Funding research into quality of life for people with an ileostomy

Earlier this year, we teamed up with Ileostomy & Internal Pouch Association and Kingston Trust CIO to develop new research. The joint mission was to support work that will improve quality of life for people with an ileostomy.

We’re delighted to announce that 3 projects have won funding, with a diverse range of topics including pregnancy with a stoma, exercise and improvements to parastomal hernia treatment.

One of the projects has the first ever patient primary investigator to lead a BDRF study – a unique event for us and very likely a colorectal first!.

We are extremely grateful to our collaborative partners, without whom this potentially life-changing research could not have got off the ground.

Below you can read about each project, and hear from the patients and researchers on what this ground-breaking work will mean for people with an ileostomy:

HALT! Hernia Active Living Trial:

People with an ileostomy who experience a bulge/parastomal hernia(PSH) will be prescribed muscle-strengthening and aerobic exercises by a clinical exercise instructor for 12 weeks.  Changes in a bulge/PSH and quality of life will be measured before and after the 12 week programme.

The study aims to show that patients can safely take part in a wide range of physical exercises, removing a lot of the fear and stigma around an active lifestyle with a stoma and freeing people to enjoy their lives as they wish. An increase in the amount of physical activity that people with a stoma do will improve physical functioning, fitness and body image and thereby overall quality of life.

“As stoma patients we live with the fear of hernia at the back of our mind from the day we have our surgery.  I have been told various stats, but the most common one is 1 in 2 stoma patients will develop a hernia.  As a lover of sport with an 18cm scar, that fear will never leave me.  I do all I can to prevent developing a hernia but any research into the area is much needed and in my opinion, overdue.”

Rebecca Langley is aged 33 and has an Ileostomy 

“I think the new study about using physical exercise to assist with managing hernia and bulge formation is very interesting. As someone with a colostomy, I have to say that I have never really been given any information regarding this issue. Occasionally the stoma nurse takes a look and tells me that everything is ok. However, I don’t actually know what I am looking out for and what I can do to prevent it happening! I therefore think that this study could prove to be extremely helpful to ostomates generally. It would obviously be great to be better informed and to have some idea how to keep in good health.”

Susan Meer, is aged 61 and has a colostomy

“I am honoured to be leading a research team investigating physical activity to improve the quality of life of people with a bowel stoma. We will conduct the research to find out if core strengthening exercises help to reduce the chances of a bulge or parastomal hernia getting larger.”

Gill Hubbard, Professor of Health Services Research, University of the Highlands and Islands

The PAPooSE Study: PregnAncy Outcomes & Experience in Patients with IleoStomiEs:

Life with a stoma comes with many challenges, and for women planning to start a family these can be very daunting. Many people in this position are concerned about how their stoma will function during pregnancy, and if there are potential complications that may specifically affect their stoma during pregnancy and after delivery.

This study aims to find out what patients experience when wanting to start a family, being pregnant with a stoma, and after delivery, so that future patients have much better information to help them make decisions.

Knowing what happens to pregnant patients with a stoma will help establish best practice in advising and managing future patients as well as highlighting areas for future research and multidisciplinary intervention.

It is also the first BDRF approved study to have a patient as primary investigator!

“Pregnancy following stoma surgery can be a scary prospect, with worries about what will happen to your stoma during and after your pregnancy, as well as all the usual worries that every pregnant woman faces. This study will enable us to provide much needed information to patients with an ileostomy who are considering starting a family.

I’m absolutely delighted that BDRF have had the vision to approve a grant led by a patient, a colorectal first! If it wasn’t for the ACPGBI Delphi Games, which BDRF funded, I would never have known that patients could be involved in research, let alone think that one day I might be putting in a grant application of my own. The hard work starts now, but I am really looking forward to the challenge.” 

Sue Blackwell is Primary Investigator for the PAPooSE Study

The PROPHER study – Patient Reported Outcomes after Parastomal HErnia tReatment

A common complication of a stoma is a parastomal hernia (PSH) – caused by a weakness in the abdominal muscle which results in a bulge next to or behind the stoma. A PSH can cause skin irritation, problems with getting a stoma bag to stick, as well as pain and other more serious complications such as bowel obstruction. These issues often have a negative impact on a patient’s quality of life, but doctors do not know how best to treat PSH, and which patients require surgical intervention. In those who proceed to surgery, we are not sure of the best technique, including which reinforcing mesh should be used and exactly how and where it should be placed.

This large study will allow specialists to link ‘real-world’ PSH treatment with patient-reported outcomes to assess which patients do well with conservative or surgical intervention, and to unpick the techniques associated with the best outcomes. It will also allow the team to explore the current symptoms experienced by patients with a PSH and how these change over time.

This project will improve our knowledge of PSH symptoms and treatments. It will allow surgeons and other professionals to counsel patients better, and help them pick the best treatment for patients suffering from a PSH.

“Parastomal hernia is a very common complication for people with a stoma but we know that it can have a significant impact on their quality of life.  Some people go on to have a surgical repair, but the success rates are low, and often people will need more than one operation further impacting on their quality of life.  This study will provide us with a wealth of data on parastomal hernia repair, and more importantly the outcomes as reported by the patients themselves. This will allow us to provide patients with more detailed information when considering a parastomal hernia repair, as well as allow us to look at what surgical treatments may provide better outcomes.”

Tom Pinkney is Senior Lecturer and Consultant Colorectal Surgeon at the Academic Department of Surgery, University of Birmingham