So a very quick recap of my very long journey is that when I was 16 in 2011 I had my first set of 3 surgeries to remove my colon and have the temporary ileostomy because my UC was not being managed and it was really bad I was not even diagnosed for a full year before I was having surgery. After that I had complications that I was told from my first doctor were “normal” and would vanish after some time. Well by 2020 I was having another set of surgeries because my complications from the first set of surgeries caused my jpouch to prolapse. I am now a year out from surgery and I’m currently experiencing no complications! (Knock on wood lol) anyway in that time I married my boyfriend who was SO supportive during this time for me. So, we have been trying to get pregnant for over 6 months now and I’m not having any luck. I was told that it would be difficult because of scar tissue that would likely form and it could prevent my eggs from making the journey from the ovary to the Fallopian tube. My periods are pretty normal and I’ve lost weight (50+ lbs) So I’m not sure what exactly is going on but I was just curious how ttc worked out for anyone else who has a jpouch.
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Unfortunately after J-pouch surgery, our infertility rate drops to 50%. I would give things another 6 months and if that does not work, I would look into IVF if I were you. Quite a few J-pouchers had to do IVF to get pregnant. If IVF is too expensive for you, I would look into adopting, that is what I plan on doing in the future.
Hey there! I also had my surgeries as a teenager and struggled to get pregnant later as an adult. My fertility specialist was able to do a few tests (ultrasound and HSG), which showed that my ovaries and tubes were not where they're "supposed" to be (likely to pulled away by adhesions/scar tissue). We jumped right to IVF from there and it went pretty smoothly- currently pregnant with #3! (I had an unrelated surgery later on, and my surgeon confirmed that my ovaries are a mess of scar tissue and didn't think I ever would've been able to get pregnant naturally.)
It could be worth looking into at this point to see if there's any info that could be easily gained about your anatomy. Plenty of people with j-pouches do get pregnant on their own though, so it could just be a matter of time too. I guess it depends on your timeline/how long you're willing to wait.
Thanks Susbo! I have had ultrasound testing and everything seems to be located where it needs to be. I believe the next thing I’m scheduled for is the HSG and my doctor said if it looks to be scar tissue we could possibly try to remove it. If that doesn’t help then IVF was brought up but the cost definitely is scary to think about but something I would be willing to look more into.
@bbmh posted:Thanks Susbo! I have had ultrasound testing and everything seems to be located where it needs to be. I believe the next thing I’m scheduled for is the HSG and my doctor said if it looks to be scar tissue we could possibly try to remove it. If that doesn’t help then IVF was brought up but the cost definitely is scary to think about but something I would be willing to look more into.
Yeah, IVF is crazy expensive, adopting is always a good alternative, I would recommend adopting from foster care, that is free I believe. Hope you conceive soon but if not,there are options 
Good luck
I had a 3 stage J Pouch 30 years ago and was able to conceive my son with the help of a reproductive endocrinologist and some Clomid and he will be 26 years old next month. We then tried and tried again and did IVF and had an ectopic pregnancy so moved onto to Adoption and our daughter will be 20 years old. Fertility was more emotionally challenging for me than my Ulcerative Colitis so I would suggest seeing a specialist so you don't waste time...
Wish you the best !!!
Total Colectomy and J- Pouch 1990
Yes, fertility issues are def. a side effect of the surgeries. We did IVF, but went completely without birth control for about 18 years before we did that, soooooo, yeah. It wasn't gonna happen. Our daughter is almost 4, but we had to wait later than we would have liked because of the cost, so I get it. Good luck!
Did you have open or laparoscopic surgeries? I had laparoscopic surgeries in 2019 and got pregnant naturally in 2020. I had been really worried after my surgeries and had asked my surgeon about fertility (citing the 50% reduction in fertility that I'd read about online) and he said that fertility is less affected by the laparoscopic procedures (that 50% number is from studies where the women had had open surgery.)
I wasn't sure if I believed him initially, but we did get pregnant naturally, so I am assuming there is truth in what he says. I am not saying that open surgery means fertility will be impacted, and I am not saying that lap surgery means fertility won't be affected...I think there's a huge lack of research and documentation on all of these things unfortunately. Just stating my experience.
Also, I think--no matter what your age--that the surgery shortens the amount of "trying" time needed before you can get referred to a specialist. For most women, you have to try a year before you can see a fertility specialist (in the US) but the pouch surgery allows you to shorten the time to 6 months, so you could talk to your OBGYN or primary doc about getting a referral for that.
Good luck!
Have you ever looked into embryo adoption? (aka snow flake babies) That might be an option for you. Best of luck!
@elliepouch posted:Yes, fertility issues are def. a side effect of the surgeries. We did IVF, but went completely without birth control for about 18 years before we did that, soooooo, yeah. It wasn't gonna happen. Our daughter is almost 4, but we had to wait later than we would have liked because of the cost, so I get it. Good luck!
Did you have your J-pouch before you stopped birth control???
I wasn't sexually active until after I had my j-pouch, as I was a young adolescent when I got sick. When I had my surgeries they told me I would have no issues getting pregnant, not sure why they said that, anyway, I also got married pretty young (23) and I thought it might take a while even though my MD's said it shouldn't be a problem. Once I hit 35 we started to look at options to help since it was obvious that there was an issue. I had an HSG and the issues were clearly not going to be naturally overcome
So sorry that you have had issues. I was blessed to be able to have my daughter BEFORE my diagnosis or surgeries. My surgeon told me to wait a year before trying again. But, during that year, the scar tissue built up, and I was never able to have any more children. It definitely stinks!
@elliepouch posted:I wasn't sexually active until after I had my j-pouch, as I was a young adolescent when I got sick. When I had my surgeries they told me I would have no issues getting pregnant, not sure why they said that, anyway, I also got married pretty young (23) and I thought it might take a while even though my MD's said it shouldn't be a problem. Once I hit 35 we started to look at options to help since it was obvious that there was an issue. I had an HSG and the issues were clearly not going to be naturally overcome
Yeah I am just happy you were able to have kids