Table 5. Reasons for difficulty in recognising IBD as source of symptoms.
Atypical presentations: Few or no prototypical features or unexpected test values, such that the correct diagnosis is either not generated or is rejected as not conforming to the clinician’s disease prototype. | Six patients presented with constipation, when IBD is prototypically associated with stool looseness: “I didn’t fit the boxes because of the constipation and my weight was stable so nobody thought about looking into Crohn’s” (P11) |
Non-specific presentations: symptoms that do not easily discriminate between different potential diagnoses (IBS, coeliac, dyspepsia, etc). | “He just kept basically diagnosing me with. . . stomach-ache” (P14) “They were testing for coeliac. I cut all wheat and everything out (P10) |
Uncommon conditions less likely to be considered [42]: Clinicians think only ‘pathognomonic’ indicators, those that are specific to a particular disease, will make a more uncommon disease more likely. Even when indicators (e.g. elevated faecal calprotectin) are present doctors may be cautious, because of the possibility of false positives. | In this example, a GP requested a second stool sample, which recorded insufficiently high calprotectin to detect Crohn’s disease, which was finally diagnosed ten years later, and the GP defaulted to the more common diagnosis of IBS: “I needed two stool samples with high enough markers to be referred to gastro and [the second] wasn’t high enough, and [I was told] that it was probably the IBS playing up and just to change my diet again.” (P11). |
‘Diagnostic overshadowing’[43]: where a patient has another condition which provides a credible explanation for symptoms or alters the presentation. It can be particularly easy to explain away symptoms if they can be attributed to pre-existing conditions or health states (such as pregnancy) [44]. |
“They looked at that and thought, right the blood is from the haemorrhoids.” (P17) “Before I was 20, I’d got a diagnosis of hyper-mobility, fibromyalgia and IBS… and… a couple of mental health problems… I walk into the doctor’s and everything is put down to them… they won’t do any tests, they won’t do anything… the past twenty years where I’ve been gas-lit and told everything was in my head.” (P11, Crohn’s disease) |
Lack of knowledge of linked conditions. Uveitis is a rare autoimmune disease of the eye, that often occurs in combination with other systemic diseases, requiring collaborative work-up [45–47] between general practitioners, ophthalmologists, rheumatologists, neurologists and gastroenterologists [48], although this does not always happen. In isolation, it should trigger investigations for IBD [49]. | “I had the eye infection. . . And I went to the hospital, and they told me that I had uveitis. . . then [12 months later] I was losing a lot of blood. . . . I had, like, a really massive diarrhoea… every half an hour I was going to the bathroom and I was losing a lot of blood. . .” (P06, ulcerative colitis) |