Irritable bowel syndrome in inflammatory bowel disease: Distinct, intertwined, or unhelpful? Views and experiences of patients

Abstract

The aim of the study was to explore beliefs about pain and related coping strategies of individuals experiencing abdominal pain during remitted inflammatory bowel disease (IBD), and their perception of irritable bowel syndrome (IBS) in the context of IBD. In-depth semi-structured interviews were conducted with 23 participants who self-reported experiences of abdominal pain during remitted IBD. The study was embedded in the constructivism tradition and reflexive thematic analysis was used to analyse the interviews. Results encompass 1) How IBS is perceived; 2) How individuals monitor symptoms to distinguish active from quiescent IBD; 3) Coping strategies employed to navigate the pain; 4)How manageability of pain guides the distinction between active and quiescent disease; v. How context influences pain interpretation and management; 5) What role illness history and health literacy play in the meaning of ongoing pain. The IBS label was perceived by some as invalidating, although it helped some people to worry less about ongoing pain and symptoms during remitted IBD. However, even for the latter individuals, IBS did not bring a clear understanding of painful symptoms. Participants’ responses highlight a need for explanations that incorporate both the complexity of IBD and underlying causes of ongoing pain during remission. Communication would benefit from the appreciation of pain (and symptoms) in the wider context of illness history and health literacy.

Keywords:

• Inflammatory bowel disease (IBD)
• irritable bowel disease (IBS)
• abdominal pain
• remission
• qualitative research
• thematic analysis

PUBLIC INTEREST STATEMENT

Inflammatory bowel disease (IBD) is a chronic disease caused by inflammation of the gut. Abdominal (tummy) pain is a key symptom. Periods of remission occur where the inflammation settles down.

Some people with IBD continue to experience abdominal pain during periods of remission. Clinicians and scientists have argued that these people may also have irritable bowel syndrome (IBS). But how do patients with IBD view their pain during remission and how do they view the diagnosis of IBS?

We asked 23 people with IBD about their experiences of pain in remission. We learned that some people worried less about ongoing pain when they could attribute it to IBS. Others felt dismissed by their healthcare team when IBS was mentioned. Most people felt IBS did not help understand why they had pain in remission. More refined and detailed explanations of symptoms during remission are required.

Acknowledgements

We would like to thank the participants to our study for giving us their time and for being so open during the interviews. Another thank you should be directed to Crohn’s & Colitis UK for helping in the dissemination of our study and helping to recruit participants. Finally, we would like to thank Ms Lara Tosunlar, MSc, and Ms Erin Walker, PhD, for their input at the start of this study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Open science badges form

As this is a qualitative study, it was not pre-registered, and we have not deposited any materials and/or data due to possible issues with personal identifiers in interview data and because participants have not consented to this.

Data availability statement

Our data is not deposited in a community recognised repository due to issues with personal identifiers and because participants have not consented to this.

Additional information

Funding

This study represents independent research funded by the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London in the form of a PhD Studentship for DH. RMM and KB are also part funded by the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care;NIHR Maudsley Biomedical Research Centre;

Notes on contributors

Rona Moss-Morris

Professor Moss-Morris’s research group investigates psychological factors that affect symptom experience and adjusting to chronic medical conditions. This mixed-methods research is used to design cognitive behavioural based interventions, including digital interventions, for a range of patient groups. Patients are partners in this research providing input and feedback through-out. RCTs to test the clinical and cost-effectiveness of these interventions form a key component of her research. Danielle Huisman is a NIHR BRC funded PhD student in her group. She has conducted a series of studies on the experience of pain in inflammatory bowel diseases (IBD) during remission including any overlap with symptoms of irritable bowel syndrome (IBS). The core of her work is lab-based measurement of pain processing, but she also has an applied angle. She has conducted three qualitative studies aimed at gaining a better understanding of health care professional communication in this area, general information provision around abdominal pain during quiescent IBD, as well as this study on patients views of pain in IBD.