The PAPooSE Study: Pregnancy outcomes and experience in Patients with ileostomies

Research Lead

Miss Sue Blackwell (patient), Miss Nicola Fearnhead (supervisor)

The NHS estimates that there are approximately 9000 ileostomies performed each year in the UK. While they can be formed for many reasons, the most common are Inflammatory Bowel Disease (IBD) and Colorectal Cancer. Crohn’s and Colitis UK report there are 300,000 people in the UK living with IBD; the highest incidence is amongst those aged 20-29. This is the age at which patients often start to think about their future including starting a family. This study focuses on IBD patients who have had surgery to form an ileostomy.

Recent research has shown that the birth rates for patients with IBD are significantly lower than in the general population. This is due to poor knowledge of pregnancy related issues in IBD which leads to high levels of fears and anxieties regarding pregnancy with IBD. It could therefore be expected that these concerns would persist after stoma surgery for IBD, and even increase given the relatively unknown aspects around pregnancy and stoma function.

We know that both bowel disease and stoma surgery can have an effect on a patient’s ability to conceive a pregnancy. Many patients with ileostomies are concerned about becoming pregnant, and the impact that being pregnant might have on their stoma function. Research has previously focused on fertility and conception rather than patient experience and outcome of pregnancy after stoma surgery. The recent ACPGBI IBD surgery guidelines included details based on acknowledged limited evidence (case reports) of the issues that can face pregnant IBD patients with a stoma; these included changes to stoma shape and function, difficulty in fitting stoma appliances, intestinal obstruction and parastomal hernia.

The joint IBD/Obstetric working group has also highlighted that pregnancy after stoma formation is a key area of concern requiring further research. This study aims to establish the informational needs of female patients following stoma surgery who wish to consider starting a family and record patient experiences during pregnancy with a stoma, so that patients can be given the best information to help them make future decisions.

The study will

  • undertake a systematic review of current outcomes in pregnant patients with an ileostomy,
  • provide an audit of existing regional IBD obstetric services,
  • ascertain outcomes and experience of IBD patients with an ileostomy during conception, pregnancy and delivery.

Project Outcome

We will develop a patient information aid to inform decision-making. This will be disseminated via patient support groups and as an online resource.