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IA - The Ileostomy & Internal Pouch Support Group

I’ve never written a blog post before but when Colitis Ninja asked me to write about the charity I volunteer for I couldn’t resist. I am the Internal Pouch Co-ordinator for IA - the ileostomy & internal pouch support group which is the national charity for those with ileostomies and pouches in Great Britain and Ireland. Our primary aim as the Internal Pouch sub-section is to look after the interests of those with pouches, whether that be for IBD or another condition.

So firstly a little bit of background on me and how I got involved with the charity. I was diagnosed with Ulcerative Colitis back in 2009 after a very short spell of an acute flare which left me with toxic megacolon requiring an emergency subtotal colectomy. After a few ups and downs, several complications and another operation later I was discharged from hospital with my new “temporary” ileostomy. One of the first charities I came across in the early stages of recovery was IA after doing some research on the internet. Initially I became very active on their online forums before eventually becoming a member and going to both local and national events. I slowly found myself getting more and more involved with the charity whilst also going through further surgery of an ileo-anal pouch construction (j pouch) and takedown 5 months later. I joined the Internal Pouch sub-committee in November 2010 and became Internal Pouch Co-ordinator and chair in April 2013.

Well firstly as I mentioned we look after the interests of those with an internal pouch across Great Britain & Ireland. We help to educate healthcare professionals by providing patient experience talks at a number of study days and masterclasses. The majority of us have been on IA’s visitor training course and speak to people thinking about surgery about our own experiences with a pouch. All the pouch literature produced by IA is reviewed by us. We also organise various events, the main of which is our Pouch Information Day which runs annually. This is a day of talks and workshops from surgeons, pouch nurses and other healthcare professionals on all aspects of pouch surgery from how they are performed, to possible complications, aftercare and what exactly its like to live with a pouch (for better or for worse). We hold social evenings throughout the year for people to get together and meet others. Many of the people who attend these have never met anyone else with a pouch before and are grateful for the opportunity to speak to others who understand their condition.