Passing on the gene

been diagnosed with FAP like 2 years ago; I had one scope. Was told I need the J-pouch, and soon as I have polyps from one end of my digestive system to the other. I have yet to hear about a scope let alone my surgery. 

Most of my family have FAP, and most of them had children naturally.

i know the odds of my future kids having it is 50% per child, and that terrifies me. 

I was was wondering how many people considered getting preimplantation genetic diAgnosis? Did you instead decide to have children naturally?  Please tell me all you can ! Thank you 

Original Post

Before, I was thinking of the preimplantation diagnosis when I was ready to have children. However, after my first surgery with the colectomy I got an ileus for three weeks, two NG tubes, and it was the worst experience of my life. Until last week, when I got my ileostomy closure, got an ileus, got a blockage, another NG tube (this one made me vomit tons of blood and I'm still barely able to speak), and spent Christmas crying in the hospital. If you get pregnant, they recommend a C-section. That's another major surgery and a risk of an ileus, which I get if a doctor merely thinks of my intestines. I believe many women with j-pouches can give birth naturally, but then if your v tears to your a, in my surgeon's words, that would be "disastrous". From more reading, I think best case scenario in that event is trying to fix the j-pouch and creating a temporary ileostomy while the pouch heals. Which, is another abdominal surgery, and I again get an ileus because my body sucks. 

So for me, my desire to have children died on Christmas. I had names picked out and I had thought about how I would raise them to be intelligent and kind-hearted and I was always talking about my future children. When I was one and a half I tried to declare my newborn sister, which was oddly enough, on Christmas also. It hurts because everyone always called me the mother hen and a natural mother and then it turns out I have this stupid disease that I can pass on to my children, and even if I can surmount that my body is so sensitive to every surgery I just can't risk the pain and trauma again even though it absolutely breaks my heart. 

Sorry I didn't mean to write so much! I just got home from the hospital and it's been very emotional. 

Hello,

Im in the same boat as you with regards to this subject. 

I'm the only one in my family with FAP so it was all new to me. When I found out 8 years ago, i was diagnosed with colon cancer and thyroid cancer. After going through the surgeries, chemo, treatments I decided meet with the fertility clinic and the genetic counsellors and got all my info about fertility options.

One thing we learned with the genetic counselor is that you can genetically test the baby during pregnancy. So if the baby has FAP then we avoid the chance of getting any late stage cancers since they will be getting checked from day 1.

Even though my FAP experience was a little rough in the first few years, I have since lead a pretty happy life and FAP didn't get in my way. Since then, I met someone, got married, travelled the globe and have my job. I'm very happy with my quality of life and so my husband and I are questioning whether PGD is really necessary for FAP. Again, we're not sure yet and we obviously want to learn more before making any decisions. 

Hope that helps!

Zee

Girls, I am so, so sorry...

I do not have FAP, it is in my family, I lost 2 uncles to it, plus other family memebers to an assortment of other cancers. 

I got none of those. 

I got Vaginal cancer (not cervical!) due to my mom taking DES while pregnant. 

I ended up with my k pouch from a mix of a genetic disease (Ehler's Danlos), the side effects of DES and a bouquet of congenital birth defects (VATERS) that included anal atresia (I didn't even know the correct name for it until a few years ago...They called it 'unperforated anus that was perforated'!  

I had my colostomy at age 2 after a 1/2dz failed surgeries. 

So...would I have had kids if I could have? Hell yes! I tried, and tried and tried. And cried even more than I tried. I saw specialists, had surgeries, took treatments that were contradictory for someone with vaginal cancer, got pregnant and lost 6 at the end of the 1st trimester almost every time (thank you DES!  

And still, I kept trying. I was born a mom, grew up believing that I would have 6 kids and be the best mom on the planet. Tried and failed and nearly killed myself trying and I regret nothing except the fact that I never managed to carry to term. 

It would have put my k pouch at risk, surely, it would have compromised my already severely compromised body for sure but I would have suffered it all in a blink if I could have gone to term.

In the end, I had another dozen surgeries for k pouch problems, rejections, falling pouches, hernias and occlusion after occlusion...so, not having the babies did not stop me from getting sicker or having more surgeries. It just made it sadder.

I am now way past the question...married to a man who already had kids that although are not mine, have made me a 'real' grandmother. 

You find a way to 'mother', no matter what, when you need to. 

I had one of my 13 God-kids along with the rest of my extended family, over for dinner last night...he loves me like a mom and I feel like I am one when he is around. 

Did I mention that I am a university teacher too and coach kids? 

God (or modern medicine) did not find a way to give me kids so I found my own way...

From what I have heard from all of my girlfriends...I am the lucky one. 

Someone on this site once said to me that you do not have to carry a child in your body to become a mom...

Choose the kind of mom that you want to be, and be it...the kids will follow. 

Sharon

FAPqueen posted:

been diagnosed with FAP like 2 years ago; I had one scope. Was told I need the J-pouch, and soon as I have polyps from one end of my digestive system to the other. I have yet to hear about a scope let alone my surgery. 

Most of my family have FAP, and most of them had children naturally.

i know the odds of my future kids having it is 50% per child, and that terrifies me. 

I was was wondering how many people considered getting preimplantation genetic diAgnosis? Did you instead decide to have children naturally?  Please tell me all you can ! Thank you 

I will PRAY for you, I wanted to be your friend and try to help you through it but you stopped talking and never told me your name!

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