I had the j-pouch surgery in 1995 b/c I had familial polyposis. My husband and I tried getting pregnant for a year. Now we are seeing a doctor about IVF b/c I found out that my tubes are blocked from scar tissue. My doctor told us this week that we should think about seeing a geneaologist before doing the IVF. He said it can be costly but that they could eliminate the embryos that have the FAP gene. I would like to know others opinions on this and if anyone can relate.

Hi,
I had my j-pouch surgery in 1996 for FAP. I am currently 20 weeks pregnant with my first child. Like you, my husband and I tried for over a year to get pregnant unsuccessfully, then had started consulting an infertility specialist. We decided the best route for me would be to try IVF. I had the genetic testing done for me for FAP, and the gene was found. When I thought I was going the IVF route, I learned about preimplantation genetic diagnosis, what you seem to be talking about. Here, after the eggs are fertilized during IVF, they take a cell from each to determine which, if any, embryos have your FAP gene, then only transfer or freeze the ones without the defective gene. I had done all of the preliminary testing for this, and 10 days after I gave the genetic lab the payment for PGD, (2 months before beginning my IVF cycle) I found out I was pregnant! Needless to say, we were so shocked and elated!

Have you had the genetic testing done yet? I would say this is the 1st step. I beleive it is something around an 80% chance that they will find the mutation in you. If they do, they can test an embryo or child. If not, they are unable. I am not sure what your IVF coverage is like in SC, but in NJ, my IVF was going to be covered 100%. I also petitioned the insurance company to pay for the PGD part of the cycle (which my doctor said would be a longshot) and they agreed to pay half, based on my extensive surgical/medical history. I beleive the total cost of the PGD part would have been around $4000 or so.

I'm sorry this is so long. If there is anything else/other questions I may be able to answer, I'd be happy to help!

Good luck!

Dana

Thanks so much for the response!!! Congratulations on your pregnancy, as well. Have you had any difficulties so far? Are you having a C-Section? My insurance doesn't cover IVF but I may petition it since I can't get pregnant because of the scar tissue from my surgery in 1995. I did have genetic testing done in Cleveland while having my surgery. I am in the process of trying to get them to send me that information. My husband and I just started all this a month ago and feel like we are in such a fog about a lot of stuff. I just hope and pray that we do the right thing and that IVF will be our miracle.
Please feel free to send me more information, anything you think I may need to know. Also, thanks again for writing. It's nice to hear that people can relate to my situation.
Kelli (kaw1210@aol.com)

PGD is a wonderful 'add-on' so to speak as it increases your chances of a successful pregnancy. As stated above, if you have the FAP gene you can prevent implanting any embryos with that gene so you don't have a child with FAP. But in addition, they will also test every embryo for the 'standard' genetic mutations (Down's Syndrome, etc.), # of chromsomes, etc. - basically any chromosomal abnormalities. So only 'the best' embryos will be left to transfer. Often the ones that 'look' the best are chromosomally damaged and then result in miscarriage. (They usually choose which ones to transfer based on # of cells and % of fragmentation, etc. but these can often have chromosomal abnormalities which can not be seen). A good friend of mine (no GI issues) had repeated miscarriages and finally had this done. Turned out over half of her embryos had some sort of chromosomal abnormality. When they did this they chose ONE perfect embryo and transferred it and she delivered a healthy baby boy 9 months later! I have done all the infertility treatments including IVF (unsuccessfully) and next time I will definitely add this on. It just greatly increases your chances, and when you're spending tens of thousands anyway, a few extra is worth it if it reduces the chances of not having to do it again (and also increasing your chances of having a healthy baby!) Feel free to PM me with any IVF questions if you'd like. Good luck to you!!

P.S. Congrats on your pregnancy Dana!

I can't believe someone's insurance covered IVF. I wish mine did!

We have been trying unsuccessfully to get PG for 17 months now. DH's swimmies were tested awhile ago for a study he entered for money and they were fine, so I don't think that's it. I am seeing a fertility specialist; tomorrow we do the flush of the tubes to check for scar tissue but if it's there, we're pretty much out of luck because my insurance doesn't cover IVF and it is WAY expensive. I'm so discouraged and I haven't even had the test yet. We are practically out of time, I turn 39 in a few months and I'm just feeling like I had to choose between a pain-free life without colitis and a baby and I chose the pain-free life and now am paying the price 15 years later.

Dear Rockandroller - you're story really touched me. I too had my UC surgery when I was very young (19) and didn't even think about the possible fertility ramifications at that time. Well fast track 17 years later when my husband and I decided to have children and I too had scar tissue which was preventing me from getting pregnant. We did go the IVF route, successfully, but there's no doubt about it, it's very expensive. Check with your state's insurance board about what (and if) insurance companies are required to cover a certain percentage of infertility treatment. I know in Maryland insurance companies are required to contribute up to 50k. Also, fertility clinics have become quite competitive and offer all kinds of different finance programs so I'd encourage you to do some research there as well. I wish you the best of luck and hope things work out!!

Katrina

Kelli -

While I have no advice on this topic and hope for the best for you, I am extremely interested in this process b/c within the next year I'm sure my husband and I will try to have a baby and with my past year of complications I'm a little worried.

How do you know if your tubes have scar tissue preventing pregnancy - I mean what tests did the doctors do? Do they only do this after you haven't conceived in an acceptable time period? Did you have regular menstruations monthly still so there was no sign your tubes were damaged?

I apologize for so many questions. Thank you!

MA state law required insurance companies to cover fertility treatments. YOu ahve to follow a specific protocol (6 IUIS, three with oral meds, 3 with injectible meds, then you can do IVF) but everything is covered. It cost us $50 to do a fresh IVF cycle for my son. We're now doing our second cycle and it will probably cost about $100.

The best part about hte insurance coverage is that I don't feel like I have to push my body to produce a lot of eggs, or transfer a large number of embryos because of cost. I can do what is right for my body and will give us the best chance of conceiving. I wish more states would provide coverage. Or, that insurers would realize how much they would actually save if early treatment was covered.

damn, I wish we had laws like that here (Ohio).

I did want to report back that I had my ESG test yesterday and my ute and tubes are both totally clear/no scar tissue or blockages were found. We are going to try a few cycles of IUI and hope it takes.