Saturday, January 18, 2014
Expecting the Unexpected
Familial Polypisis information, awareness and groups are spreading and growing like wild fire since I was a kid. People outside of bowel disorder groups still don't really know about us, but so many more within such health groups do. As a kid, I only knew one person outside of my family with this disease. Because of that, I've always felt a special connection to every FAPer.
I've mentioned in an earlier post that my mother, grandfather and likely some of his siblings were also FAPers. I didn't really understand what that many until I was diagnosed. Before that I knew what an ostomy was and how to take care of one and how to live with one by watching my mother and grandfather. I knew they both had cancer and were doing better now. I didn't know I'd be joining them or there was that risk. But I don't think my parents really knew either or at least didn't expect me to be diagnosed in grade school but thought it might be something I'd have to be tested for as an adult. After all, that was when it hit my mother and grandfather. Even after I was diagnosed, we didn't expect me to live with an ostomy for six years. The surgeon had prepared us for just three months until everything went terribly wrong.
Through all the growing FAP groups I've gotten to know other FAPers and it always amazes me when I come across someone and they were the first one in their family to develop the mutated gene. I definitely didn't expect any if this for me but I also wasn't completely unprepared due to having family members with FAP and ostomies. I can't imagine being the first in my family and to be the one who figures it all out, endures it all and potentially prepares their future generations for what may be heading their way. Although it would also be nice to know that no one prior had to go through FAP, perhaps it will end with you if your children are the lucky 50% and living without the fear or stress prior to being diagnosed.
As I've discussed before, my goal is to end my family's cycle of FAP, even if that means I have no children myself. But I think a lot of that comes from seeing how its ravaged my family through the generations and I'm the last born to have been diagnosed, my aunts and cousins have all been cleared. Perhaps if I was the first diagnosed, I wouldn't be obsessed with being the last.
There's definitely advantages to both the expected and the unexpected, it just depends on your response. And even when we do our best, we're never completely prepared. We just do our best with what we know.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.