Infertility with J pouch?

Hi and welcome,

I am a k pouch olddie here so my experience goes a long way back...

I was born sick and had my first ostomy at age 2. No one worried about fertility on a baby girl back then. 

By my teen years they were operating me like crazy and doing so many x-rays and tests that I started to have concerns about fertility myself.

I saw a gyn who warned me that my condition could lead to infertility, congenital deformities and spontaneous miscarriage.

She was right.

After marriage and 1 yr of trying normally they did a HSG test (horrors) and found that my uterus was fold in half with a rudimentary horn (meaning that half atrophied) they couldn't find the left tube and the right one was blocked. They couldn't tell me at the time if it was birth defect or a result of all the surgery. My fertility was totally compromised.

I did both the adoption route and tried for IVF (it was brand new back then and I was a horrible candidate so they refused).

My marriage didn't survive the stress and I left.

That was 35 yrs ago.

I am remarried and a step mom and grand mom...you find your kids when, where and how you can. 

Maternity does not start or finish with a pregnancy but extends to any and all kids that you can get (personal opinion).

Things have vastly improved since my time, IVF is so much more perfected, techniques are better but there is one hard and fast rule.

You need to allow mother nature to take her course too, not stress, not rush and not despair...and you need to have fun with your hubby.

Do not let the desire for a child make you forget to love and laugh and enjoy each other. Do not forget that maternity comes in so many shapes and forms. They may not be what is expected but they are all great.

Barring any real physical blockages (often due to repeat surgeries and inflammation) you may just need to relax and give it time. Or not.

I have 3 very close friends who all went the IVF route and suffered greatly both emotionally and financially only to give up...and then find themselves pregnant naturally once they stopped trying and started living again.

My hopes that you will end up enjoying life and have a beautiful baby naturally.

Sharon

I am in the middle of my fertility journey, I've had all the testing and I'm waiting to start IVF. If we're not successful then we will bring children into our life through adoption. 

I have conceived naturally, two years ago and it ended in a miscarriage but a scan through the board will show you a wealth of different stories. If you have any questions at all about the testing or the process please ask away.

Sharon is 100% right, infertility is not for the faint of heart and I've had to work hard on fostering my relationships, my passions and self care. IVF is not a guarantee for a baby and whatever happens we will be okay. 

I had my J pouch surgery 25 years ago and was able to successfully conceive our son who is now 21.  We tried for 4 more years including IVF to have another child and it did not happen so we adopted a beautiful 1 day old little girl who is now turning 15 and feels as if she is our biological child.  I actually forget at times that she isn't!!!  Either way you want to go, you can be a mother to children but I agree with the above statements that it is extremely stressful and would recommend talking to a counselor to help with the stress~

I had my j pouch around the same time- in 2003.  We tried to conceive for about 3 years before we became pregnant in 2013.

Around 2010, we went off birth control and didn't try but didn't protect for a year, then we actively tried (charting cycles, etc.) for another year or so, then we decided it was time to see a reproductive endocrinologist (fertility specialist).  We did the standard work up- semen analysis, blood tests for hormone levels, postcoital test (PCT), HSG test.  I had read on these boards that damage to fallopian tubes was a common reason for IF in post j poachers, and so the HSG test was my greatest concern. One of my tubes was inconclusive, but the other looked clear - but we failed the PCT big time.  

For us, that meant the best course of action was IUI (our main problem was at the cervix and IUI bypasses that).  We did two cycles with no fertility medication, got pregnant, but miscarried.  Then we did 3 more natural (no medication) cycles of IUI, and decided to up the treatment to IUI with clomid for the 6th cycle. In that cycle, we fell pregnant with twins!  

The pregnancy went great, only complication was a bowel obstruction around 26 weeks, and I carried them to term for a c section at 38.5 weeks. I nursed the twins for about 14 months, and just 9 months after weaning (when they were 23 months old) I found out I was pregnant again!  Definately wasn't trying this time, but we're due in September with baby #3.  

