Third-Generation, Pre-vivor

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Hi, all! So first of all, I found the link to this map here: https://www.facebook.com/groups/257034824414129/ There are tons of online resources for us. I especially love j-pouch.org, which has its own FAP section and a MASSIVE forum for you to rant, get advice, ask about doctors, etc. 

I'm a third-generation FAPer. My mom's dad died at 43, back when FAP was thought to be Gardner's Syndrome (it got its own definition/name in 1986, I believe). My mom was tested at 16 only because her dad died so young, and they determined her results as "inconclusive." So she went about her life, and when I was 3 she started to have some colorectal cancer symptoms--minimal bleeding in the stool, that sort of thing. She was 29 when she had her colon removed, but luckily the cancer wasn't at a point of spreading. 

I got tested when I was 20 (2014). My colon was completely carpeted, not an inch untouched by polyps, but none of them were cancerous. Some of them were a year or two off, according to my GI, so I had my colon removed just a few months after my diagnosis. I went into the hospital healthy with no other FAP symptoms, so recovery was easy (extremely painful, of course, but easy). My surgery was a one-step laparoscopic ileal-anal pull-through, and I spent eight days in the hospital. 

My mom started digging for some specialists in our area and found four. Mind you, this was MONTHS of searching, and she only found four in all of Southern California. So she's with a specialist now, who's basically been directing all of our GI-related medical needs, even though my referral to see him was denied. For the first time ever, almost at age 55, my mom had her entire digestive tract checked. No one had ever done that for her before, and you guys, that is SO important! FAP affects the entire digestive tract AND the central nervous system. So, you know, everywhere. 

They found a polyp in her ampulla vader, and it was so big they had to cut it into three pieces to remove it, but no signs of cancer! So she's all good. And because of that, I harped my GI doctor to check my entire digestive tract, and they found and removed some small polyps from my stomach a couple of months ago. 

So we're doing pretty well, traveling around with our family and friends, and things are looking good!