The Pain Collaborative Network Conference 2019

Pain is one of the most debilitating symptoms of Crohn’s and Colitis. We want to prevent and manage this symptom and improve quality of life for people who experience it.  

Earlier in the year we announced our new research initiative, a targeted call asking anyone - researchers, doctors, collaborators, pharmaceutical companies - to help us better understand why people with Crohn’s and Colitis experience pain. 

My pain is exhausting, and it’s rarely just pain.  If not accompanied by diarrhoea, fatigue, or other debilitating symptoms, it’s accompanied by a spiral of anxious, ruminative thoughts about what the pain means.

Living with Crohn's

Our invitation for research was accompanied by the launch of our global research network, the ‘Pain Collaborative Network’, with the first event recently taking place in London.  

Over 60 experts in pain and people with Crohn’s and Colitis gathered in one room at the Shard to share riveting discussion about pain. All with the aim of accelerating research into the field and trying to solve this area of unmet need.  

Attendees heard from an impressive programme of speakers including Lucy, who has Crohn’s. She shared her experiences in a powerful and moving speech highlighting why it is so vital that we bring together leading experts and drive research into pain.

High quality research is fundamental in improving the care for us. That everyone living with IBD feels listened to, understood, empowered and supported to manage their symptoms in order that they can really live, and not just merely exist will one day hopefully become a reality thanks to some of the work taking place in this room today.

Living with Crohn's 

Experts from all over the world delivered talks, such as Professor Eva Szigethy from the University of Pittsburgh who discussed how behavioral therapies, like Cognitive Behavioral Therapy (CBT), can be used as a treatment for pain in people with Crohn’s or Colitis.    

Attendees had the opportunity to meet people living with Crohn’s and Colitis, and there were panel discussions exploring topics such as the science behind why people experience pain, and psychological treatments to identify unanswered research questions within each area.   

Other international guest speakers from Europe included, Dr Nathalie Vergnolle, Dr David Hughes, and Dr Venkat Subramanian. The talks were interesting, engaging and informative. Hearing from Lucy, who lives with Crohn’s, was extremely inspirational and reminded everyone in the room why the Pain Collaborative is so important.     

Approximately 70% of people with Crohn’s or Colitis experience pain. This can be constant and relentless, and current treatment options aren’t good enough. Our global network brings together researchers to better understand pain and tackle the current shortfall in treatments. 

It was fascinating to hear from leading experts at the inaugural Pain Collaborative Network event. Exciting conversations took place which will lead to even more exciting projects that have the capability to really transform how we understand, treat and prevent pain in people with Crohn’s and Colitis. 

Helen Terry, Director of Research, Crohn's & Colitis UK 

We can’t fund projects like this without your help.

Want to get involved in research?

The best quality research happens when people with Crohn's and Colitis are involved, and you can make a difference at every stage of research.


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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

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