Around 17,000 people in the UK are diagnosed with microscopic colitis every year, but this figure is believed to be much higher as the debilitating condition is often misdiagnosed as irritable bowel syndrome (IBS).
Microscopic colitis is an inflammation of the large bowel (colon) which can cause watery diarrhoea, stomach pain, fatigue and frequent trips to the toilet. According to the NHS, its name refers to the bowel looking normal during colonoscopy but when samples (biopsies) are taken, changes to the tissues can be seen under the microscope.
However, this step is not always completed, meaning many are left undiagnosed. Guts UK has highlighted that there is a lack of awareness around microscopic colitis, with many people suffering unnecessarily - and some even visiting the toilet '20 to 30 times per day'.
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The charity added that symptom awareness is crucial as the condition is often underreported - a previous study found that one-in-three patients with microscopic colitis were initially incorrectly diagnosed with IBS. Julie Harrington, chief executive of GutsUK, said: “It’s terribly sad that thousands of people are suffering with the debilitating symptoms of microscopic colitis.
“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."
She added: “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 highlighted the importance of identifying risk factors, raising awareness, providing specific training for healthcare providers, and investing in research to improve diagnosis and treatments.
Dr Sunny Raju, Academic Clinical Fellow in Gastroenterology and clinical researcher at the Sheffield Teaching Hospitals NHS Foundation Trust, highlighted the impact of the condition on people's work, social lives and relationships, as well as their overall wellbeing and self-esteem.
“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," he said.
Symptoms of microscopic colitis
People with microscopic colitis will often experience symptoms that resemble IBS, such as watery diarrhoea. Dr Raju suggested this is one of the 'key symptoms' to watch out for, adding: “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]."
He told the Independent: "Also, people will have nocturnal symptoms, so they’ll wake up in the night needing to open their bowels.”
The doctor warned that flare-ups can be unpredictable with “no clear pattern of any triggers”.
Other microscopic colitis symptoms include:
Fatigue
Nausea
Abdominal pain, cramps or bloating
Weight loss
Faecal incontinence
Dehydration
‘Flare ups’ alongside calmer phases.
Dr Raju explained that there are no “markers” that strike in stool samples and blood tests, and colonoscopy alone is not sufficient because “the bowel looks normal to the naked eye”.
The Mayo Clinic added: "The symptoms of microscopic colitis can come and go frequently. Sometimes the symptoms resolve on their own."
What causes microscopic colitis?
While the condition targets both men and women, Guts UK claims that women are more likely to be affected and this usually occurs later in adulthood. Those with coeliac disease and other autoimmune diseases face a greater risk of developing microscopic colitis.
And while the causes are not fully understood, Dr Raju explained: “We suspect it might be an interplay between the microbiome – the bugs/bacteria in the bowel – and maybe genetic factors and immunological factors.”
Certain medications are also believed to trigger flare-ups, such as 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, adding: “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.”
Treatment for microscopic colitis
Chris Probert, professor of gastroenterology at the University of Liverpool, said: "Undiagnosed microscopic colitis can cause years of unnecessary suffering.
"The good news is that effective treatments are available so people experiencing symptoms could benefit enormously by talking with their GP."
A low-fat and low-fibre diet is recommended, which may help to relieve diarrhoea. According to the Mayo Clinic, people might be better off avoiding any dairy, gluten, caffeine and sugar to minimise symptoms. Anti-inflammatory medication can also be prescribed, such as mesalamine.
