What this research looked at

Many people with Crohn's or Colitis experience tummy pain. For a group of people, this pain does not go away even when their disease is in remission. The nervous system may play a role in this.

The nervous system is like a set of wires that carry messages between the brain and the body. It helps us feel, move, and notice what is happening inside us. In Crohn’s and Colitis, the nervous system can become extra sensitive. This might be because the inflammation confuses the nervous system, so it sends strong messages to the brain even when nothing is wrong. The brain may react as if something needs attention. This can make us notice everyday things in the gut and make them hurt, even just poo or gas moving through.

The researchers wanted to study the link between long-term inflammation and sensitivity of the nervous system. However, because some staff left, the project was changed. Instead, they worked on tools to help people track pain and talk about it more easily.

What the researchers did

The researchers completed two studies:

• Study one examined how doctors, nurses, and psychologists feel and talk about pain compared to patients. The researchers asked 13 healthcare professionals what they find important to know about patients’ pain. They also looked at earlier interviews with 71 people with pain and 12 health professionals.

• In study two, the researchers talked to 13 healthcare professionals and 19 people with long-term pain and fatigue. They asked what they thought about tracking their symptoms. They wanted to know how it can help and when it might not. This helped them think about what to include when developing a tool for tracking pain.

• Both studies showed that people need to speak up for themselves during clinic visits, which can be hard sometimes. Researchers have worked with patients and health professionals to create an information leaflet. The leaflet explains why pain may continue, even when the disease seems under control. It also gives tips on how to prepare for clinic visits. The goal is to help people feel more confident about talking about their pain.

What the researchers found

Healthcare professionals told the researchers that they talk more about pain in Crohn’s than Colitis. But people with both conditions said they are not often asked about their pain. Many felt their pain was not understood, and little was done to help them. This made some people decide that they were not taken seriously and stopped them from talking about their pain. These findings show that pain needs to be discussed more openly during clinic visits. People should feel safe and confident when talking about their pain.

The researchers also found that many people track their symptoms. This helped them to:

• Notice when a flare was starting
• Spot what might be causing their symptoms and try ways to manage them
• See if they could go back to eating or doing things after a flare
• Share helpful information with their care team
• Feel more in control of their health

However, tracking symptoms could sometimes feel stressful. Also, if people did it too often or tried to write down too much, it did not always help them reach their goals. People suggested developing a simple phone app with a button to press when pain starts. This would help people track pain without too much effort and make the information more precise.

What the researchers think this could mean for people with Crohn's and Colitis

This research may encourage healthcare professionals to ask more about pain during clinic visits and help people bring it up. It shows how a simple app could help people track their pain and remember what to say. This might make conversations about pain easier, and help healthcare professionals better support their patients.

Scientific publications 

Huisman, D., Andrews, E., Williams, A.C.C., Parkes, M., & Norton, C. (2024). Patients and clinicians have different priorities when discussing pain in the IBD clinic. BMJ Open Gastroenterology 2024, 11:e001540. https://doi.org/10.1136/bmjgast-2024-001540

Danielle Huisman, Esther Andrews, Amanda C de C Williams, Miles Parkes, Christine Norton. Patients and clinicians have different priorities when discussing pain in the IBD clinic. Abstract presentation at the Pain in Europe XIV congress of EFIC (The European Pain Federation EFIC), April 2025 in Lyon, France

Danielle Huisman, Esther Andrews, Amanda C de C Williams, Miles Parkes, Christine Norton. Patients and clinicians have different priorities when discussing pain in the IBD clinic. Abstract presentation at the 20th congress of ECCO (European Crohn's and Colitis Organisation), February 2025 in Berlin, Germany

Who led this research: Prof Miles Parkes
Our funding: £119,952 
Duration: 3 years 
Official title of application: Identifying susceptibility within the nervous system for pain in inflammatory bowel disease - a stage 2 IBD-BioResource cohort study