Living with intestinal failure caused by Crohn disease: not letting the disease conquer life

This article reports the findings of what it means to live with intestinal failure caused by Crohn disease and how it influences daily life. Ten patients, 7 with an ostomy and 7 on home parenteral nutrition followed up at an outpatient clinic for patients with intestinal failure, were interviewed using a qualitative, phenomenological-hermeneutic method. The analysis of the transcribed data is described thematically and resulted in 3 main themes; (a) struggling to not be controlled by the disease, (b) walking on a thin thread, and (c) being seen as a person, not just as a patient. These themes led to the comprehensive understanding that living with intestinal failure was interpreted as the criticality of maintaining control over one's life and body while maintaining autonomy and not letting the disease conquer life. Life entails a constant struggle with much planning to live as normally as possible and get the most out of life. It was of great importance to be seen as a person and not just as a disease, affirm that life as it is has meaning, there is a state of suffering related to the disease, there are existential issues, and suffering is related to care.