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Real Voices: Working for a digestive health charity

Julie Harrington works as the CEO of GUTS UK, a charity for digestive health. In this fascinating piece, she describes how the misinformation and taboos around digestive disorders results in huge health issues for our society.

GUTS UK has been around since 1971, under various different monikers. We tried to be the British Digestive Society at one point, but ended up getting a lot of enquiries about biscuits. We only became GUTS UK in 2018, after being called Core for some years. This name change boosted our visits to the website from 15k a month up to 70k-100k a month, just from changing the search terms. It’s funny, but one of the issues we face as a charity is that the public don’t actually know what ‘digestive’ means. Most people don’t know how to talk about gut issues because there’s a sense that it’s taboo.

Around 200,000 people a day search “diarrhoea” on the internet, and that’s just counting those who manage to spell it correctly. People normally begin with looking up a single symptom like diarrhoea, constipation, abdominal pain, blood in poo, flatulence, or trapped wind . From a simple search term like that, we need to ensure people are directed to our website where we can help them.

The stigma clouding this subject often leads to delays in seeking help. An altered bowel habit is where a lot of serious conditions like ulcerative colitis begin, but our research finds that people wait an average of 6-18 months experiencing these symptoms before consulting a GP. There’s a real embarrassment when it comes to discussing gut health, because it relates to poo. We just don’t talk about these things in public. “How well are you pooing these days?” That’s not a general conversation starter in UK society, which means people don’t pay attention to changes in their bowel habit, which is very dangerous. We as a charity have an attitude of No Poo Taboo, to encourage people to feel comfortable talking about their bowel movements.

We take our guts for granted. When we swallow, we don’t think about that food again until we poo it out. We don’t think about the fact that it’s an incredibly complex process going on inside us at all times, involving a 25ft long tube with five exits and numerous internal organs attached. If you’re lucky enough to not have gut problems, you never even think about it. But when something goes wrong, what do you do? How do you know that something’s wrong? I think if we all knew more in general about what our digestive system does and how it functions, it would help people to spot signs that they need medical help.

The stigma around gut health also leads to people with a diagnosis to struggle to feel heard. A lot of gut-related conditions qualify as invisible disabilities, and can make those suffering from them prisoners in their own homes. It’s hard enough for most people to understand what ulcerative colitis and Crohn’s disease are, and these are actually umbrella terms for many more inflammatory bowel diseases such microscopic colitis. But these conditions affect lives significantly. If you have frequent flare-ups of diarrhoea (which is the reality of colitis) it can seriously affect your health, resulting in weight loss and exhaustion, among other side effects.

For example, if you’re experiencing a flare-up and having to spend a lot of time in the toilet while you’re at work, it might cause issues for you professionally. People are embarrassed to discuss these problems with co-workers and bosses, even though it’s a legitimate disability which can significantly affect how one functions day-to-day. If we could talk about it more, so many problems would be solved and life with a digestive disorder would be made easier.

On our website, we can help you to figure out what your symptoms are. We can show you how to explain them properly to a GP. A great example of someone who used our website to work out what to say to the doctor when she went for her appointment, was a woman named Claire. She had a sudden bowel change, but her GP couldn’t find anything abnormal. She used our website to read up about microscopic colitis, and found out that it can’t be detected through a colonoscopy and requires a biopsy instead, and so was able to ask the doctor for both a colonoscopy and a biopsy, leading to a quick diagnosis of microscopic colitis. So had she not looked on our site, she might have just had a colonoscopy and not found anything to be wrong. We aim to empower people with information, and help them to get the most out of their doctor’s appointments.

We are a tiny charity with only 11 employees, which is vastly disproportionate to the population. We struggle to get the kind of celebrity endorsements other charities get because obviously it isn’t a glamorous subject, so we do find it difficult to get the word out in the public eye about what we do. I’d love to see more people, especially those who have a large platform, to be open about their gut health.

I’d also love to do a schools programme, where we get kids to really engage with this subject to promote openness about it from a young age. Babies and children are fascinated by poo, but this interest gets knocked out of them when they get older as it’s seen as bad manners. We are actually facing a huge challenge currently in this country regarding non-alcoholic fatty liver disease, which is especially common in young people. This is when kids eat so much fatty food that their fat covers their viscera. We’re going to have more and more young people suffering from liver failure who’ve never touched a drop of alcohol, simply because of obesity. This will take a toll on our society, the gut issues will pile up and up, which will cause huge issues for the NHS.

The only way we can solve this health crisis is by breaking down the taboo around gut problems and talking about them more openly. I would urge people to pay attention to their digestive system so that they can spot symptoms, and seek advice and support from our website and from a GP as soon as possible.