Microscopic colitis on the rise: Here’s what you need to know

The incidence of microscopic colitis, an Inflammatory Bowel Disease (IBD), has doubled in the UK from 2009 to 2016, according to the charity Guts UK.

While 17,000 new cases of microscopic colitis are diagnosed each year in the UK, the real number could be much higher, as this condition is often underreported and misdiagnosed.

This week marks Microscopic Colitis Awareness Week 2023, and a brand new resource aims to raise awareness of the little-known digestive condition.

What is Microscopic Colitis?

Microscopic colitis is an Inflammatory Bowel Disease that causes inflammation in the bowel, which leads to symptoms such as persistent, frequent, and watery diarrhea, waking in the night to empty the bowels, urgency to empty the bowel, stomach pain, fatigue, and weight loss. This group of diseases also includes Crohn’s disease and ulcerative colitis.

Diagnosing Microscopic Colitis:

While 17,000 new cases of microscopic colitis are diagnosed each year in the UK, the real number is thought to be much higher. Unlike Crohn’s disease or ulcerative colitis, microscopic colitis cannot be seen through an endoscopy. A small sample of tissue (a biopsy) has to be taken of the bowel and examined under a microscope. Unfortunately, this step is not always completed, so many people are left undiagnosed.

How Many People are Affected?

Scientists estimate that 67,000 people in the UK are living with microscopic colitis, or at least 1 in 1,000 adults. Despite the missed diagnoses, cases of microscopic colitis are on the rise globally. The UK incidence rate (number of new cases) in 2016 was twice what it was in 2009.

Personal Experience:

Caroline, from Cornwall, was misdiagnosed for years before finally being diagnosed with microscopic colitis.

Despite repeatedly seeking medical help for symptoms of stomach pain and watery diarrhea, Caroline was diagnosed with Irritable Bowel Syndrome (IBS) and her symptoms continued to worsen.

Eventually, Caroline was referred to a different hospital where she underwent a painful and unsuccessful colonoscopy before finally being diagnosed with microscopic colitis.

Caroline began treatment with steroids and while her condition has improved, she still experiences symptoms of diarrhea and fatigue.

One study showed that one in three people with microscopic colitis were initially misdiagnosed with IBS.

Caroline’s story highlights the importance of persistence and advocacy in seeking a correct diagnosis and treatment.

Diagnosis Means Treatment Can Finally Begin:

All three individuals mentioned above saw a significant improvement in their debilitating symptoms after beginning treatment. Victoria and Caroline were treated using gut-specific steroids, budesonide, and Pete with loperamide.

Julie Harrington, CEO of Guts UK, 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.

“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.”

Professor Chris Probert, Professor of Gastroenterology at the University of Liverpool said:

“Undiagnosed microscopic colitis can cause years of unnecessary suffering. The diarrhoea symptoms tend to be very severe and houselimiting 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.”

More here: https://gutscharity.org.uk/2023/04/microscopic-colitis-awareness-week-2023/