My Journey Through FAP Diagnosis and Complex Surgery

Hi, in '08 I was diagnosed with FAP. To prevent colon cancer, I had my entire colon removed and a J-pouch put in. I had a temporary ileostomy. Once it was reversed, everything seemed to be going well until the fall of '09 when I started to notice my stomach was swelling and hard. I didn't look into it; I just thought it was scar tissue. In April of this year, I had my yearly exam with my OB-GYN. He said he could feel that I had a mass of some kind growing and ordered further testing. He determined that I had a fibroid tumor attached to my uterus. We scheduled surgery for June 16th. I woke up 3 weeks later; it turned out to be a desmoid tumor the size of a Nerf football attached to my small intestine. My unqualified OB-GYN removed the tumor without even consulting with my family or myself. Within 48 hours, my blood pressure was dropping, my heartbeat skyrocketed, and I was transferred to the hospital where I had my previous surgeries. I was put into a chemically induced coma. The doctors did not know if I was going to pull through. When I finally woke up, I was a mess. I had to relearn how to walk; that was really hard. I had no voice for 2 weeks. I had to do physical and occupational therapy, and I had a permanent ileostomy bag. Needless to say, I was in shock. I spent the entire summer in the hospital, and the hardest thing for me was I couldn't see my little boy for the first month and a half, and when I did, I was too tired to do anything. It's been 4 months now since I've been home, and things are going okay. I have my good days as well as bad days. I only have between 5 and 8 feet of my small intestine, so I'm on TPN. That's how I get all my vitamins and electrolytes; therefore, how I'm surviving because I have a large volume of output. Well, that's my story, and I'm just looking forward to getting better.

Hotmama- I hope your good days outweigh the bad ones and that things get even better for you. I'm keeping a happy thought for you!!!