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Hi all! I’d love to hear from some j-pouchers who have been pregnant. I have an appointment at a fertility clinic in a few weeks and I want to gather as much info as possible to make a decision whether to pursue pregnancy. Any recommendations for things I should ask?

For context, I’ve had my j-pouch since 2012. I regularly deal with pouchitis and I also have (unconfirmed but suspected) endometriosis. They know there’s a lot of scar tissue in there. I’m 33 and have never been pregnant. I would love to have a bio child but I’m also worried about what it would be like and want to make the best decision for myself, my husband and a possible child. Any advice, resources, or stories of your experience are greatly appreciated. I’m in Ontario, Canada so if you have any provider recommendations I’d love those too. Thank you!!

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Hi there! Just wanted to say that I totally relate-- it's tough to find doctors who are familiar with women of childbearing age (I'm 32) who have j-pouches, and I personally don't know anyone else in real life who's in this position (though I know plenty are on here!) It can often seem like we're having to blaze our own trail, which is stressful. The only thing I can think of would be to ask about all the diagnostic/screening tools available so you can get as good an idea as possible of what your particular anatomy looks like. I'm not sure if you've already been trying naturally or not, but either way it may be helpful to gather that info. For me personally, upon comparing my ultrasound (which noted the location of my ovaries) and HSG (which noted the location of my tubes), it appeared that scar tissue had caused both to re-locate in my abdomen, and it looked unlikely that I would ever be able to naturally get an egg from my ovary to tube in order to conceive. (This was in 2016, and when I had an unrelated surgery last fall to remove an ovary, my surgeon told me that the adhesions around my ovaries were a huge mess and agreed that I wouldn't have been able to get pregnant on my own.)

I was able to pursue IVF shortly after the initial testing, which, thankfully, has been a smooth process for us. We've had two children already and are pregnant with a third! My pregnancies and deliveries have also, thankfully, been uncomplicated and I haven't experienced any issues with my pouch. Happy to chat more if you have any other questions while you navigate this process. Good luck!

@susbo posted:

Hi there! Just wanted to say that I totally relate-- it's tough to find doctors who are familiar with women of childbearing age (I'm 32) who have j-pouches, and I personally don't know anyone else in real life who's in this position (though I know plenty are on here!) It can often seem like we're having to blaze our own trail, which is stressful. The only thing I can think of would be to ask about all the diagnostic/screening tools available so you can get as good an idea as possible of what your particular anatomy looks like. I'm not sure if you've already been trying naturally or not, but either way it may be helpful to gather that info. For me personally, upon comparing my ultrasound (which noted the location of my ovaries) and HSG (which noted the location of my tubes), it appeared that scar tissue had caused both to re-locate in my abdomen, and it looked unlikely that I would ever be able to naturally get an egg from my ovary to tube in order to conceive. (This was in 2016, and when I had an unrelated surgery last fall to remove an ovary, my surgeon told me that the adhesions around my ovaries were a huge mess and agreed that I wouldn't have been able to get pregnant on my own.)

I was able to pursue IVF shortly after the initial testing, which, thankfully, has been a smooth process for us. We've had two children already and are pregnant with a third! My pregnancies and deliveries have also, thankfully, been uncomplicated and I haven't experienced any issues with my pouch. Happy to chat more if you have any other questions while you navigate this process. Good luck!

You are so lucky

@susbo posted:

Hi there! Just wanted to say that I totally relate-- it's tough to find doctors who are...

Thanks so much for your response @susbo! I have had some ultrasounds/HSG where they've determined one of my ovaries is trapped by scar tissue and one of my tubes is partially blocked. But so far no one will say what kind of effect that will have on fertility, beyond a generic "it might cause problems, it might not". That is helpful to know that I should question about location and placement and how that might affect things.

It's encouraging to hear your story of successful pregnancies with no j-pouch complications so thank you so much for sharing that. I'm sure I'll be back with more questions at some point

Hey there! I am slightly different because I did have two children prior to my j-pouch. I did see a fertility specialist, did a few months of clomid and then got pregnant after giving that up. In regards to complications, any pouch issues I had totally disappeared during pregnancy and I was able to eat my fill of dairy (a no go for me since the pouch). I know that is probably not everyone’s experience but over all my pouch pregnancy was not much different than my pregnancies pre-pouch.

I had one baby prior to my j-pouch and then got pregnant about 6 months after my j-pouch surgery.  I also have chronic pouchitis.  I was on a low dose of Augmentin my entire pregnancy and for 6 months of nursing.  After 15 months on the Augmentin, it stopped working so I needed to get on other antibiotics.  My docs didn't want me on any other antibiotics while nursing so I decided to stop nursing at that point and switched back to other antibiotics.  My pregnancy was uneventful other than horrible morning sickness.  I had a normal vaginal delivery since I had a very easy delivery before that and I have small babies (if it's your first baby, you may want to consider a c-section to reduce risk of tearing depending on baby size).  My son is almost 10 now... Everyone doing great!

I had a very good pregnancy and my digestion was bullet proof during the pregnancy. I was eating popcorn daily in my third trimester because my office building had a machine in the lobby making it (haha). So, I miss being pregnant. I had a planned c-section with no issues other than the doc cleaned up my scar from my original surgeries and made it better looking. Don't be too worried unless you have other health issues - the j-pouch shouldn't prevent a healthy pregnancy and birth.

I'm in Calgary so my family doc referred me to an obgyn with experience with j-pouches. Honestly, there were no issues and my body took over and did what it needed to build a big, healthy baby girl who is now 15 and learning to drive, which is WAY harder on me than pregnancy ever was.

Last edited by 1993SPouch

Aww good for you for taking that step! It can be fun but stressful and everything rolled into one. I’d suggest looking at previous advice on the pregnancy board on the j pouch forum here- I know we’re had some good discussions and advice here.

I got pregnant at 38, about 5 months after my takedown surgery and after a tumultuous 3 years of ulcerative colitis and being on and off prednisone and other drugs. My husband and I had actually prepared for some difficulty getting pregnant bc of all the health issues colitis and the pouch might being, but that didn’t happen. I had no probs at all with the pregnancy and my doc planned the c section. The surgery was cake compared to the j pouch surgery, plus you have this great bundle of joy. we had a colorectal surgeon on call in case they hit some issues with scar tissue, bleeding, etc, but nothing happened at all. Easy peasy.

Best of luck to you!

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