Life really can be so unfair and just plain sucky sometimes! I will have your niece in my thoughts as she recovers from this surgery.
I am someone with a permanent colostomy so I just wanted to chime in to say have them check out the UOAA website for people of all ages and reasons for having an ostomy. There is a discussion forum on there specifically for just parents of young children with ostomies that could prove to be a lifeline as they all adjust. My best friend was diagnosed with FAP in her early 30s so a different experience in that she was at least an adult when all of this was thrown at her. She also had too many polyps to count, but thankfully none were cancerous so she has had no issues beyond the initial recovery from losing her entire colon. She has two daughters who are in their late teens/early 20s and they have been getting colonoscopies regularly for the past ten years or so as FAP is genetic. No signs yet for them, but that doesn’t get them off of the hook just yet either.
While it is not an ideal situation, please know she can go on to live a healthy life and do so many activities that a girl of her age should be able to, she will just need time to heal and adapt. Sending love and positive energy her way.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox