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S
Hi there,

I had surgery in 2000, it was an emergency operation and I had the operation in 3 steps.
I live in Europe.

Now, years later, I´m trying to conceive. I have had 3 UIU and 3 IVF-cycles, one of them failed due to ovarian hyperstimulation syndrome, 3 times failed with frozen eggs.

It seems to me that the doctors know very little about the possible connection between having Colitis and a J-pouch so I really need your help/advice on this.

Did you get any types of medication (Humira, prednisolone, etc?) while going through the IVF cycles? How was it administered?
I haven´t got any of them on any of my IVF-cycles.

Did your doctor´s take any particular precautions?

Maybe it´s due to a lack of egg implementation because our immune system can act up in a situation like that?

They cannot find any obvious reason for me not getting pregnant, everything looks fine and there is passage in the fallopian tubes.

They usally just transfer 1 egg per cycle, max 2. How many do you get?
I hope to get 2 next time.

I just failed my second fresh cycle and I´m devastated!!

Thanks in advance.

Replies sorted oldest to newest

J JillMMember
I'm so sorry you are facing this problem.

I did IVF three times - a fresh cycle, a frozen cycle and a fresh. I conceived all three times first try. I miscarried the second pregnancy early on. Like you I had no identifiable reason for infertility - clear tubes, hubby was fine, hormone levels good. The assumption has been that adhesions blocked egg and sperm from meeting but once we had an embryo, my uterus was able to handle implantation.

I worked at Serono, the company that makes fertility drugs when i was in college and so I learned a lot about it way before I needed to know it. Unfortunately there just isn't an explanation most of the time. Nor is there a way to increase your chances. As much as science can do, this process is still mostly a mystery.

I took no meds during my cycles.

Wish I could be more helpful. I hope you have success soon.
J
S SolarisMember
Those abstracts are useful, thanks.

I´m glad to see we have the same chances as if we hadn´t gone through surgery.

I´m not taking TNF-inhibitors and am not planning to do so throughout pregnancy (when and if I should be so lucky).
Doctors speculate if the TNF-inhibitors could help the implantation of the egg so it would just be for a short period of time - the hypothesis is that us with UC have elevated number of TNF and that decreases the likelihood of implementation of the egg.
Maybe someone in the US had some experiences seeing it seems more common to use it during IVF over there than over here.

Please do move this post if I posted it in the wrong place, thanks - sorry, I´m definitely not a pro at this!! Smiler
S
Jan DollarJan DollarModerator, RN, retired
No problem. I will move it. It is not really in the wrong place, but you might get more "hits" from people searching for the same information in the Women's Health and Pregnancy Forum.

I have never seen any anti-TNF therapy being used specifically to aid in inplantation of the embryo during IVF for UC patients. The only information I have seen is in regard to patients who were on it already to treat UC or Crohn's during pregnancy.

I will post if I come up with any.

Jan Smiler
Jan Dollar
Jan DollarJan DollarModerator, RN, retired
I am not sure I quite understand your doctor's theory, unless there is some sort of data out there that indicates TNF levels in the body actually interfere with implantation. If that were the case, then women with UC would have a lower fertility than the general population, but fertility rates appear to be the same. Now, once you have your proctocolectomy, fertility rates are affected, but that is due to scar tissue in the area of the ovaries and tubes.

Seems like they are grasping at straws, but I can understand them trying to think out of the box, since you are having difficulties.

There is this one article I found that is quite good that indicates what you are saying. But, it seems to be talking mostly about women with active disease, not someone in remission or post colectomy without recurrent IBD. Still, an interesting read.
http://www.google.com/url?sa=t...vm=bv.48175248,d.cGE

Jan Smiler
Jan Dollar
S SolarisMember
That article says exactly what my doctor was saying!! Smiler
The hypothesis is "Women with IBD may have
an elevated ratio of Th1/Th2 cytokines contributing to
difficulties in conception and pregnancy loss" - and "There is no negative impact on fertility reported and there actually is a theoretical benefit with respect to reduction in inflammation leading to higher conception rates."

