Research into the post-gastrostomy management of patients with MND (PostGAS)
I have been invited to take part in research that is a multi-centre study co-ordinated by a team in Sheffield Teaching Hospitals NHS Foundation Trust and the University of Sheffield.
The overall research is to understand the best way to manage the diet for people living with MND after they have been given a gastrostomy feeding tube (whether inserted as a PEG, RIG, or PIG). The researchers want to evaluate the current practice of nutritional support that people with MND receive when they have a feeding tube. The overall aim is to produce evidence-based guidelines that will ensure everyone receives the best care and advice regarding nutrition after a gastrostomy.
This is particularly interesting research for me because I will be pioneering a triple-ostomy (balloon-retained gastrostomy, colostomy with removal of rectal stump, and suprapubic cystostomy) so, once I have been completely replumbed, we will have full control and monitoring of all my nutritional inputs and outputs!