Irritable bowel syndrome: the history of a modern epidemic
Work in progress – by Val Harrington
Given modern-day sensibilities over ‘one’s bowels’, I had expected that the topic of my Wellcome-funded postdoctoral fellowship, the history of irritable bowel syndrome (IBS), would produce embarrassed silences among friends and colleagues. To the contrary, I’ve found that almost everyone has some story to tell, about either their own experiences or those of someone close to them. And although these stories rarely touch on the more intimate and embarrassing details of symptomatology (e.g. abnormal stool form or frequency, straining or urgency of defecation, abdominal bloating and feelings of incomplete evacuation), almost all contain references to two key elements: pain and stress.
In retrospect, this is perhaps not surprising. The reported incidence of IBS has increased to almost epidemic proportions over recent decades, and it is now estimated to affect up to 10 per cent of the population at any one time, and four in ten people over their lifetime. Despite this, it occupies a highly ambiguous position within medicine. It is one of an ever-increasing number of functional gastrointestinal disorders (so named because symptoms occur in the absence of any clear and identifiable pathology), and although reports of such disorders first appeared in the medical press as early as the 19th century, there are ongoing debates about their nature, aetiology and meaning, particularly regarding the role of psychological factors. Thus, whereas some IBS sufferers complain that psychological models devalue their all-too-physical experiences of crippling pain and abnormal bowel movements, others openly discuss how their symptoms are exacerbated, if not directly triggered, by stress; and whereas some clinicians and researchers direct their attention to the microphysiology of gut motility or endogenous pain modulation, others regard IBS less as a ‘disease’ and more as an expression of psychological or social ‘dis-ease’.
I will be using both oral history and documentary (archival) sources to explore such debates and plan to interview leading gastroenterologists and researchers, front-line practitioners, and members of patient support groups. The research will be organised around four key themes: the emergence of the concept of IBS and subsequent changes in national and international understandings, classifications, and treatments of the condition; the shifting role and boundaries of IBS care; patient experiences and the development of patient support networks; and the role of drug and health food companies.
My focus will be on the past 50 years because although the term ‘IBS’ can be traced back to the interwar period, it was not until the 1960s that it was more generally adopted. Its definition and diagnostic criteria remained vague and contested, however – a situation that, in the late 1980s, a group of leading gastroenterologists sought to remedy through what came to be known as the Rome Process. This is an ongoing international expert consensus exercise, sponsored by – but ostensibly independent of − the pharmaceutical industry, and designed to establish guidelines on the classification and diagnosis of functional gastrointestinal disorders, including IBS. The most recent exercise, ‘Rome III’, involved 87 participants from 18 countries. Although the Rome Process has been generally welcomed, its findings remain contentious: although many would argue that it has given IBS a legitimacy it previously lacked, critics claim that, driven largely by the agendas of the pharmaceutical industry and the need to establish standards for entry into clinical trials, it has little impact on everyday clinical practice.
Clinical practice has, over the years, shifted from secondary to primary care and from treatment to self-management. Thus, whereas the patient in early literature was portrayed very much as the passive recipient of medical expertise, the focus more recently has been on understanding and working with patients’ perceptions and expectations, with an emphasis on negotiation, patient empowerment and the ‘expert patient’. In part, this reflects the more general shifts – both real and rhetorical − in the power relationships between doctors and patients over the second half of the 20th century and the rise of the ‘patient consumer’ and patient activism. Precisely how this has played out in relation to IBS is my current focus: a case study of the IBS Network, the UK’s oldest and largest IBS support group, which was founded in 1991. I am tracing its evolution from a small network of individual sufferers and self-help groups, coordinated by two committed and energetic volunteers, to – by the mid-2000s – a fully fledged health consumer group (renamed The Gut Trust) with a highly professional image, the funds to match, and an ambition to become the voice and face of IBS for sufferers, the medical profession and the wider world. Of particular interest is its subsequent demise and relaunch, and I will be exploring the extent to which the recent fortunes of the organisation (which has now re-adopted its old name, the IBS Network) reflect the harsh realities of the business environment in which health consumer groups now operate, or whether some of its difficulties stem from the fact that, despite its almost epidemic proportions, IBS continues to occupy a highly problematic position within the public and professional imagination.
In broad terms, my research will contribute to the small but growing body of work on chronic, contested diseases of the late 20th century, providing a UK focus in a field currently dominated by US- based studies, and moving away from high-profile disorders to a condition that, although deemed not medically serious, accounts for a huge amount of everyday suffering.
Dr Val Harrington is attached to the Centre for the History of Science, Technology and Medicine at the University of Manchester.