My doctor says that it might help getting pregnant when you have colitis - because we still do have colitis in some strange way or another after the operations (some says yes to that, some say "absolutely no").

My body reacts with inflammatory symptoms after each egg retrieval - I think it´s due to the Colitis, but I cannot know, of course, and I cannot know if the Anti tnf-drugs could help, but....
S
Jan DollarJan DollarModerator, RN, retired
Yes, it is true that although the colitis is cured by colectomy, you still have the genetics of the disease as an autoimmune disease. Plus, many of us have more than one autoimmune disease, so it is not unbelievable that you have a hyperactive immune system even without the colon. Particularly with your multiple failures, grasping at straws does not seem like a terrible idea. Plus, it is not a complete shot in the dark, since there is some science behind the theory.

The big question would be if you have to pay out of pocket for the treatment, or if you are covered for off label use... Those drugs run about $1600-2500 per dose.

Jan Smiler
Jan Dollar
S SolarisMember
Yes, it´s very expensive!!
So are all the fertility drugs.
But after we have spend about 2000 dollars on meds here we get a huge refund on the rest of the meds we buy the rest of that year - that´s a good rule because fertility drugs are expensive, too!

It is grasping at straws but I prefer doing that than just doing the same over and over again and then expecting a different outcome Smiler
S
ClickyClickyMember
I suggest doing yoga (not hot yoga or anything crazy, but hatha, Iyengar or restorative yoga). I have two adopted kids and was married 11 years and never used any protection. I became pregnant after 11 years and the only thing different, apart from more scar tissue from the jpouch surgery, was a serious yoga practice. Might not help, but shouldn't hurt! There are classes for fertility. Good luck! I now have a happy, healthy 5 month old baby that was meant to be impossible!
Clicky
ClickyClickyMember
No. After one year of trying right after we got married nothing happened so we decided to adopt. I have other health concerns too so did not want to push my luck with IVF (my recent revert to ileostomy surgery 3 weeks ago was my 24th surgery). We adopted a 3 & 5 year old and let go of the the idea of conceiving. It was a complete shock- even my doctors could not believe it!
Clicky
V vstRNMember
Oh Clicky, 24 surgeries???!!!! Wow, that is a lot.

Solaris, I can only imagine how difficult this has been for you. I unfortunately do not know anything about a colitis connection with IVF. However, I'm a RN and work in women's reproductive heath in one of the major hospital centers in NYC. If you have any questions about protocol/drugs/etc. feel free to get in touch with me. Wishing you tons of luck in this journey!
V
ClickyClickyMember
We lived in Europe when we adopted (UK). If you consider adopting, make sure you call a few different agencies - you may have gotten information from someone who did not know. For me, the health thing was an issue. My doctor had to write a report about it then a panel concidered it but in the end it was fine. Just a few more hoops to jump through!
Clicky
C CozIVFMember
Hi girls

I read this and HAD to comment

I have had 5 IVF goes. Two didnt make transfer as one was abandoned as I didn't respond to the meds and one I just did got all The way to egg collection etc but no embryos survived to transfer Frowner

So I had 3 out of 5 that made transfer. I had one missed miscarriage detected at 9 weeks (saw heartbeat at 6w5d) and one chemical and one negative.

I heard about the NK Cells (natural killer cells) and cytokines so I had mine checked and both were elevated. Cytokines more than NK cells. I had two rounds of Humira and something called intrilipids before this last cycle but like I say, I didn't make transfer... We spent £7k nearly! Frowner

I have since read that people with jpouch or similar also have high cytokines. I was also put on steroids and blood thinners as I was also tested for having the MTHFR gene...

Loosing hope! More success storie plllllllsss
C
R rockandrollerMember
We could only afford to do IVF once. We had 3 viable embryos and couldn't afford to do FET so we put all 3 in. One is my son, who is now four.

If it had not worked, and odds were not in my favor that it would (40% success rate), we would have gone on to a happy childless life. We spent 3 years and $15K on fertility and IVF was the last stop before moving on with our lives and finding other ways to be happy and fulfilled.
R

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