Last week the Royal College of Surgeons played host to an innovative ‘Sandpit’ discussion on how to improve quality of life for people with an ileostomy. Patients, researchers and charity partners came together to share experience and play with ideas, building research projects from the ground up – hence the sandpit moniker!

There are some huge challenges faced by people with an ileostomy. Parastomal hernia is a feared complication that can hospitalise you for long spells, require repeated surgeries and cause excruciating pain – yet treatment is challenging and not always effective. Studies indicate that people with an ileostomy also have lower food related quality of life than the general population, and lower on average than inflammatory bowel disease patients who don’t have a stoma.

Stigma and anxiety can have devastating effects on mental health, leading to withdrawal and damaging social lives and personal relationships. We all know the benefits of regular exercise – but for people with an ileostomy exercise can hold a great deal of fear, and many are put off, often needlessly.

The inspirational people in the room however were living proof that all of this can be overcome, and through new research and better treatment pathways, these worries could one day be made a thing of the past.

Our day began with presentations from two charity partners, the Ileostomy Association and the Kingston Trust. Both organisations exist to support & empower people living with an ileostomy. They want to fund expert clinical research, in collaboration with BDRF, to develop clinical practice in the area and improve day to day life after ileostomy surgery – starting now.

No area of research is off limits, and over the course of the day topics from nutrition and diet to exercise, patient information, communication and mental health were covered.

Our session then moved on to presentations about a number of research projects already underway, and how these studies could be bolstered or complemented by the research to come out of the event. These covered varied topics, including parastomal hernia (a feared complication of life with an ileostomy) prevention & repair, as well as work looking at the specific nutritional needs of ileostomy patients, and the benefits and challenges of physical exercise.

Breakout sessions then discussed ideas around these themes, as well as understanding the patient journey and the vital importance of communication and proper information for all patients every step of the way.

The breakout groups presented their ideas back and by the end many had workable plans for future projects.

Now it’s time to watch this space for some exciting studies that will make a real difference to the lives of patients both now and in the future.

Julie Munro, a research physiologist who came down from Scotland to join us, said “I thoroughly enjoyed the day, and have made some new connections and ideas are now buzzing around my head. A very positive day and great from my point of view as a researcher to combine ideas with clinicians, fellow researchers, and most importantly patients.

The three charities have come together to fund research before – and now we envisage holding another commisioned grant round in 2019.

We are also excited to see these discussions bloom into fully patient-led, groundbreaking studies that are game changers for people with ileostomy in the UK and beyond.

The tweets below capture some of the feeling that was generated among patients, surgeons and charities alike!

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