Abstract and Introduction
"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……. I was constantly at doctors' and hospital appointments, but I was rarely asked about my pain. Even now, unless I'm in flare up, no one asks me about my pain or fatigue…. truthfully, those doctors and nurses don't have time to ask me about symptoms if I'm not flaring up…….IBD clinics even when interested aren't funded to manage those symptoms…and 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".
(Lucy Y, first diagnosed with Crohn's disease 23 years ago. Reproduced with permission).
Crohn's disease and ulcerative colitis ("inflammatory bowel disease" [IBD]) are chronic relapsing intermittently acute conditions, characterised by pathological changes in gut tissue, symptoms of diarrhoea, blood loss, and abdominal pain, long-term complications (fistulae, abscesses, and strictures), extra-abdominal manifestations such as arthritis, and systemic illness. Symptoms dominate IBD disease activity indices,[39,42] but the primary target for treatment is inflammation of the gut mucosa. This treatment has significantly improved over the past decade, notably through the use of immunomodulator and biologic drugs. However, the pattern, severity, impact, and prognosis of symptoms still vary substantially from patient-to-patient.
Clinicians caring for people with IBD focus on controlling the active bowel disease. Objective measures of disease activity, using endoscopy and imaging or surrogates such as faecal calprotectin, provide targets for disease-modifying drugs in trials and the clinic. However, there is a discrepancy between measures of gut inflammation and the extent and severity of patients' symptoms, and neither are straightforwardly related to measures of the overall impact on patients' lives. Early mucosal healing defined by endoscopy is associated with long-term improvements in symptom severity, but one-third of patients with healed mucosa do not achieve clinical remission.[76,77]
In particular, abdominal pain that persists beyond flares, despite optimal treatment of the gut disease, presents a common, disabling, and unresolved problem,[64,101] affecting patients' quality of life (QoL) and psychological well-being[58,75] and posing challenges for management.[66,87] For clinicians, this means disease-targeted treatment alone may not resolve the patient's pain and pain-related distress. The result is that chronic abdominal pain may dominate patients' lives—underrecognised in both specialist and primary care settings, poorly assessed, and inadequately treated.
In this Topical Review, we consider evidence about chronic abdominal pain in people with IBD. Our aim was to identify the extent to which general principles of modern chronic pain management should have equal place in the IBD clinic and consultation alongside the clinician's concern for diagnosing and treating underlying gut pathology, to ensure that pain in all patients with IBD is properly recognised, formally assessed, and treated safely and effectively.
Pain. 2021;162(10):2466-2471. © 2021 Lippincott Williams & Wilkins