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!

Hi everyone,

I've only just joined and I thought I would leave a comment as a FAP parent. Not sure if it will help.

I never planned to be a parent as I was determined to rid the gene from my family. I fell pregnant unexpectedly and the choice of IVF gene manipulation was taken away. Unfortunately, my daughter does have the gene. As a parent you feel guilty for something you have passed down. But with the support of the professionals such as genetic counsellors, I was made to feel like a good human being.

My family discovered the gene when family members were diagnosed with bowel cancer around the same age as each other after they thought they had piles. By that point my mum  and uncle were teenagers and had to have most of their large intestine removed due to significant amount if polyps. Unfortunately, science wasn't advanced then as it is now and we learned the hard way that polyps could occur in the upper tract. This led to my mother passing away 17 years ago

My mum and dad were always honest with me about my genetic condition. They chose to conceive knowing the odds. They literally got 50/50 as my younger sister doesn't have it but I do. I was raised to expect the screenings and possible surgeries such as partial removal of intestine. I found that helped me understand at such a young age especially when it came to my first screening at 11 years old. It has prepared me for my future and my daughters. There may be a curve ball like a health scare or in my case an additional surgery we didn't anticipate. However, I do not regret my decision to carry through with my pregnancy.

Before my mother passed, we discussed the reasoning behind her decision to try to conceive despite knowing about the gene. She explained that we all pass on defects or illness in some way but because it's the dreaded c, we tend to panic more. Not everyone will agree with this and I accept that but our gene doesn't necessarily mean cancer. We aren't bad people for choosing to conceive. I look at it as though my file in on high alert with medical professionals and combine that with my regular check ups, I'm in a better position than most of the population. Any issues will be detected early. As long as any individual is in full knowledge of their condition and potential impact.

We also researched about fertility options for my future children. We spoke to specialists who said that they could harvest my eggs and get rid if any that contain the genetic mutation. That way any eggs fertilised would be without the chromosome defect. Surrogacy was another option if my womb was not a good environment. At 16, I felt I had options.

I strongly believe it's up to every individual/ couple and we cannot judge for what are difficult situations for others. Just make sure any children with FAP have a large network of supportive family members who also understand the gene. I was able to lean upon other adults when my mum died after I turned 16.

Thanks Laura, 

I support everything that you said. We cannot (although we would like to) control what type of genetic code we pass down to our kids and even when we think that we have we may get something completely different than expected. 

We should not feel guilty about wanting kids and having them naturally. Anyone that tries to shame you for having made that choice should be publicly flogged with a rubber chicken!

I do not think that my parents expected a kid with so many problems but they got me (more than they bargained for).  My dad taught me early to face up to things, do my best and never give up. He was an optimist. I inherited that from him along with the rest. 

I am tough and a fighter, much more so than many healthy people that I know of. Am I happy that I was born this way? No. Would I have preferred not to have been born at all?  Ask me on Monday morning or 6 weeks from next Tuesday...most days I am fine with it, too busy to think about my body or my problems...but some days I curse the Gods of healthcare and medical science for being so slow.

Tonight I had a table full of food, family and friends...I shopped for 2 days and cooked for 12 hours then served and enjoyed watching them all eat.

Cooking is therapy and helps pass love on to others...

So, I am happy and do not regret my life...or my decisions.

Sharon

 

 

I know this it is a long time since you posted, but I am not internet savvy, and only have iPhone and joined this site six months ago. 

Regarding pregnacy after surgery:- My Mother had her First surgery In 1959 at age 21, and in those days the only option was permanent ileostomy. Which at that time was about a 3-4inch opening kept open will a brass ring, and she had 2 reusable bags which she used for thirty years. She had no aftercare no checkups nor to many problems until 30 years later when she was 50. When rather more radical surgery was necessary. She is still loving her life and she will be 81 next month ! ! !

She was told she would never be able to have children. They were wrong, mother had 5 children and I am the only on with FAP. All natural births and 2 of those home births.

As  for testing in early stages of pregnancy, 22 years ago I had this done at eleven weeks pregnant. (This procedure was worse that pouch surgery) The many people keen to ‘interogate’ Me before hand scared me, and at this time I failed to understand what was meant by “Even if the baby does not have FAP you will still have to have a termination” !!!  I was told the results showed that the baby did have FAP and I would now need to have me termination within the next week. The only reason I had the test is because my husband and I had just agreed to separate and my head was all over the place. I should never have gone for that test, it was in 1997, and the first time the medical people had the opportunity to do their testing, In my opinion I was the first idiot that came along. I have never found any papers published on this test as early as my test was done and have had serious mental health difficulties because of it,

As for modern day ‘ choosing a none FAP fetous” All I can say is I am very glad this was not available to my Mother, for if it was I would never have experienced time on earth. And no matter how shitty (pun intended) things have been from time to time. I thank the Divine every day for my life and all my experiences both the good and not so good.

Think of it this way, would you rather you were never born ?

I say all this with Love and Kindness. It’s just I sometimes feel that we can’t see the wood for the trees.

Kindest Regards

Rachel xx

I am all ways slow with responses due to my circumstances, but I will always respond to any questions people may have for me 

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×