More than half a million people in the UK live with Crohn’s or Colitis. Both conditions affect the digestive system and can lead to people experiencing symptoms that they may find hard to talk about.

We know that many people would feel embarrassed to visit the doctor if they experienced symptoms such as blood in poo, abdominal pain, bloating and a change in their bowel habits. This is a big problem, because if people are too embarrassed to discuss their symptoms, they could be putting off getting the treatment they need.

At Crohn’s & Colitis UK we know it is important to be able to talk about your bowels, especially when you need support to feel better. That’s why we commissioned a piece of research with Kohlrabi Consulting called “The Language of Poo” to find out more about what words the public prefer to use. The study aimed to understand how different people across the UK discuss their bowel symptoms. This will allow us to choose our language according to the audience, make our supporters feel more comfortable and make our campaigns more impactful.

What did the research do?

Kohlrabi sent a survey to over 400 people across the UK, asking them to describe some of the symptoms of Crohn’s and Colitis, such as constipation, diarrhoea, farting and urgently needing the toilet. People were also asked what words made them feel uncomfortable. After the survey, Kohlrabi interviewed 10 people to find out more about what language they used when they needed to discuss bowel symptoms.

Kohlrabi made sure that their survey reached as many people as possible, including different ages, genders, education level and ethnicities.  For this research, 46% of the people who responded were White, 20% were Black, Caribbean or African, 19% were Asian or British Asian, 7% were Gypsy or Irish Travellers, 6% were Arab and 4% had mixed ethnicities or another ethnicity.  By reaching more people, we were able to understand whether different groups used different words, or if some groups found talking about poo harder than others.

What did we find out?

Not everyone liked or understood the words used to explain bowel symptoms. Nearly everyone knew and accepted the words “constipation” and “diarrhoea”. People were also comfortable using the words “stomach” and “tummy”.  And, although not everyone wanted to use the  word “poo”, most people preferred “poo” to other words like “stool” or “bowel movement”.   However, some respondents were not familiar with words such as “bowel” or “faecal incontinence”. They were also uncomfortable discussing symptoms like blood in poo or farts.  This is an important message for healthcare professionals, as it shows people may not understand or like the terms doctors and nurses use when they talk about poo. 

Some people were not comfortable talking about their symptoms at all. Only 49% of people felt comfortable telling a friend if they had diarrhoea. 11% would not be comfortable using the word “diarrhoea” when they searched online, and 9% would not be comfortable telling a doctor. This suggests that for some people it might be very hard to get the help and support they need.   Some people preferred to use vague terms, saying they “felt unwell” or had “tummy problems”. This too may mean that they can’t adequately explain what is happening.  

The majority of people did not feel comfortable discussing their symptoms in the workplace. Throughout the research, it became clear that the majority of people (84%) would not be comfortable discussing problems with their poo at work. This means that people may find it harder to explain why they need accommodations at work, like sitting closer to a toilet. 

Different demographic groups used different language to describe bowel symptoms. There were many subtle differences in the language used across groups.  For example, men were three times as likely to use explicit or informal language like “having the s***s”. Women, on the other hand, preferred to use less direct language like “having toilet problems”. Interestingly, older people were more likely to use vague language like “dicky tummy”, which shows how the language around bowel symptoms has evolved over time.

People who are Black, Asian or Arab were more likely to be direct, using neutral or medical terms.  Meanwhile, White participants were more likely to be indirect, by saying they “had an accident” rather than using the words “faecal incontinence”.  The findings suggested that the best language to use for all groups are words that clearly describe the symptom, whilst taking care not to be too explicit.

Why is it important?

At Crohn’s & Colitis UK, we are here to help and support everyone with Inflammatory Bowel Disease. This research will help us to keep doing exactly that, by telling us what language is best to use when we’re discussing bowel symptoms.  We are now more aware that certain groups prefer different terms.  This will strengthen our campaigns and help us continue our work to ensure everyone with Crohn’s and Colitis feels represented and supported by us. This research will also help us work with healthcare professionals and employers to make sure they know how important it is to be open to hearing about symptoms so they can get you the best support.