I was diagnosed with FAP in my late 30’s. I’m the genetic mutant in my family as it wasn’t inherited from my parents.
As there’s not much information out there I had spent several years when I had ‘changes in my bowel movements’ with the GP considering if it was food intolerance or IBS.
When I insisted that someone should take a ‘look’ at me before giving it this diagnosis, they did. It was then discovered that I had 200+ polyps! Within about 6 weeks I had complete bowel and rectum removal. I had an ileoanal pouch, (and a temporary ileostomy).
I personally didn’t get on with my ileoanal pouch! (Many don’t have problems with it). So after 4 years of continued, chronic toileting problems I opted to have a ‘bag for life’. I love my ileostomy! It has given me my life back. I would now say that I’m not held back in anyway.
I’m glad that I came across PolyPeople. Our experiences seem to be so varied. I find this makes the group very grounded in what information is useful to those with FAP and those around us that support us. I have had a rough 4 years with various problems. It felt like each of these problems was unknown to ‘professionals’. So I was further isolated. From this experience I have learnt so much about pain management, diet and nutrition, self-care and evaluating the essence of a problem, prioritising and researching.
I would like to think that no one should have to do that journey on their own again. That Polypeople can offer good ‘person centred’ support to anyone having difficulties, as well as to get good information out there. That we can aid in a better understanding of FAP and its impact in the family as well as developing a better awareness how diet and nutrition could be optimised after bowel removal.
To be a committee member don’t feel that you need specific skills or a lot of time on your hands. Everyone has an input or an opinion and these help move our group on and expands our possibilities. Because of the distance between us, most of the communication between members is through emails and occasional telephone conferences. There’s also an annual meet up which I personally enjoy and look forward to.