Abstract

The long term outcome has been determined in 67 children with Crohn's disease whose symptoms started at or before 16 years of age. The mean period of follow up was 15.0 years (range 1.5-47 years). The number of children diagnosed in each quinquennium has not increased. Nearly all patients had gastrointestinal symptoms at presentation, but in some cases these were only elicited on careful enquiry. Only four children presented with growth retardation alone. Twenty one per cent of the children had diffuse small bowel disease at onset or during the period of review and posed major problems in management with high morbidity and mortality. They were generally treated medically to suppress disease activity and surgical intervention was restricted to resection of local stricture formation. The outcome in distal ileal +/- right colonic disease was similar to that in the adult. Patients with colonic disease (27% of total) were treated medically but 83% required surgical resection after a mean interval of only four years (range 0-9 years). Growth failure occurred in 21 children (height and weight less than 3rd centile) and 11 of these had a period of catch up growth; 10 after resection (ileal +/- right colon resected, eight; colonic resection, two) and one after medical treatment. Ten have permanent growth and height retardation, of whom four had diffuse small bowel disease and three had early recurrence after surgical resection. Nine children have died during the period of review, of whom six had diffuse small bowel disease. Despite the high morbidity, 38 of the 58 survivors are now well with no evidence of recurrent disease. A further 14 are well, but with radiological evidence of residual (colon, three; diffuse small bowel, eight) or recurrent (three) disease. Only six have symptomatic disease at present.