An exploration of dietary advice for individuals with an ileostomy and Crohn's disease
Authors: Morris A. , Leach B. 
Published: May 2009

Background:  Adults with an ileostomy and Crohn's disease in remission are normally given ‘healthy eating’ advice with additional exclusions of specific food items. Advice is aimed at achieving recommended macro and micro nutrient intakes (DoH, 1991). However, this may result in increased stomal output when eating fibre rich foods (Bingham et al., 1982). In addition, food allergies or intolerances may result in avoidance of some foods. The aim of this study was to explore the suitability of this advice.

Methods:  Six members of the Coventry Ileostomy and Internal Pouch Association support group, aged 34–83 years, recruited by mail shot, took part in semi‐structured interviews conducted by the author in their homes. The interviews explored dilemmas in receiving advice and following advice. Interviews were recorded and transcribed verbatim. Significant statements were identified that represented the experience, and these were grouped into themes. Participants were required to have Crohn's disease. All participants provided their informed written consent.

Results:  Eight main themes emerged through analyses; controlling, new beginning, mixed messages, confusion, cautious, contemplation, frustration, and support. All participants received mixed messages on specific food items to include/exclude from the diet, with two participants receiving dietetic advice for weight and flatulence reduction. Confusion was experienced by five participants in response to following advice because nonrecommended foods could be eaten without experiencing adverse affects on the ileostomy. Fibre rich foods were avoided in five participants. Intolerance to dairy was reported by three participants and has been reported elsewhere (Fletcher & Schneider 2006). Subsequent experimentation with food after receiving advice resulted in the diet being adapted to one that could be followed. Fear of increased output, gastrointestinal pain and becoming ill when eating out were common concerns.

Discussion:  Food avoidance resulted in the adaptation of the diet which may have resulted in a low intake of some nutrients, contradicting previous research (Bingham et al. 1982). Dilemmas experienced when eating out with Crohn's disease were similar to coeliac disease (Sverker et al. 2005). However, this cautiousness was temporary due to Crohn's which was not experienced again when the stoma was in situ. Participants in this study may not be a representative population as a result of this small sample size and therefore the results obtained are not generalisable.

Conclusions:  Confusion, frustration and dietary alteration experienced by five of the participants highlights that current dietary advice for this group is ineffective. An alternative focus to dietary intervention should be researched.

References Bingham, S., Cummings, I. & McNeil, N. (1982) Diet and health of people with an ileostomy: dietary assessment. Br. J. Nutr.47, 399–406.

Department of Health (DoH) (1991) Dietary Reference Values for Food Energy and Nutrient for the UK. Report 41. London: HMSO.

Fletcher, P. & Schneider, M. (2006) Is there any food I can eat? Living with inflammatory bowel disease and/or irritable bowel syndrome. Clin. Nurs. Spec. 20, 241–247.

Sverker, A., Hensing, G. & Hallert, C. (2005) Controlled by food – lived experiences of coeliac disease. J. Hum. Nutr. Diet.18, 171–180.