Microscopic Colitis Awareness Week 2023

Microscopic Colitis Awareness Week 2023 (17-23rd April):

The incidence (number of new cases) of microscopic colitis has doubled from 2009 to 2016.

Although 17,000 new cases of microscopic colitis are diagnosed each year in the UK, the real number could be a lot higher, as microscopic colitis is often underreported and misdiagnosed. Our brand new resource raises awareness of the little-known digestive condition.

What is microscopic colitis?

Microscopic colitis is an Inflammatory Bowel Disease (IBD). This group includes Crohn’s disease and ulcerative colitis too. As microscopic colitis causes inflammation in the bowel, symptoms include:

• Persistent, frequent and watery diarrhoea
• Waking in the night to empty the bowels
• Urgency to empty the bowel
• Stomach pain
• Fatigue
• Weight loss

Diagnosing microscopic colitis:

There are 17,000 new cases of microscopic colitis diagnosed each and every year. But the real number is thought to be much higher.

As our new resource explains, microscopic colitis cannot be seen when you have an endoscopy (a camera looking at your digestive system), but in Crohn’s disease or ulcerative colitis, the inflammation may be seen.

In microscopic colitis, 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 are living with microscopic colitis in the UK (or at least 1 in 1,000 adults). 17,000 cases are diagnosed each year in the UK, but the real number could be much higher, as microscopic colitis is underreported and misdiagnosed. One study showed that 1 in 3 people with microscopic colitis were initially incorrectly diagnosed with Irritable Bowel Syndrome (IBS).

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.

“I lived for 12 years with an undiagnosed condition, with no treatment”

Victoria was diagnosed with microscopic colitis in August 2022, after 12 years managing an undiagnosed condition.

“On my worst days, I went to the toilet 30 to 40 times per day with watery diarrhoea. I’d often wake in the night to empty my bowels. I felt more tired than I’d ever felt in my life and completely hopeless”. Read Victoria’s full journey here.

“I’ve experienced what it’s like to mess yourself and experience incontinence, you may feel like you don’t want to mention it to anyone.“

Pete was diagnosed with microscopic colitis after his GP had put him on the cancer pathway for bowel cancer.

“It was a relief to get a definitive diagnosis, knowing something was not quite right and I could now put a name to it. My advice is don’t be embarrassed, be on the safe side and have it checked out. My hope is that people will be given an accurate diagnosis”. Read Peter’s story here.

“My friend watched me crawling out of the bathroom and said, ‘I really think you need to go back to your doctor'”.

Caroline has memories in primary school, crying on the toilet with a sore stomach, but she wasn’t diagnosed with microscopic colitis until she was in her 20’s.

“The thought of people going through what I did, misdiagnosed and struggling makes me so sad. I want to try and help as many people as I can get the correct diagnosis and treatment. We know our bodies and we know when something isn’t right”. Continue Caroline’s story here.

Diagnosis means treatment can finally begin:

Caroline, Victoria and Peter all saw a significant improvement in their debilitating symptoms after they began treatment. Victoria and Caroline were treated using gut-specific steroids, budesonide, and Peter loperamide.

“Since diagnosis, I’ve had two courses of budesonide which has allowed me to function again. Though my toilet habits are still not ‘normal’ by other people’s definition, I feel like I’ve regained some semblance of normal.” – Victoria.

How can I help?

• You can help reach those suffering in silence and alone. Please consider donating £3 a month to Guts UK. Thank you.
• Share far and wide! This week we will be spreading awareness across all our social media channels. Scroll to the bottom of this article to discover our socials and spread the word. You never know who we may reach together.
• Fundraise for Guts UK. Whether you donate your birthday, run, walk, bake or shave your beard – our small but mighty gut army takes us one step closer to getting to grips with guts each day.

Support for this campaign has been provided by Dr Falk Pharma UK Ltd. Find out how Guts UK works with the pharmaceutical industry here.