Internal Pouch Committee

Steve Ashdown-Phillips (Internal Pouch Coordinator)

My involvement with IA started in 2005 when I was looking for information on life with an internal pouch. My world had been turned upside down! During my first check up after leaving hospital, my surgeon dropped in toour conversation, quite casually, you’d be a good candidate for an internal pouch! I had just started to get use to life with my ileostomy and was at last starting to feel fit, well and looking forward to getting back to work.

What to do next? I was still feeling emotional, vulnerable and a little overwhelmed and now had to decide if an internal pouch was right for me. Luckily, I found IA. After contacting National Office, they put me in to contact with several ‘pouch owners’, not all with good outcomes and this enabled me to make an informed decision. I have had a fully functioning pouch since 2005 and quickly realised that peoples’ outcomes varied dramatically, both mentally and physically and with around 400 pouches being formed annually, feel passionately that there is a need for good quality professional support.

In 2013, I attended the 3 day Effective Visiting Skills for IA Visitors and I am glad to say that I am now a fully certificated IA visitor and put to good use the training received on a regular basis. I found this a most interesting and exhilarating course that has uses that can be applied to everyday situations.
I have served as chairman of the executive committee and been an elected representative as well as serving on behalf of Surrey, Berks, Bucks & Oxon and Coventry & District committees. I met my wife Sally who has an ileostomy at NC 2011 (Windsor) and we tied the knot in September 2013 so you can see that I take my role for IA seriously!

IA has a great pedigree and we should be very proud of the fact that it is still going strong, 60 years after its conception. I feel passionate about its future and after being elected to the executive committee as pouch coordinator at NC17, I am relishing the opportunity to serve on your behalf and continue the good work that has gone before me, and look forward to an exciting future and working to enhance our profile nationally.

Email internal.pouch@iasupport.org

Lisa Allison
Pouch Nurse Specialist

Sam Evans
Pouch Nurse Specialist

Laurence Rae

I was diagnosed with ulcerative colitis in 2002. I had a major flare up in 2010. My weight declined from over 14st, to only 9st 8lbs. I was admitted to hospital as an emergency. After IV infusions with no major success I was introduced to the surgeon and my large bowel was removed.

My health rapidly improved and my weight recovered to 12st 7lbs. I was the fittest I had been for 20 years. At a routine meeting with my surgeon he introduced me to the idea of an internal pouch. The pouch was formed in May 2011 with takedown in August 2011.

In September my health got worse and my weight fell to 9st 10lbs. I was so weak I could not walk the ten steps to the toilet from my bed. I had blood tests, and was found to have dangerously high levels of potassium and rushed into A&E. I had a double blood infection, and pneumonia. Things got worse and diagnosed with a hole in my right lung.

Seven weeks later I came home. I had a pulmonary embolism 120mm by 70mm. Six months later the hole in my lung had disappeared.

I was prescribed Humira and ciprofloxacin and my pouch improved. I am now a healthy 14st. I still take Humira.

I had a very tough time, my family fully supported me, and I managed to continue work as a civil engineering consultant.

Overall, I feel great and have no regrets. I now have regular calprotectin tests and the levels of inflammation in my small bowel and pouch have fallen from over 600 to approximately 100.

If I could relive my life again, I would make the same decision.

Email Laurence.rae@iasupport.org