Ileal Pouch Registry

The ileal pouch operation or restorative proctocolectomy to give it its medical name, was introduced in the 1970s by Sir Alan Parks and has transformed the lives of countless patients world wide with ulcerative colitis and familial adenomatous polyposis (FAP).

Before that time patients requiring surgery for these conditions required procedures involving removal of the entire large bowel including the anus and the sphincter muscle. Although this was very successful in restoring health and normal work and social function, patients lived their life with a permanent ileostomy. Restorative proctocolectomy avoided this by removing the diseased bowel down to but not including the sphincter muscle. A pouch was then fashioned out of small bowel to create a new rectum and this was then connected to the anus.

The operation was usually carried out utilizing a temporary ileostomy to help healing of the stitch lines. This was then closed by another operation some weeks later. In most cases the patient had satisfactory bowel function through the anus. In a proportion complications ensued and these sometimes led to a permanent ileostomy becoming necessary in a small proportion of patients.

The First Ileal Pouch Registry ReportRestorative proctocolectomy is a complex and specialist operation that requires experience to perform to a high standard. The Association of Coloproctology of Great Britain and Ireland first initiated a register of ileal pouch operations in 2005. This was re-launched in 2010 in collaboration with Dendrite Clinical Systems a company which has a world wide reputation in the construction and management of databases. The principal aim of the registry is to promote high standards of care for patients undergoing restorative proctocolectomy. Although this is a voluntary database, surgeons increasingly recognize the need for recording the outcome of complex operations. Indeed, very successful precedents for this already exist in heart surgery and bowel cancer surgery.

2012

The First Ileal Pouch Registry Report was published in July 2012 at the Annual Meeting of the ACPGBI held in Liverpool. IA was not only present at the meeting, but had generously supported some of the costs of printing. The report was the first of its kind to be published anywhere in the world and the demo version of the Ileal Pouch registry can be accessed online here. It describes the national experience of nearly 2,400 patients with ulcerative colitis and FAP undergoing restorative proctocolectomy.

The report has been endorsed by surgical and non-surgical professional bodies, the latter including Crohn’s and Colitis UK and the British Society of Gastroenterology. We were very pleased to have the endorsement of Professor Sir Bruce Keogh who is the Medical Director of the NHS. In his support of the Ileal Pouch Registry he said ‘every surgeon should be able to describe to both peers and patients what they do and define how well they do it. It is only by embracing this philosophy and collecting data that surgery will advance and that patients will be given adequate information on which to base difficult choices.’

Since publication of the first report three months ago, the number of patients registered has increased to 2633 by the end of August and 207 hospital units have registered, some of them abroad. Nevertheless only about one half of the pouch operations performed in the UK are being entered on the database. We are determined that this figure should increase to as near 100% as possible. Patients can help by asking their consultant if he or she is a registered contributor to the Ileal Pouch Registry. Over the forthcoming years we hope that the Ileal Pouch Registry will achieve its primary aim of raising standards in the performance of restorative proctocolectomy in the United Kingdom and Continental Europe. The continued support of IA will be essential.

2017

The 2017 ACPGBI Ileoanal Pouch Report was released on 3 July 2017. Again with IA as sole sponsor, the report covers the surgical outcomes for ileoanal pouch surgery from over 5000 patients and around 150 surgeons. The 2017 report reports data since the first report was published in 2012, also sponsored by IA.

Since the development of the ileoanal pouch in the late 1970s, patients identified as suitable candidates for surgery are offered a continent alternative to living with an ileostomy. This has had such a positive impact on the lives of many.

Such complex surgery is, however, not without complication. With around 400 new pouch surgeries being performed annually, the Registry becomes an important reference for patients wishing to learn more about surgical outcomes and success rates. In addition to the ability to speak to someone living with an ileoanal pouch, patients are more empowered to make an informed decision when choosing the best option for their lifestyle preference.

If you would like to speak with someone living with an ileoanal pouch, contact IA and we can put you in touch.

For more about living with an ileoanal pouch (or an ileostomy) contact IA on 0800 0184 724, email  This email address is being protected from spambots. You need JavaScript enabled to view it.  or visit pouch.iasupport.org

The main report is available here: 

https://www.acpgbi.org.uk/content/uploads/2016/07/Ileoanal-Pouch-Report-2017-FINAL.compressed.pdf

A shorter version for patient and public review is here: 

https://www.acpgbi.org.uk/content/uploads/2016/07/Ileoanal-Pouch-Report-2017-Patient-Summary.pdf