington, chief executive of Guts UK.
“Most people with the condition can be easily treated with a course of gut-specific steroids or with symptom-relieving medicines but getting a diagnosis is the first, essential step.
“People living with the condition but without the benefit of a correct diagnosis and effective treatments often can often feel very isolated due to the urgent nature of their symptoms and their need to be near to toilet facilities at all times.
“We know that this can also have a detrimental effect on their mental wellbeing.
“The rates of microscopic colitis are increasing and are likely to grow further as the population ages, so it’s crucial that we identify risk factors, provide specific training for healthcare providers, continue to raise awareness and invest in research to improve diagnosis and treatments.”
“The diarrhoea symptoms tend to be very severe and house-limiting, leading to considerable distress for patients.
“It’s not clear why cases of the condition are on the increase but it is likely to be due to a mixture of increased awareness of symptoms leading to more diagnoses and environmental factors such as a potential side effect of common prescription drugs such as some antidepressants.
“The good news is that effective treatments are available so people experiencing symptoms could benefit enormously by talking with their GP.”
One women, known only as Victoria, age 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 was going to the toilet 30 to 40 times per day and suffered from awful 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 A&E but was told it was ‘just IBS’ and I was sent home with no treatment plan.
“The treatment I have received after getting my diagnosis has changed my life. I feel like I’ve regained some semblance of normal.”
Guts UK has created a new resource for patients to find out more about the condition.