Thriving, not just surviving, with motor neurone disease. The outcome of the first pre-emptive ‘triple-ostomy’

Abstract

The following report details the multidisciplinary treatment of a patient with motor neurone disease. The patient, who requested publication of this case, is a highly intelligent and distinguished robotic scientist. He was diagnosed with amyotrophic lateral sclerosis in 2017 and his personal approach to his condition has been to use modern technology and all treatment options to maximise his quality and duration of life. After his research, the patient decided that his life would be significantly improved by formation of an elective 'triple-ostomy', this being an end colostomy and suprapubic catheter (for continence), and a percutaneous gastrostomy (for nutrition). We report the peri-operative multidisciplinary approach taken with this case, the surgical procedures, the potential risks and the outcome. The patient is delighted with the result and aims to raise awareness that this may be a treatment option in highly selected patients.