Hi! My name is Lisa. I am 27 and was diagnosed with FAP(familial adenomatous polyposis) and colon cancer in 2005. Had my first surgery in 05 and takedown in 2006. My youngest daughter has been diagnosed with FAP also.


Lisa

Hi Lisa,
I am 20 years old and I too have familial adenomatous polyposis. I'm having my first surgery tomorrow morning (total proctocolectomy w/ ileostomy)and my second one (takedown) three months after that. I wanted to express my condolences that you have gone through cancer, and that your daughter has been diagnosed. Please do let her know she is not alone and we are all in it together. Any way it is really nice to talk to somebody that has gone through the same situation. I am here if you ever need to talk!

--Katie

Hi, Lisa and Katie! I was diagnosed with FAP in 1981, when I was 26. I can't believe it's been almost 30 years! Would have been diagnosed sooner if doctors had taken me seriously when I complained about bleeding and frequent bm's. 5 different dismissed it as just hemorrhoids! It's a miracle I had not developed cancer by the the time I finally got the surgery; but several polyps were very close to it. Got it through my mother. She and 3 of her 5 siblings had it. Her mom had it and died of colon cancer in the early 60's. Several of my cousins have it also. 2 of my 4 siblings have it, as does my only child and one nephew. So far, my other 4 nieces and nephews are clear. I had the Park's Pouch (S-pouch) done in '81. We knew nothing about FAP because my parents divorced in '61 and we kids lived with dad. We had occasional contact with her over the years, but she never mentioned the disease or her having surgery for it until after I and my brother were diagnosed.

Lisa, how old is your daughter; must be young! I didn't know they could diagnose it that early. They told us it wouldn't show up until at last age 11 or 12. My nephew was diagnosed at 19 and my son at age 31.

Hope all is well for you now and no sign of cancer! And that your daughter will be alright, too.

Never knew anybody else besides family with this disease. My doc told me that it is so rare that most docs never see a case of it in their entire careers and that all sufferers are related somehow, even if many generations back.

Katie, how did your surgery go? I suppose you're still pretty sore yet, only a week post op? Hang in there; it gets better! Best advice I can give is don't eat eggs! The odor is horrendous! I couldn't eat eggs for over a year. It will make for a lousy Easter if you love the eggs!

Marlene

Hi Katie,
Hope your surgery went well! How are you feeling? The first few months after surgery can be pretty rough. If you have any questions I'm here. Hope you're feeling well! Thanks for the support!

Lisa

Hi Marlene,
My case was a spontaneous mutation. Neither of my parents have it and all my siblings are negative. My daughter who is 5 was diagnosed at a little over a year old. My older daughter is 8 and is negative. They have isolated the gene that is mutated now so you can do DNA testing to find the mutation early. She has undergone many ultrasounds because children with FAP up to the age 5 are at an increased risk of Hepatoblastoma (liver tumors). She tested negative for that each time...thank God!

My doc told me that FAP accounts for 1% of all cases of colon cancer. It is very rare and I had never heard of it until I was diagnosed.

Thanks for the support!

Lisa

Hi Lisa....
I never heard of FAP either, until I had my first colonoscopy..my doctor woke me up before the drugs wore off, and while I was in a stupor, told me that I needed a colostomy bag..I almost flipped....then a cat scan was done, along with an MRI, and I had full blown colon cancer, with spots on my liver...what a disaster that was....my grandmother on my father's side had the disease, and I got hit with it...my cousin, her other grandchild, has alot of polyps, but nothing cancerous....I got it ALL...but after the age of 30, it is xcalled AFAP, because it didn't show up any earlier...al I know is that it has been HELL...both of my parents and my aunt died while I was undergoing treatment, and that DAMNED temporary bag...that was almost worse than the butt burn that I experience now..it fell off, then I got a rash from the adhesive, it was a NIGHTMARE...I just got off chemo this past February after my second round with colon cancer, and I had the reversal last July...you NEVER saw someone run into a hospital to get admitted so fast ..I was so excited to get rid of the bag that they couldn't knock me out to take off the bag ! Tomorrow I go see my oncologist, and I am scared, but I think everything is okay....and remember this...I have a very young surgeon, who I thank God for, and she has seen FAP before..it's not all that uncommon...let me know how you are doing.....

Hi Lisa, Marianne, and Marlene:

I know its been forever since my last post. These last months have been so hard with lots of transition even still. Marianne how are you now? I know this month will be a year since you got off chemo? Its amazing the hell we can endure to stay alive. and you are amazing for the strength you have had through it. please write back i would love to hear how you are doing.

@lisa & marlene:
My first surgery was absolutely the most hell i have ever been through in my life, worse than i could have ever thought it would turn out. but as marianne said, lol, you never saw someone want to get admitted so bad so fast! i had complications with the first surgery, my intestine shutdown, the cause being my abdomen muscles swelling up around my stoma, the the swelling never went down and kept gettin worse, allowing nothing to pass. then blocked up my intestine so bad i would eat.. then throw up the same thing the next day.. nothing would move through and woo eee.. ill tell you i still get chills when i think about the pain.. it makes me shiver.. i was in the hospital for a month and i felt id never get out. That was the only time in my life i ever felt like i was dying. i still am so weak.. i think the only reason i function and really can eat anything is because i am on methadone.. i weigh about 80 pounds now. i eat but still gain no weight... just keep losing. can anyone help? this morning i feel so sick.. cant stop sleeping.. my abdomen is stiff.. tender sore.. stomache sick.. not passing anything.. ?

oh and i have another question if ANYONE can help id really appreciate it!!..
I havent had a period since my total collectomy.. has anyone had this problem? I'm worried i am becoming sterile.. i still want kids


Thnks all, much love & peace always

Katie

Hi Katie,

The first few months are the hardest. Sounds like you've had a pretty rough go of it. I'm so sorry it's been so hard on you. My temp. iliostomy was awful. I couldn't get a good seal around it and the enzymes literally ate my skin around my stoma. It was miserable. I lost so much weight before and after surgery. I am 5 '10 and was just over 100 lbs. Being weak and tired is normal. I remember soon after I came home from the hospital I decided to take a shower without a bench to sit on....it took all my strength...my hubby had to come in and lift my legs over the side of the tub because I couldn't even pick my leg up that much. I slept the rest of that day. I can look back and laugh now because I'm just so happy to still be here!!

I don't know much about the fertility issues because I had already had kids before my surgery. We did decide we wanted a 3rd child, but I never got pregnant and I don't want to do fertility treatments. I'm blessed to have my beautiful daughters. You should talk to your doctor about it.

I hope things look up for you soon. In time your body will adjust and you'll feel great. I feel better now than I had in a long time before my surgeries. Keep your chin up and God bless!

Lisa

Hi kvan. I did not have a period for 6 months but it did return.It is a common issue caused by trauma to your body,and you should visit a ginecologist. It should come naturally or should be induced by medicines.

its been ten months now & i guess im hesitant to go to the gyno cause i think they are just going to want to put me on bc.. i cant take bc. i gues si better suck it up. lol

You will not start your periods again until you get your weight up into a more normal range. Mother nature is pretty smart in that she makes it impossible for you to get pregnant if you are not physically able to safely carry a baby to term. Your long term fertility will have more to do with whether or not you have scar tissue on your tubes and/or ovaries.

Jan

Thank you jan you are so knowledgeable and helpful! A true blessing to this site!