Okay, it�s scary to think that your body has suddenly turned on you, but it�s not the end of the world. Remember, this is YOUR body, YOUR life. What you make of it is what you end up with.
The first thing to remember is that you will live through it. Yes, it will be scary, yes, it will be painful and, yes, at times it will be bloody annoying. But, if you take control of it you will go on with your life.
Okay, so you�ve had your large intestine removed. Okay, if you were anything like me, then you woke up in the recovery room, flexed your stomach muscles and thought �damn, they really did do it�. I�m sure everyone thinks the same thing. It�s a natural reaction.
So is the anger. So is the denial � just remember, this is not a river in Egypt. This really is happening. Now that you�ve got all that out of your system, you�re ready to move on. C�mon, the rest of your life awaits you. The first thing to do, now, is to think. How can I prevent cancer � or, more bouts of cancer if you�ve already had some? Easy. Well, we know it�s not that easy but the thought processes are. As long as you keep your head and don�t think about the scary bits.
About the best way to prevent cancer � either first or second bouts � is to be monitored. Okay, it�s bloody invasive and downright embarrassing but just think � you might be in my boat � no veins and hard to sedate for those gastroscopes and endoscopes. General all the way!
Anyway, once you�ve made up your mind to keep getting checked, make sure you have a copy of the report and make sure you get someone to explain it thoroughly. Like, take polyps on the ampulla in the duodenum. These are nasty little buggers and the gastro-entorologists don�t like them because if they take some of the ampulla they remove some of the functions of the bile and pancreatic ducts and you can end up with pancreatitis. Hmm. Forgot to ask what that means.
But, of course, FAP being the perverse creation that it is, polyps cluster around the ampulla. They just want to cause problems for us. It�s like Frank said. While you�ve still got your colon, there�s only a 4% chance of polyps in the duodenum turning cancerous. Once the colon�s removed the chance goes up to 22%. Always love the perverseness of this disease.
Another way to look at this is that you are unique. Well, fairly much so. I mean, there�s only 1% of the world�s population has FAP and if you have a desmoid, you�re part of only 1% of that 1%. Anyone got a mathematical calculator? I have no clue how rare that makes us. But, again, we�re unique. Bloody APC gene!
Now, being a FAPer myself, I�m not sure of a lot of the other things that HNPCC people go through � although, girls, you have to be doubly careful of your reproductive system. I think it�s only ovarian cancer that is related to HNPCC but I may be wrong. So, you have double checking to do � or, was it triple? Dunno, but make sure you do. After all, you�re in control of this, no one else.
That goes for doctors and surgeons, too. You can always say �no� and tell them you�ll take their opinion under advisement. Although, I forgot to tell my surgeon today that I intend to live forever. Ha! He�d prob�ly agree with me.