It takes guts to talk about gastrointestinal (GI) symptoms

Cystic fibrosis can have wide reaching gastrointestinal (GI) symptoms. These are any symptoms in your digestive system or gut, and range from tummy pain and bloating to not absorbing nutrients well and even an increased risk of bowel cancer. GI troubles are common across all age groups and can affect nutritional status, energy levels, and mental wellbeing. Due to new treatments, many people have had improvements in other symptoms. This means GI issues may now have the biggest impact on the quality of life of some people.

For many people with CF, symptoms such as nausea, reflux, or unpredictable bowel habits can be a daily challenge. These issues often begin at a young age and can continue and evolve as someone gets older. Even though they are very common, many people find GI symptoms difficult to talk about. This can mean these issues remain untreated, making things worse in the longer term and impacting physical and emotional health.  

While pancreatic enzyme replacement therapy (PERT) and nutritional support have transformed GI management in CF, they do not fully address the underlying causes of gut discomfort and dysfunction. As more people with CF live longer thanks to advancements like modulator therapies, attention is increasingly turning toward the gut – and how it fits into the bigger picture of health. 

What is the Trust doing to improve understanding of GI symptoms? 

In response to this growing need for better understanding and resources, Cystic Fibrosis Trust is working with a group of CF and GI specialists to develop guidelines about the best ways to work with the CF gut.  

"People with CF have told us that gut symptoms like acid reflux, nausea and bloating affect their lives significantly, so finding solutions to help is really vital. CF-related gut symptoms can sometimes affect daily life even more than breathing problems, particularly in adults, so it is great that the Trust is focusing on this important issue and I look forward to working with them,” said Professor Bu'Hussain Hayee, a member of the CF GI working group and Clinical Director for Liver, Endoscopy and Gastroenterology at King's College Hospital NHS Foundation Trust. 

To ensure people with CF can get the support they need, we also want to work with CF teams to develop understanding. A survey of several CF centres undertaken on behalf of the working group in 2024 highlighted variation in CF teams’ access to GI services and to bowel screening. This supports the need for clearer guidance on how this should be managed so that everyone with CF can access the GI care they need.  

During a workshop at our 2025 Multidisciplinary Team (MDT) Conference, delivered by members of the working group, a collaborative, personalised and holistic approach to GI care for people with CF was recommended. This included closer working with GI specialists and upskilling of CF teams, but also new resources for the community. The CF GI working group is now looking to generate more evidence and develop consensus guidance on best practices in managing GI issues in CF. We are also updating our GI leaflet to provide the community with reliable information about CF gut issues. This, along with updates of all of our nutrition leaflets, will be available here.

Finding answers 

Relief of GI symptoms was voted the third most important research priority when we asked the CF community about the research that matters most to them. Trust-funded researchers within our GRAMPUS-CF SRC aim to link the specific gut symptoms people with CF experience to what changes are taking place within their intestines. The results of their research could lead to more tailored medicines to treat people with CF in the future.  

Not every person with CF experiences the same combination of GI symptoms, so it’s likely there are different mechanisms that cause different symptoms. If scientists can identify these different ‘clusters’ of symptoms and the mechanisms behind each one, they can develop better, more personalised treatments in the future.  

People with CF with gut symptoms at the Nottingham, Leeds and Belfast CF Centres have already been helping the researchers with their studies. Now, researchers have launched a new part of the study, meaning that people with CF can help their research, wherever they are, by telling them about their CF. “We’re asking people with CF to complete regular online questionnaires about any gut symptoms you experience.  

“Your participation will be helpful whether or not you have trouble with gut symptoms and whether or not you are taking a CF modulator” said Professor Alan Smyth, who is the Principal Investigator of GRAMPUS-CF SRC. You can find out more and get involved by visiting the study website at grampus-cf.org.  

There is also ongoing research into the gut-brain axis. This is how your gut and brain talk to each other. Signals go both ways, so your gut can affect how you feel, and your feelings can affect your gut. The more we learn about this, the better we can help people manage their gut symptoms.  

Emily’s experience of managing GI symptoms  

The unpredictability of my GI symptoms is my biggest battle day to day. You have to consistently assess your diet, intolerances, pancreatic insufficiency, and seasonal changes. It can knock you sideways and you need to adapt really quickly and plan for all eventualities, particularly for trips away, days in the office, and days out.  

The main symptoms I suffer with are chronic bloating and pain. It’s challenging as it hugely impacts my self-esteem. Body image is so hard in a world dominated by social media and pressure from others, and when you’re already dealing with physical pain and discomfort, the mental side of it can be really tough.  

I hope research can further explore what triggers GI issues in CF, particularly bloating and agonising pain. Adapting your diet is already hard enough when you have to eat more fat and calories, and track your consumption to take Creon. I would be much happier if I knew what triggered my body and what to avoid.  

I think we need to continue to move away from the rhetoric that CF is a lung condition – unfortunately, it is so much more. Before I got really sick with my lungs, I was regularly hospitalised with GI symptoms and when I look back on that time, I found that harder to deal with than my time spent in hospital having IV antibiotics. We need to keep working to diversify the definition of CF in public consciousness, and I think being more open about GI issues is a crucial step in the right direction. 

Here for you 

If you have questions about GI symptoms, or any aspect of your CF, please get in touch with our friendly Helpline team. You can call them on 0300 373 1000 or 020 3795 2184, Monday–Friday 10am–4pm. Email [email protected], or message on WhatsApp at 07361 582053.  

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