Because my father was diagnosed with FAP before I was born, I was lucky that my family already knew about the condition and the treatment when I was diagnosed aged 8.
I had my colon and rectum removed when I was 12 and replaced with a pouch. I then had a permanent stoma (ileostomy) when I was 38.
Given long periods with both the pouch and a stoma, I feel well positioned to help others going through the same thing and particularly if at a young age. I played rugby to a high level until the age of 20 and have continued to regularly exercise my whole life (including running the London marathon in 2014).
“I have never found that either the pouch or the stoma has held be back from doing anything and that is the message that I would like to pass on to anyone that is facing either procedure.”
A work colleague introduced me to a friend with a stoma when I was told I needed the ileostomy surgery and that single conversation back in 2016 was a massive help, even with my prior knowledge of FAP.
So I would encourage anyone – including family members – to reach out to one of the Polyposis Patient buddies and have a chat at any stage of your journey. It really is a great initiative.