Living With an Ostomy and Short Bowel Syndrome

In Brief Purpose Practical aspects and impact on daily life of short bowel syndrome (SBS) and an ostomy were explored in people with SBS. Interest was focused on nutrition and excretion, ostomy problems, associated medical and surgical problems, socioeconomic situation, and social and leisure activities. Subjects and Setting Six subjects (range, 38–68 years) with Crohn's disease were included from the University Short Bowel Clinic at Sahlgrenska University Hospital, Gothenburg, Sweden. Average disease duration was 25 years, and mean small intestinal length was 107 cm; 4 subjects were receiving parenteral nutrition at home. Methods Subjects were interviewed in their homes using a semistructured interview divided into the areas of focus. Data were transcribed by shorthand and were rewritten into the computer the same day. A questionnaire on nutrition and excretion was answered by the subjects in writing and mailed to the interviewer. Results The most significant observation was the limited ability to act spontaneously, because all daily activities involved considerable planning. Three subjects said they had never accepted the ostomy; the others would not return to their pre-stoma lifestyle. The 2 subjects with a colostomy described special emptying patterns that caused limitations in social life that had not been reported previously. Fistulas were reported as having been the most trying part of the disease. Three subjects worked part time, which was of utmost importance for quality of life. Fatigue influenced social and leisure activities. Conclusion People with SBS are bothered by a number of demanding problems in various aspects of life. Therefore, a team approach toward care is critical to allow for coordination of action toward the various needs. It also seems unlikely that standard instruments of quality of life can capture the complicated situations with which these subjects live. It appears that coping mechanisms also need to be considered. An exploratory study of the practical aspects and impact on daily life of short bowel syndrome and an ostomy.