Charity warns Brits suffering from little-known gut condition

Charity warns tens of thousands of Brits could be unknowingly suffering from little-known gut condition that’s mistaken for IBS

  • Microscopic colitis is affects 67,000 people in the UK and 700,000 in the US 
  • It is a form of inflammatory bowel disease, but cannot be seen by a camera
  • For diagnosis, a biopsy is needed so it can be looked at under a microscope 

Tens of thousands of Brits could be unknowingly suffering from a little-known gut condition that is often mistaken for IBS, a charity has said. 

Guts UK believes people are suffering unnecessarily because of a lack of awareness about microscopic colitis, a severe bowel condition which can leave patients going to the toilet ’30 to 40 times per day’.

Some 17,000 people are diagnosed with the condition each year in the UK.

But the charity believes that the real figure could be a lot higher due to high rates of misdiagnosis. 

It is also hard to detect as, 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.

Unlike other inflammatory bowel diseases, diagnosis of microscopic colitis 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, according to Guts UK.

Experts have also suggested people aren’t seeking help for symptoms because they are embarrassed. Others may be misdiagnosed with irritable bowel syndrome (IBS).

Once diagnosed, the condition is treatable with medication and lifestyle changes. In rare cases surgery might be needed.

Microscopic colitis leads to inflammation of the large bowel.

Diarrhoea, which can be sudden and cause the sufferer to wake up during the night, is the main symptom. It can also cause joint pain, extreme tiredness and bloating.

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‘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.’

Guts UK says cases of microscopic colitis are also on the rise, with levels now twice as high as they were at the end of the noughties.

Ms Harrington added that rates are likely to grow even further as the population ages, so identifying risk factors is crucial.

She said specific training for healthcare providers is needed, along with continuing to raise awareness and investing 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.

‘The good news is that effective treatments are available so people experiencing symptoms could benefit enormously by talking with their GP.’

One woman, 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.

What is microscopic colitis? 

Microscopic colitis is a form of inflammatory bowel disease (IBD) that affects the large bowel – the colon and rectum.

It is estimated that 67,000 people in the UK and 700,000 in the US are currently living with the disease.

You are more likely to get microscopic colitis if you are female and over the age of 50. However, one in four sufferers are under 25. 

In Microscopic Colitis, the walls of the bowel become inflamed. This can only be seen when a tissue sample from your colon is studied under a microscope. 

There are two types of microscopic colitis – lymphocytic and collagenous.

Lymphocytic is where the inner lining has more white blood cells than usual, while collagenous is where the lining has a thicker layer of collagen.

What are the symptoms? 

The main symptoms of microscopic colitis is watery diarrhoea which is occurring more than three times a day.

For some sufferers this can be as often as 15 times during the day and night.

The diarrhoea may:

  • Be sudden – you may not always reach the toilet in time  
  • Be explosive – where it is expelled with force due to the presence of gas
  • Happen several times a day and at night 

 Other symptoms include:

  • Pain in the tummy area 
  • Fatigue or extreme tiredness
  • Joint pain
  • Bloating and wind

What causes microscopic colitis?

It is not yet known what causes the disease but it is thought that a combination of factors trigger the immune system to attack healthy cell’s in the colon lining.

Triggers can include:

  • Damage to the lining of the gut – caused by a virus, bacteria or medicine 
  • Inherited genes
  • Smoking, being female or are over 50 years old 

How is microscopic colitis diagnosed?

A doctor will take a history of your symptoms, as some can be similar to irritable bowel syndrome.

Changes to the lining in microscopic colitis can only be seen under a microscope, so you will need to have a biopsy.

A small sample of tissue will be taken from your colon during a colonoscopy, then it will be looked at under a microscope. 

How is microscopic colitis treated? 

Treatment options include:

  • Medications 
  • Lifestyle changes – cutting down on caffeine and alcohol, stopping smoking
  • Surgery – this is very rare 

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