Familial adenomatous polyposis also known as FAP

Dear Shy950,

I currently just got diagnosed with FAP. My dad had it and died from cancer that spread to the rest of his organs. He also had the Whipple procedure done but he refused to have his colon removed. I'm now facing a decision to make since my Gastro doctor told me that I only have 2 options either remove my total colon or get colon cancer. I'm stuck in a hard place because I'm a female only 32 with five kids. I'm scared of the procedure and I don't know what to do. Do you have any advice??

Hello mbagay,

I`m sorry for the tough time you are going through. My husband and I went through this a few years ago. It came out of the blue for us, as his dad died from it a long time ago, before anyone knew about it. We had a hard time accepting that he had to have the surgery. However, we are very glad he did, as after surgery the doctors discovered some of the polyps were cancerous. Fortunately, it had not spread. My husband was 41 and a healthy person, so he recuperated pretty quickly. Two months after surgery he was playing soccer. But the first weeks were very difficult. You will need good support while you are in the hospital and when you come out, so I hope you have friends and family close to you. You`ll be eating baby food! Oatmeal and bananas. My husband had to be very careful what he ate the first year, but now he eats everything and the worst thing is that he has to go to the washroom during the night. But he is lucky, he is watching his kids grow up, which his father didn`t get to do. Two of our three kids have inherited FAP, but with good care I believe they will be fine. I pray you and your kids will be fine too.

Thank you for responding. I was waiting for a long time for someone to write back. So how long did your husband stay in the hospital? I'm meeting with a surgeon this Monday if you read this in time what would be some important questions to ask? Also is your husband back to eating regularly or does he still need to continue to watch what he eats? How did this impact his lifestyle? Is he still able to eat like meats, chicken, etc??? I know that it is very important for me to do this I'm just scared. Scared of the surgery and scared what to expect after wards. Please reply.

Thank you...

mbagay,
I have had my whole colon removed, just the muscles of my rectum connecting me to my small intestines, and also had alot of my small intestines taken out also. I can not tell you what to do, I will not tell you what to do. But, I will say I do eat normal foods. But, I do have to ge to the rest room alot after eating. It is normal after that surgery. I have not had my Whipple for I am putting it off because like you I am scared. Also I know mine will go to cancer if not done. So I am in a hard spot also but, I am scared for I seen what my mom went through with the Whipple. But, the large colon removal, I had it done,a few in my family has and my son is having to have it done now. It is so hereditary in my family it is going down in the genes, every brother, sister, son, daughter, cousins, aunts, auncles, everyone in my family has FAP :-(. So Please be careful.

Hello, I am sorry I did not answer earlier. I thought I would get an email telling me if you answered what I wrote. My husband now eats regularly, although like shy950 said, he goes to the washroom very soon afterward, which can be inconvenient. The first year was the most difficult. He could not eat seeds, nuts, things like eggplant which have seeds in them, popcorn, big pieces of meat like stead, although chicken and fish were fine. He could not eat whole wheat bread or very spicy food. Now he is fine, he eats everything. The body adapts, it is amazing. As I said before, it is the first weeks after surgery that are difficult. Have the house ready with easy food for you and the kids before you go to hospital. You will spend more time in the washroom, so make sure the kids have toothbrushes and that kind of stuff in a second washroom or kitchen, so that if people need to do something you will not feel rushed to get out of the washroom. Important to be relaxed after surgery! My husband was in for 6 days, came home for 1 day and then was back with complications because of stress for another 6 days. He tried too hard to be brave and act normal and not lose control of his bowel and nothing was passing down below because he was so tense. Your kids will laugh because you will be happy every time you pass gas! Good luck and I will check more often to see if you have anymore questions.

