Carlsson E, Berglund B, Nordgren S
Department of Surgery, Colorectal Unit, University of Göteborg, Sweden.
J Wound Ostomy Continence Nurs. 2001 Mar;28(2):96-105. doi: 10.1067/mjw.2001.113261.
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.
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.
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.
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.
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.
探讨短肠综合征（SBS）患者的实际情况以及造口对其日常生活的影响。重点关注营养与排泄、造口问题、相关的医疗和手术问题、社会经济状况以及社交和休闲活动。
选取了瑞典哥德堡萨尔格伦斯卡大学医院大学短肠诊所的6名克罗恩病患者（年龄范围38 - 68岁）。平均病程为25年，小肠平均长度为107厘米；4名患者在家接受肠外营养。
采用半结构化访谈在患者家中对其进行访谈，访谈分为重点关注的几个方面。数据通过速记转录，并于当天录入计算机。患者以书面形式回答了一份关于营养与排泄的问卷，然后邮寄给访谈者。
最显著的观察结果是自发行动能力受限，因为所有日常活动都需要大量规划。3名患者表示他们从未接受过造口；其他患者则不会恢复到造口前的生活方式。2名结肠造口患者描述了特殊的排空模式，这些模式导致了社交生活中的限制，此前未见报道。瘘管被认为是疾病中最折磨人的部分。3名患者从事兼职工作，这对生活质量至关重要。疲劳影响社交和休闲活动。
短肠综合征患者在生活的各个方面都受到许多棘手问题的困扰。因此，采用团队护理方法对于协调针对各种需求的行动至关重要。此外，生活质量的标准评估工具似乎也不太可能全面反映这些患者所面临的复杂情况。似乎还需要考虑应对机制。
