Living with CF and pancreatitis: Izzie’s story
Can you tell us a bit about yourself?
I’m 27 and I'm a freelance writer. I also campaign around access to medicines and healthcare. I was diagnosed with CF when I was six years old and I first had an incidence of pancreatitis when I was seven.
What is pancreatitis?
For a lot of people with CF their pancreas isn’t able to digest food, whereas my pancreas does digest food, but not well. Pancreatitis causes a lot of abdominal pain and it comes on without any warning. I feel it in my stomach and it radiates to my back. It's very debilitating pain. I get flare-ups quite regularly, but when it's a particularly bad one, I can’t move.
How does CF affect your day-to-day life?
CF affects my life a lot, especially as I've got older. It can be a spiral – it’s painful to eat because of my pancreatitis, as I’m eating less then I'm not as strong to be able to fight off chest infections.
Pancreatitis limits how much I can do. At times I struggle to walk because of the pain, so even walking to the bathroom is difficult. Even when I am in pain, outwardly I look fine. Like with all aspects of CF, because it's invisible, it can be really hard for people – including A&E doctors – to believe that you're not feeling good.
Socially, sometimes it's difficult. If I'm with people who don't know about pancreatitis, they might ask why I'm not eating. Sometimes you just don't want to have that conversation.
How do you manage your pancreatitis?
Frustratingly, I can't make links between certain foods and whether they’ll trigger my pancreatitis. I have lots of conversations with my CF team about it, but I just try to eat what I can, even though it hurts.
My gastro team have suggested a few options to manage the pancreatitis and many of these have been ruled out by my CF team. I've been referred to specialists in London, and at every appointment my family is hopeful. But it’s always the same answer. I am just so used to the response "there's nothing we can do."
There's been a lot of pain management. I’ve tried lots of options, and it’s a balance between managing the pain and the side effects so I can live my life.
Because I've had it so long, I think: "I can't live in constant fear of the pain, I just want to live when I can."
What are your hopes for pancreatitis research?
I was so excited when I heard about this research call. I’d like there to be more understanding about pancreatitis when it is linked to CF, because there is a real lack of knowledge about it. Even if it isn't about how we can make it better, just having a bit more understanding and knowledge would be great.
What would you want researchers to know about pancreatitis?
I’d like people to know just how hard it is to manage pancreatitis alongside the other aspects of CF. It isn't just a side effect of CF – it's a whole other thing.
I’d also like people to know just how much pain it causes. On the NHS website, it's listed as one of the most painful conditions people can develop. But it's one thing knowing that and another thing understanding how debilitating that is.
Also, because there's so much unknown about it, it can be quite daunting and a bit scary to navigate, especially if it's someone's first flare-up.
Would you have a message for somebody else with CF and pancreatitis?
I would just say to advocate for yourself as much as you can. Don't let pancreatitis be dismissed as another problem, because it's such a big part of your life. Reach out if you can, to someone else who has it.
I don't personally know anyone else with CF and pancreatitis. But I imagine if they could just chat to somebody else in the same position, it would feel a lot better.
If you would like to share your story about living with CF, please contact us on [email protected].
More information on pancreatitis can be found on the Guts UK website.
Calling all researchers!
The aim of the the Guts UK and Cystic Fibrosis Trust funding call on pancreatitis in CF is to accelerate progress against the research priorities identified by the Pancreatitis Priority Setting Partnership and to boost pancreatitis research that is directly relevant to, and has potential benefit for, people with cystic fibrosis with a complication of pancreatitis.
One grant of £60,000 is available over 2 years. This award does not cover salary costs for the applicants or senior supervisory roles.The deadline for applications is 12 noon on Thursday 30 July 2026