30 Years with FAP

Hello, I am not sure where to start, I have never posted on any forum before, but after browsing this site for a few days it seems to be a friendly place, also one with people who have a lot in common with me. I have begun to think I would like to share my story, as over the years I have gained a great insight and experience of all things FAP.

But what appeals to me most is finally finding a place where I do not have to deal with everything all by myself any more. I have waited 30 years to speak to others with this condition just someone who truly understands. Saying that, I do still have my mother, but sadly apart from the FAP we have nothing in common. Also because my mother is a “medical miracle” and the family’s hero, I have never had any help or support from my family. 

I don’t know if this is the right place, for me to share things, maybe you could let me know. 

One thing that surprises me greatly though is, that how many of the people on this forum have gone straight to pouches. I had my first surgery at age 21 which was a total colectomy with ileo rectal anastomoses (IRA). In fact my surgeon at the time would not consider a pouch at such a young age. After my initial recovery period of 2-3 months, I continued with my career in the Army for another 7 years. I know that medical opinion has varied over the years, but I am very happy I had my rectum for those extra 20 years, I wish I still had her I miss my rectum very much. Although it was not always plain sailing it was certainly much more manageable than my pissy pouch.

I had my rectum ‘excised’ and pouch created in a two stage procedure nearly 10 years ago and have never been well since. I am now aware that it is probably due to some of the drug trials I naively participated in, that changed the polyp loading in my rectum, which necessitated in the removal of my beloved rectum - oh the Follies of Youth !

Rather a longer post than I anticipated,  also a little more serious at points than intended, but more than enough for now. I am just happy to have found a place speak.

If anyone has got this far I thank you kindly 

Rachel

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