I am 25, married, and have FAP. My FAP was a spontaneous mutation (no one else in my family line has it) so it wasn't until this year that I even met one other person with this disease.
Because FAP has a autosomal dominant in terms of heredity and because some of the serious symptoms that can be involved, I have struggled with the decision to become pregnant and pass down this disease or adopt. My husband have prayed about it a great deal and are almost completely decided to have children naturally if the Lord wills, but would still be interested in any others' thoughts or advice. My FAP was a spontaneous mutation (no one else in my family line has it) so it wasn't until this year that I even met one other person with this disease.

Hi Lindsey,

I don't have FAP...but my husband's dad did. (he ended up dying from colon cancer later on).
My husband and some of his siblings get tested every 2 years right now and when they get close to their father's age at diagnosis, they will be tested every year. So far, none of them have it.
I know that with you having it, you give your child a 50% chance of getting it. (I believe)
It is pretty scary and no one can really make the decision for you to have your own children or adopt. Even when you adopt, the child could end up with some kind of genetic disease later on.
I hope someone comes along with experience to better help you.

Lindsey,
I can't speak for having FAP but I can relate to agonizing over whether or not to try and have children or adopt. I put several posts out there on the subject myself. I will tell you this, that whatever you decide be confident in your path. There is a great deal of peace with reaching a decision and going with it instead of battling back and forth all the possibilities.

I guess I would look at it this way: you have it and you're okay, right? If your children did get it there's a great chance that things would be okay. And if you trust God and His wisdom in giving you children then you have to trust Him in how their lives will play out as well.

My husband and I, after much agonizing and prayer have also decided to have children naturally if we can. If, after a year and half we haven't been able to get pregnant then we will pursue International Adoption.

Children are a gift from God and I hope you're blessed with such a gift whether it's through natural means or adoption.

PM anytime if you want to chat.
All the best in making your decision,

Lori

Everyone is different and has their own views on this subject. I don't have FAP but I do have Mixed Polyposis Syndrome which is similar, but less common so there is not as much info on it as FAP. My geneticist has said that they are not sure at this time what percentage of a chance there is that I would pass it on to my children.
I was diagnosed with colon cancer at age 23. It was totally out of the blue as I am the first in my family to have this occur. I know for sure that I do not want to take a chance and pass this on to my children. I would be devastated and think it would be very difficult to watch a child go through the surgeries and have to deal with the emotional and psychological effects.
I do see myself having a family and being a mother. Either through adoption or surrogacy. Their are a lot of options and I personally do not want to conceive knowing that I could pass on my damaged gene.

Greetings! I, too, am the first one in my family to have FAP. I never had heard of it until I got my diagnosis! I had already had two lovely girls. I found out about my FAP when my youngest was almost 2 years old. I thanked God that I was diagnosed after having my children. The girls have made my life sooo much richer, I don't know who I would be if they were not here. I am not sure what decision I would have made if I had my diagnosis sooner. Each of my daughters have a 50% chance of having FAP. i was freaking out over that and feeling very guilty until they were ill this year and diagnosed with Celiac Disease - another condition that I had never heard of. The girls are gluten-free now and healthy. We all have GI doctors and talk about poop and intestines more than most households What I have learned is that we can not possibly see what God's plan is for us or for our children. Love each day. Live each day to the most. Pray, as you have and then go forward with all of your might. P.S. I also met a woman who has become very dear to me through internet. She and her family have FAP. She has helped me through learning stages. She had one child (he did not get FAP) and adopted another. If you would like to contact me about more info, please do so!!! Where do you live? I am in Michigan and the woman I met is in Arizona.

Hi,
I have FAP and am also the 1st in my family with it-another spontaneous mutation! I was diagnosed at 19, and am 31 now. My husband and I discussed the possibility of our children inheriting the disease, but my thoughts were that as bad as FAP is, I am dealing with it well, and I would have to have faith that our child(ren) would be fine too.

We had a sweet baby boy 9 weeks ago, and I will be thinking about having genetic testing done for him shortly, mainly because I want to know one way or the other. Of course, I pray he has not inherited it, but either way, he is absolutely perfect!

Let me know if there's any other help I can offer.

