I am extremely familiar with FAP and all the problems that go along with it. I lost my children's father to it at 33 colon cancer, his brother @ 38 colon cancer. My 3 children had to be scoped yearly, and when my youngest son was 12, he was diagnosed with FAP.
He had his colon removed, and is a healthy 38 today. My eldest son was then diagnosed @ 16, had his colon removed, developed a Desmoid Tumor (caused by removal of the colon) and died at 31, leaving 2 little boys behind. When my eldest grandson was 10 (1 year after watching his father suffer and die) he was diagnosed. Like his father he had many problems, and 38 surgeries by the time he was 16!
He developed a 38lb Desmoid tumor which was removed, but he was dying. Desmoids aren't malignant, but because of their tentacle like growing, they invade and crush major organs, and by the time you know one is present, it is too late. Just ten days before he would have died, a set of 5 organs came thru for him.
He died 4 times while on the operating table, and developed Stage ll organ rejection. He had to remain in their tiny apartment for 1 year (fear of infection to the new organs) and could not eat anything by mouth for one year, he received his nourishment via TPN (intravenously) .
In Nov. 08, he was doing very well, only had one more surgery to endure and this was to remove his ileostomy and colostomy bags. The doctor wanted to wait until after Thanksgiving to do his surgery so that my grandson could enjoy Thanksgiving dinner as he wasn't able to eat any the previous year. My grandson called me at the end of November and was really down. He said he was really missing his dad, and wished he were here to toss a football with him.
We talked for 40 minutes, making plans to go Christmas shopping the following week. As we were hanging up he said "I love you grandma" and I replied "I love you too sweetie". We never got to go shopping, just 3 days later, he started vomiting blood, both his bags filled with blood.
He was rushed to the hospital where he bled to death! Unable to determine where and what caused the bleed, an autopsy was performed. I have never wanted to know the results, as I cannot take hearing of any more of his suffering. I want to remember his sweet smile and his last words to me, he was just 18.
Hannah- please remember that this poor family have had the worst luck, not all FAP stories end like this, but i think its important to be aware.