Normal or diseased? Navigating indeterminate gut behaviour

Introduction Delayed diagnosis of gut disease is a continuing problem, variously attributed to a range of patient, doctor, and health system factors. Gut disease often begins with indeterminate gut behaviours that are hard to classify. Aim This study aimed to investigate delayed diagnosis from the point of view of the patient, or prospective patient. How gut and gut disease was understood, what might prompt them to seek care, and their experiences of seeking care. Methods Using a qualitative design, we interviewed 44 people in New Zealand. Thirty-three had a diagnosis of gut disease, and 11 did not, though some of the patients in this latter group had symptoms. Results Some participants had a smooth trajectory from first noticing gut symptoms to diagnosis. However, a subgroup of 22 participants experienced long periods of troublesome gut behaviours without a diagnosis. For this subgroup of 22 participants, we found people struggled to work out what was normal, thus influencing when they sought health care. Once they sought health care, experiences of that care could be frustrating, and achieving a diagnosis protracted. Some who remained undiagnosed felt abandoned, though had developed strategies to self-manage. Discussion Indeterminate gut behaviours remain complex to deal with and it can difficult for both patients and doctors to assess when a symptom or group of symptoms need further investigation, watchful waiting or the use of other supportive strategies. Effectively communicating with healthcare staff can be a significant problem and there is currently a gap in support for patients in this regard.