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. Sue Blackwell
Primary Investigator - PAPooSE Study

Problem addressed, background and strategic significance

9000 surgical ileostomies (small bowel stomas) are created each year in the NHS. An ileostomy may be formed for many reasons, with the two most common being Inflammatory Bowel Disease (IBD) and colorectal cancer. IBD often first affects people in their twenties to thirties, at a time when they are considering starting a family. Both IBD and cancer surgery regrettably affect a woman’s ability to get pregnant.

Patients worry about becoming pregnant. If they have a stoma, they are also concerned about how their stoma will function during pregnancy and if there are potential complications that may specifically affect their stoma function 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.

Method(s) used

We shall review the existing medical literature to create a long list of potential concerns, survey existing IBD obstetric practices and use an online patient questionnaire to assess what patients experience during pregnancy, and what information they would want provided by their healthcare teams.

Hoped for results of this research

This study will audit existing IBD obstetric services in the UK, and help us understand what patients with stomas experience before, during and after pregnancy. It will also allow us to find out what information needs patients have and provide an information resource for future patients.

What further plans are proposed for future development?

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.

This project is funded jointly by the Ileostomy & Internal Pouch Association and Kingston Trust CIO