One's body changes dramatically in pregnancy and apparently whatever was going on with my cervical fluid and/or hormones and/or ovaries was altered during those dramatic changes (or, it could just be a lucky fluke, too). 

A few of my take aways-  One of the many things I found frustrating in our infertility journey was how inexact the science was relating to testing a women's fertility.  There are a few tests that can be performed, but dozens of functions that must work perfectly for conception to happen. It's difficult to choose the right fertility treatment without knowing exactly where the fertility "breakdown" is occurring. 

In infertility, you're dealing with grief and grieving the loss of opportunity of your child each month.  It can be hard on you and can be hard on a marriage. It was a journey we were traveling together, and so my husband and I went to regular counseling together.  It helped a lot.  

Infertility is hard.  Emotionally, it was the hardest thing I ever dealt with (and as you all know, acute UC ending in j pouch is no picnic).  I do hope it ends quickly and positively with a healthy pregnancy for you!

thank you so much ladies. i think i was expecting people to reply saying there would be no problem with infertility but it seems there is across the board... we will keep trying but I have a gynaecologist appointment on August 8th and we will see what happens from there. 

Fingers crossed as neither of us want IVF. KDUB what does IUI involve? so happy for you you have 3 lovely babies!

We had tried to get pregnant for over a year and wish I had gone to see my Dr. Sooner when things weren't working. She said she would have sent me after 6 months given the risks for us pouchies. My gastro had warned me about fertility issues so none of it was a surprise, and oddly didnt't have the grieving many women experience with infertility. We did 1 round of IVF and honestly I would never, ever, do it again but everyone's experience is different. The hormones just make you so crazy and feel terrible, not to mention the interpersonal and financial strains. We never did get a clear answer on why it didn't work (didn't get pregnant with 2 viable fertilized eggs that were implanted). 6 months later, I started having nothing but problems gynocologically that I am still dealing with. It turned out I have severe endometriosis and the infertility had nothing to do with the pouch! Anyway, we are on a waiting list for adoption and couldn't be happier with the decision. I was done with doctors poking and prodding my body if it didn't need to be, and personally (everyone is different) see adoption as a beautiful way to start a family rather than a last resort. Best of luck on your journey--we've all been through enough so hopefully it isn't another roller coaster ride for you. 

Hi there! Just thought I would share some of my infertility journey. My husband and I had been actively trying to conceive for about a year when I had an HSG test that confirmed that I had blocked Fallopian tubes with hydrosalpinx. For me it was devastating news to hear. Maybe I was naive but I just didn't think I would have issues conceiving. I also wasn't aware that us j-pouchers might have more difficulty conceiving and can have issues with damaged or blocked tubes. I wish I had found this site sooner in my journey. I was in my early 20s when I had the j-pouch surgery and babies weren't even on my mind. Now in my 30s and it's all I can think about! It took a few months for me to come to terms with it and seek fertility treatment. We just finished a round of IVF and have 2 frozen embryos waiting for us to transfer. Maybe I'm just weird but I actually felt great with the added hormones! I felt like I had more energy and I felt more "lush" so to speak! I guess everyone reacts differently to the hormones. I didn't find the shots too bad. Anyway, tomorrow I go in for the Essure procedure. I'm a little nervous but I know it's the next step needed in this journey. I'm trying to keep positive and keep focused on my future baby! It will all be worth it when I'm holding my baby. Anyway, good luck to you! 

oh wow!!! the best of luck to you. i will light a candle for you this morning. fingers and toes crossed! I go in for the test next week to see if my tubes are blocked... im hoping not but we have been trying for about 6 months and nothing... dont know if we can afford IVF ! xx

Hi Momaioneil, How did your HSG test go? Did you get good news about your tubes? 

Hi @Sweetie1234 no not yet  .... this month ...im putting it off....

Hi, I am in the same boat as you momaioniel. I was so sick when i had my surgeries at 20 that i didn’t care one bit about babies. I just wanted to be better. Now at 34, i'm worried it will never happen. Reading some of these stories doesn't actually give me hope for the future.

