We’ve published new research into pain in the Journal of Pain. Abdominal pain that doesn’t go away is a common and challenging problem that can have a big impact on people living with Crohn’s or Colitis. Yet it’s not given the focus needed in appointments.
My pain is exhausting, and it’s rarely just pain. If not accompanied by diarrhoea, fatigue, or other debilitating symptoms, it’s joined by a spiral of anxious thoughts about what the pain means … Even now, unless I’m in flare up, no one asks me about my pain or fatigue … Healthcare professionals dismissed my symptoms as they don’t know what to say, as they don’t understand pain in IBD, and they feel as powerless as I do … Given that pain is one of the top presenting complaints in IBD, I find it astonishing how little I get asked about it.
We’re committed to investigating pain through our work with the Pain Collaborative Network, set up to speed up research into this challenging symptom. Our topical review in the Journal of Pain looked at all the research and studies out there on pain in Crohn’s and Colitis. Written by members of our Pain Collaborative Steering group, it highlights the current issues with pain assessment and management in IBD and suggests possible solutions.
A need to understand pain
It’s important to understand the pain experienced by people with Crohn’s and Colitis so we can work towards improving how this symptom is treated and managed. But pain can be different for each person which makes it hard to measure. It can be tough to separate abdominal pain from other effects of Crohn’s or Colitis, such as fatigue, difficulty eating, or discomfort caused by being in a flare. However, the topical review showed that 30-50% of people living with Crohn’s and Colitis reported abdominal pain that continued even when they were in remission, showing that more work needs to be done to understand the cause.
People with Crohn’s or Colitis can often experience pain elsewhere in their bodies, not just in the stomach and surrounding the bowel. Many people experience joint pain, or have other conditions which can cause them pain in other areas of the body such as Axial Spondyloarthritis, Fibromyalgia, or experience migraines. This means it can be harder to work out what treatment is needed to help someone manage their pain, as it can be difficult to understand what is causing it.
Whilst there are some available treatment options to help people manage their pain (such as medication or psychological support) these are fairly limited and are not specific for Crohn’s and Colitis. This means they might not achieve the best outcomes for people who are struggling.
This paper shows that more work needs to be done to develop treatments and techniques to help people living with Crohn’s and Colitis to manage their pain.
What else have we been doing?
Recently, we released a report on Crohn’s and Colitis Care in the UK as part of our work with IBD UK. Over 10,000 people living with Crohn’s and Colitis told us about their care and provided the evidence for the report. The results showed that 29% of patients across the UK were not asked about pain during medical appointments despite this being part of the IBD Standards set out in 2019. We need this to change so people can have personalised, joined-up care that takes pain into account, and manages it efficiently and effectively.
The National Institute of Health and Care Excellence (NICE) and Healthcare Improvement Scotland have produced general guidelines for pain assessment and management. These organisations work to provide guidance, advice and information services for health, public health and social care professionals. The guidelines show that care should involve the right group of health care specialists to help people manage their Crohn’s and Colitis. This could include their GP, IBD nurse specialist or gastroenterologist. They also show that pain needs to be considered as part of personalised care, meaning people get the right treatment and care for them.
Pain for people with Crohn's and Colitis can be relentless. Made worse by a lack of effective options to treat it. We desperately need to see change in how pain is managed for people living with these debilitating, lifelong conditions. Work needs to be done to develop better methods of pain assessment and treatment, and pain needs to be routinely asked about at appointments. The availability of existing treatments, such as psychological approaches, is unacceptably low. This needs to change. We must ensure people living with Crohn’s and Colitis have equal access to the chronic pain management options that are already used for other long-term painful conditions.
We know how difficult it can be to manage your Crohn’s and Colitis, and pain that continues even when you’re not in a flare can be another challenge to cope with. We are developing a guide to pain in Crohn’s and Colitis where you will be able to find information and support. We are also partners in the ADVANTAGE pain research group and will be making sure the voices of people with Crohn’s and Colitis are heard throughout the programme.
You can find out more information about how to discuss pain with you doctor or IBD nurse specialist in our Appointments Guide, which provides helpful tips on how to explain pain you have to other people.
If you’re struggling with persistent pain as part of your Crohn’s or Colitis you shouldn’t have to suffer in silence. Speak to your doctor or IBD nurse specialist about your pain and remember, we are here for you.