Tens of thousands of Britons could be suffering from a severe bowel condition without realising due to high rates of misdiagnosis and the complex way the condition is detected, a charity has said.
Some 17,000 people in the UK are diagnosed with microscopic colitis – a debilitating condition which leads to inflammation of the large bowel and can cause symptoms including stomach pain, fatigue and frequent trips use the toilet.
GutsUK says says that people are suffering unnecessarily due to a lack of awareness about the condition, which is often misdiagnosed as irritable bowel syndrome (IBS).
A previous study has shown that one-in-three patients with the condition were initially diagnosed with irritable bowel syndrome.
The charity says that 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. Once diagnosed, there is an effective treatment for most people as it called for more to be done to improve diagnosis rates.
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 GutsUK.
“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.
Ms Harrington added: “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.”
Chris Probert, professor of gastroenterology at the University of Liverpool, added: “Undiagnosed microscopic colitis can cause years of unnecessary suffering.
“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.”
GutsUK has created a new resource for patients to find out more about the condition.
What are the symptoms of microscopic colitis?
Symptoms can be similar to other gut conditions, such as IBS (which is not a form of IBD but can also cause wide-ranging and sometimes severe digestive issues). However, microscopic colitis does have some tell-tale characteristics that set it apart.
“One of the key things is the watery severity of diarrhoea,” said Dr Sunny Raju, Academic Clinical Fellow in Gastroenterology and clinical researcher at the Sheffield Teaching Hospitals NHS Foundation Trust. “People could sometimes be going up to 20 or 30 times a day [although for some it might be more like four to 10 times a day]. Also, people will have nocturnal symptoms, so they’ll wake up in the night needing to open their bowels.”
Another key thing, said Dr Raju, is that flare-ups can be unpredictable, with no clear patterns of any triggers. Anxiety around incontinence or not reaching a toilet in time is a big thing too, and some people may experience being caught short. Fatigue, nausea, stomach cramps and weight loss can also occur, and people tend to experience ‘flare ups’ alongside calmer phases.
What impact can microscopic colitis have on people?
Whether your diarrhoea is five times a day or 25, the impact can be hugely debilitating. “People won’t have much notice that they need to open their bowels, so they might say, ‘When I have a flare, I don’t leave the house, I can’t take public transport’,” said Dr Raju. This can impact greatly on people’s work, social lives and relationships, as well as their general emotional wellbeing and self-esteem, and their enjoyment of life and getting out and about.
What causes microscopic colitis and who gets it?
It occurs in males and females of all ages, but women are more likely to be affected and it mostly presents later in adulthood. People with coeliac disease and other autoimmune diseases are also more likely to develop microscopic colitis.
As Dr Raju pointed out, it’s not fully understood what causes it: “We suspect it might be an interplay between the microbiome – the bugs/bacteria in the bowel – and maybe genetic factors and immunological factors.”
There are also associations with certain medications, which doesn’t mean these medications necessarily cause microscopic colitis, but may trigger flare-ups in some people. This includes “medications like PPIs (Proton pump inhibitors), SSRIs (Selective Serotonin Reuptake Inhibitors), NSAIDS like Ibuprofen and some statins. In some patients, when they stop these medications, the diarrhoea stops too,” said Dr Raju. “Having said that, obviously you can’t just stop those medications without speaking to your doctor first. It’s also seen a bit sooner in smokers.”
How is microscopic colitis diagnosed?
It can only be diagnosed with biopsies, taken during a colonoscopy. Dr Raju said there are no ‘markers’ that will show up in stool samples and blood tests, plus a colonoscopy alone is not sufficient because “the bowel looks normal to the naked eye”.
