“And then you start to loose it because you think about Nutella”: The significance of food for people with inflammatory bowel disease - a qualitative study

BACKGROUND: Many patients with inflammatory bowel disease strongly believe that food or certain food products heavily influence the symptoms or even trigger acute flare-ups. Unfortunately, there is no generalizable information for these patients, and therefore no effective diet has been identified to date. METHODS: The narrative interviews we used for this study provide the basis for the German website www.krankheitserfahrungen.de. Maximum-variation sampling was used to include a broad range of experiences and a variety of different factors that might influence people’s experiences. The sample included men and women of different age groups and social and ethnic backgrounds from across Germany. The interviews were analyzed using grounded theory. RESULTS: Four interrelated categories emerged: managing uncertainty, eating: between craving and aversion, being different and professional help as a further source of uncertainty. The most important issue for our responders was the handling of uncertainty and to find a way between desire for, and aversion against, eating. Many participants described difficulties during formal social occasions such as weddings, birthdays, or when going out to a restaurant. CONCLUSIONS: Many of the experiences the participants reported in their daily struggle with food and their illness, such as cravings for and abstaining from certain foods, were rather unusual and often stressful. Because they decided not to go out in public any longer, some of the interviewees experienced even more social isolation than they did before. Health professionals need to become more involved and not only advice about food and eating, but also help their patients find strategies for avoiding social isolation.