Internal Pouch Committee

Laurence Rae (Internal Pouch Coordinator)

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