Inflammatory bowel disease triggers and symptoms as 67,000 may be living with severe condition

Thousands of people may be suffering from an undiagnosed or misunderstood bowel condition, a charity has warned.

Some 17,000 are diagnosed with microscopic colitis each year in the UK but the real figure could actually be much higher, Guts UK says.

Microscopic colitis is an Inflammatory Bowel Disease (IBD) that affects the large colon and can cause persistent watery diarrhoea, stomach pain, fatigue, urgency to go to the toilet and waking in the night to empty the bowel.

It is thought that many people could be living with the condition without knowing, as some standard tests for inflammatory bowel conditions do not detect it.

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. As this step is not always completed, many people are left undiagnosed, according to Guts UK.

Experts have also suggested that people are not seeking help for symptoms because they are embarrassed, while those who do visit their GP are often misdiagnosed with irritable bowel syndrome (IBS) - a previous study found this was the case among one-in-three patients with the condition.

One woman, known only as Victoria, 33 from London, was diagnosed with microscopic colitis last year after spending 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.”

The charity said that previous estimates have suggested some 67,000 people could be living with microscopic colitis in the UK, with more women thought to be affected. It said that, despite misdiagnoses, cases are on the rise and warned the incidence rate in the UK in 2016 was twice that observed in 2009. It is now calling for more to be done to improve diagnosis rates, as once the condition is detected it can be effectively treated in most cases.

Julie Harrington, chief executive 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.”

What are the symptoms of microscopic colitis?

Symptoms of microscopic colitis can vary from person to person, but the main sign is ongoing watery diarrhoea, according to Crohn’s and Colitis UK. The symptom is considered “ongoing” if you pass watery or loose poo - usually without any blood - more than three times a day for longer than four weeks. Other common signs can include:

• pain or cramps in the tummy area
• fatigue or extreme tiredness – this may be caused by getting up at night to go to the toilet, but many people experience this regardless
• joint pain
• bloating and wind
• weight loss

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 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.”

What are the triggers?

It is unclear what causes inflammatory bowel diseases, including microscopic colitis, but it is thought to be a combination of factors that trigger the body’s immune system to attack healthy cells in the colon. Crohn’s and Colitis UK and the NHS says this can be due to:

• genetics - you are more likely to get IBD if you have a close relative with condition
• damage to the lining of the gut, which may be caused by viruses, bacteria or certain medicines
• a problem with your immune system
• smoking - people who smoke are twice as likely to get Crohn’s disease than non-smokers
• age and gender

How is it treated?

Treatment aims to relieve IBD symptoms and prevent them from returning. This can include following specific diets, making lifestyle changes, taking medicines or undergoing surgery, although the latter is rarely needed. Some lifestyle and diet changes include reducing alcohol and caffeine consumption to help prevent diarrhoea, while quitting smoking is also likely to ease symptoms.