I was diagnosed with FAP when I was 5. My dad, older brother and sister, and my younger sister all have this illness. My dad was scheduled for the whipple surgery last novemeber. they had to abort his surgery, he has had so many surgeries as well as had soooo much of his intestine cut out. they aborted his surgery and he ended up on life support and ammonia in both lungs. he was in intensive ICU for 2 weeks, and somehow just woke up one day. This illness is a very very serious illness and you must take care of yourself and stay on top of it. I found out i was pregnant last July but had to have an abortion b/c of this illness. If you are a female with this illness do not have kids, there are way to many risks. I was told by specialist at the Dana Farber Cancer Inst. that there's only 15% chance that both mother and baby will make it full term, and even then, it's very little chance the baby will survive, and even then I was told that the baby could be born deformed or missing body parts. I was told that a pregnant women with FAP also has a risk of getting desmoid tumors, and that the baby could possibly have tumors. This is a very serious illness and if you have it, or it runs in your family, you and your loved ones need to regulary get checked and have scopes done. i had my 1st surgery and had an ileostomy for 3 months, and then had that removed and got the J pouch. well the day i got out of the hosp. after my 1st surgery, my dr told me that if i would have waited any longer, then i would have been fighting colon cancer. I just hope everyone takes this illness seriously and learns about it for themself.

I am so grateful for your post of FAP!!my dad died 2 years ago and they thought it was bile duct cancer. Thanks to Florida laws the doctors would not release any information to me. Even though I was my father surrogate and power of attorney. So now I have been on a quest to find out if it was something genetic and if it really was bio duct cancer. Thanks to your post and many others I was able to find out about FAP. My father and I had the same Symptoms as you but since I didn't know what to get tested for I wasn't sure what I had. And I cant ask my father anymore and the doctors would not release any information to me. Every doctor I went to said I was 100% healthy and that I did not have any kind of Gastro issue. When I read your post and read about FAP I found a new doctor That would listen to me and do the blood work to test me for this! I was positive and so was my daughter and my brother and my nephews. From there this doctor gave me a referral to a Gastro specialist ( Every other doctor told me I was healthy and they wouldn't refer me for a colonoscopy) I'm 26 years old and for eight years I've had blood in my stool, Weight-loss, and a lot of pain associated with eating. But yet every doctor told me don't eat spicy food there's nothing wrong with you! After my colonoscopy they found millions of polyps they can even count them, there were so many. I had an emergency colectomy. And now I feel healthy and normal for the first time in my adult life! I wrote a long letter explaining to my father's doctor how I needed this information and how I am positive for FAP and I had a colectomy he still refuses to give me any information on my father's diagnosis. Before my father passed he had the same symptoms as me, he also had six colonoscopies done by this doctor With in the last 3 months of his life. Please get checked if you have any symptoms associated with FAP it's serious and it is a silent killer If you do not catch it in time. This can develop into a deadly cancer.

Half my mom's side has fap. I knew that I could have . It but wanted to have kids before I got checked. I am now 21 and the polyps are now in my stomach. It's making me constipated for like 1.5 week at a time. I know have to go in but I want kids. What do I do

I'm sorry but there is no way i would have kids and pass this stuff on to them. It is horrible watching your child suffer with this.

hello shy how are you i had that done to me 5 years ago i face things but grace of god pull me through it i have 2 kids now i 'm 34 doing great have it check every six months it was scary at first but i said lord keep me in your arms so you are not alone . ill be praying for you and please do it for long life. if you have question contact me. 

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FAP runs on my dad's mom's side. Several aunts and uncles died from it, my dad died 4 days after I turned 18 from Rectal Cancer in 2009. My aunt(his sister) died on christmas in 2012 from complications relating to the disease. I was diagnosed at 18 (may 2010) with FAP. I was devastated when I was told I needed my colon removed since I had precancerous polyps (and thousands of stomach polyps). Had my colon/ rectum removed w/ a temp ileostomy and j-pouch created in July of 2010(a month before I turned 19). I went through hell but I'll tell ya, if it were for all this c**p I had to go through, I wouldn't be so emotionally strong as I am!!! I get upper and lower scopes done (at once) every 6-12 months. All I cared about before surgeries was being asleep the whole time.lol. And when I go for scopes, I'm excited to get IV Benadryl since I have tearing in my J-Pouch (rebuilt rectum). It gives you the same feeling as anesthesia. So those two together.....omg! Never so excited to go to sleep till then. It's like being drunk without having to deal with a hangover. ;P