Dana

Hi lindsey,
I have just recently joined the board too. I also had familial polyposis (j-pouch) and had my surgery when I was 19, I am now 30.

IUI is intrauterine insemination, they will most likely give you meds so you develope several follicles, once it's time to release your eggs they may give you a shot to make sure you have ovulated, your hubby will have to give a seman sample and they will insert his seman into you witha a very small cathiter so the sperm goes into the top of your uterus where it is closer to your tubes. I have 1 failed IVF and will be doing another IVF in the near future. My surgeon told me that being pregnant would not cause any problems with my pouch but when it was time to have the baby I would have to have a c-section.

I hope I was able to help and answer your questions. I am hear if you need to talk.

Jenny

We all have our opinions, so i'll share mine, though i'm sure i'll get flamed for this somewhere...but so be it.

Personally, having been diagnosed with FAP two years ago, and the stress/anxiety/fear/depression/etc that being diagnosed AND also having already developed into stage 3 colon cancer...i do not have any mixed feelings at all. I would NEVER risk having children naturally with even the slight risk of passing it on.

while it may be true, that you could pass any bad genes along you may not know about, OR some other terrible disease could always pop up. i suppose that IS a risk that anyone takes in having a child.
BUT the simple fact that i KNOW already about one genetic thing, which many people don't have the luxery of that foresight, in advance, is plenty enough of a sign that I am someone who should not have my own children. plain and simple.

i view it as rather selfish actually. There are more than enough children out there who need love and homes, why would i go through all the added stress and trouble to bear my own biological child knowing what could be (much more of a known fact than thinking about all the other 'what-if' factors)

i can't say that when i was with my fiance going through treatments, surguries, etc. (after we'd already made the choice to never have biological children...set in stone by me having my fallopian tubes cut) that i didn't wonder...of course i wanted to be able to bear a child to the man that i loved and wanted to spend the rest of my life. of course i wanted to be able to start a family. and i knew deep down he would have loved to been a dad, despite how much he reassured me that he really didn't want kids. It broke my heart to know that i couldn't do that basic right of being a woman.

BUUUTTTT ultimately, everytime i thought of it, and felt like that, then i would turn to my own turmoil of dealing with this bastard of a disease. maybe b/c you have just been diagnosed, maybe you have not been exhausted by the sheer amount of maintenance, etc and overall lack of control FAP can render people. maybe you think "if they get it, i've been okay, and they can be okay too."
and yes, there are studies n such being done. But knowing that the only ACTUAL form of "cure" (and it's not even a cure at that) is to surgically remove an entire organ...no if's and's or but's...to knowingly risk putting a child through that JUST so that i can have a child with my blood that looks like me??? NOT worth it.

Maybe it's also b/c my mom has worked all her life in a nursing home for handicapped children as well as child welfare kids and babies rescued from abusive homes...maybe that's also instilled in me the fact that there are far too many children already out there that need homes, and the lengths that people go through to have their own child...not once has anyone been able to justify to me why.

so...sorry, that's my own personal rant on the subject. i do not mean to make you or anyone else in this thread feel bad. i just think about this scenario often.
I see my mom racked with guilt every day since i've been diagnosed. i see her cry and sob WAAAAAYYY too much than i care to. I've heard her tell people with WAY too much pain in her voice how she'd sacrifice herself in anyway to allow me to NOT have to go through all i do. I deal with the stress and burden of trying to 'shelter' my mom by not telling her how depressed and hopeless i get sometimes..b/c i just can't bear to bring more guilt to her...

that alone will remind me every day of my life why i do not mind at all that i cannot have my own children

Thank you all so much for your input! By the way, I reread my post and was appalled at how unreadable it was. Please excuse me: I had a splitting migraine at the time I wrote it and was not thinking on all 4 cylinders. That being said, again, thank you all for your kind comments. We have a bit longer to think and pray about our decision because I also have fibromyalgia and am in a pretty bad flare up with it right now, but I just started working with a new specialty clinic about which we are very prayerfully hopeful. As I have time, I hope to be able to talk more with those of you who offered further advice/support. Questioning your fertility isn't the funnest situation to be in, but I am so glad that God has used it to bring me into contact with other people who understand and are dealing with the same problems. Thank you all again!