My FAP journey began in the summer of 1992. That summer was supposed to be a special time for me, I was about to marry the woman of my dreams. Instead it turned out to be the start of nightmare.
After going to the doctors for the second time because of hemorrhaging I was referred to a GI doctor for a colonoscopy. The results were not what we wanted to hear, he told us that they found over 1,000 polyps in my colon. I was 21 years old and very scared. He referred us to a specialist 3 hours away to discuss our options. This is when we were told that I had F.A.P. This was so new to us seeing there was no one in my family that had ever been diagnosed with this before. I asked around and no one had ever heard of this disease including my family doctor. The decision was made that I have a total colectomy in January. This was a time for us that was very difficult to handle seeing we were just starting our lives together. to be dealing with such a rough start. The next year was a complete struggle. After that our lives were back to normal or so we thought.
As the years progressed the polyps kept getting more frequent and more in number. The last five years have been a struggle. My health has deteriorated and it seems like we spend more time in a hospital then we do at home. Countless tests, scopes, ER visits, and hospital admissions. It wears you down. I became completely disabled at the age of 43. Not how I planned my life to be but it is the life I have and I have to deal with it. I live with guilt every day because I unfortunately passed the gene on to my son. He had his total colostomy at the age of 14. Some days I want to give up but then I look at him and know he is looking to me for example for his own battle in this crazy life.
Recently I changed hospitals because I actually found a person who specializes in F.A.P. Unfortunately by this time it was too late. My polyp growth is beyond control. I will be getting a permanent ileostomy with the hopes that it will buy me some time. I spent many years not getting the proper care and now because of that the doctor’s aren’t hopeful that this help as much as it should have.
I am lucky to have a strong support system. This disease consumes more and more of me every day. Some days I don’t want to get out of bed because I know that each day isn’t going to be easy. My wife and son have taught me to not give up. On those bad days they are there to pick me up. I want people to know that you can get through this. It is hard and most days are a struggle but I chose to look at the good in my life more then I do the bad. Don’t ever give up.