My question is, are there ways to clear fallopian tubes that are blocked by scar tissue?  Do blocked tubes automatically mean IVF?  

Best of luck momaioniel, i hope everything works out!

Hi Beth,

Please don't lose hope! I feel you're one step ahead of things by reading these posts and knowing what the issues might be, so you can mentally prepare. I had no idea this was a common thing for us j-pouchers and found this site after I was diagnosed with blocked tubes with hydrosalpinx.

I had read some stuff online about unblocking the tubes, but for me it wasn't an option since I had dual hydrosalpinx which means fluid was built up and could be toxic to the growing embryo. The reason IVF is necessary is when both tubes are blocked the sperm can't meet the egg, which causes difficulty conceiving. If both tubes are not blocked and you don't have hydrosalpinx, you might not need to deal with your tubes. There are some success stories about jpouchers who had no issues with conceiving.

Prior to finding out my tubes are blocked, I would have never thought we would be going through IVF. It's very expensive but somehow we've found a way. It's amazing how things started to fall in place and work out. I'm so thankful that there is IVF as an option, as we are one step closer to having our baby! I know it can be overwhelming at first, but somehow it will all work itself out and your options will become clear.

 Good luck to you! 

Hi everyone I don't think this posted yesterday!! Is there a fb group where we could all chat ?? 

Hi @Sweetie1234 would u mind if we pm?? I've just had Surgery and had both tubes removed and hydrosalpinx... we are researching ivf now but have to wait a few months to start the process! How are u getting on?? X

Hi everyone,

I'm so glad to have found this board. I'm about 4 months in to this fertility journey. I knew I had problems because I have PCOS, so I went to see a RE as soon as my husband and I were ready to start trying to conceive. We tried 3 cycles of timed intercourse, and they all failed. I was able to grow eggs and ovulate on letrozole, so that was good. But we decided to go have more testing and it turns out my right fallopian tube is blocked and dilated, and needs to come out. I'm getting a few opinions from various REs and surgeons on what to do next. When I had my surgeries at 16 I didn't think about my fertility. I'm 26 now so I have plenty of time to keep trying, but I know I'm in for a long and expensive process. If anyone wants to chat about this further, please PM me. I'd be happy to lend my support to others dealing with this!

@JackieNY422 lovely to hear from u! I just had both of my tubes removed and am toying with whether or not to attempt ivf.. we are also looking at surrogacy as an option! 

Hello everyone. 

My story is still quite fresh. I have just finished my first ivf cycle and it was a failure. I am completely devastated. 

I've had my j pouch for 10 years, been trying to conceive for 2 years and finally landed up with ivf. I thought I would end up with a pregnancy seeing as I just possibly had scar tissue.

After poking and prodding myself for 2 weeks with ivf meds I only ended up with 1 egg!! The egg fertilised and we transferred a 3 day 12 cell embryo.

This road just seems so hard sometimes. Best of luck to everyone trying to conceive, be strong.

Hi all,

So sorry to hear about all your troubles! I am trying to add some positivity to your lives! I had my J pouch formed in 1992 and was able to get pregnant in 2001 without trying. We wanted another baby, and I was able to get pregnant again in 2005 within less than 6 months of trying so J pouch surgery definitely doesn't equal failure. My second pregnancy ended with my son being stillborn due to a cord accident (nothing related to the J pouch either!) and we ended up adopting a boy from South Korea in 2008. I just want to tell you all not to give up! Even when things seem really dim, it doesn't mean it is the end. My daughter is currently a cranky 14 year old teenager and my son is the sweetest 9 year old one could ever ask for! Hang in there and sending lots of hugs!

I'm right there with you. I've been trying to conceive for over 10 years. I've went rounds with my docs. They absolutely do not want me to try anymore. 6 months ago I had my last surgery and they told me my uterus and my jpouch are actually fused together with adhesions and there afraid that if I do get pregnant or they try to separate them, my pouch will tear and they won't be able to repair it. This was devastating, because all I've ever wanted was to have a family of my own. So I completely understand. But it isn't the case for everyone. I've read some amazing success stories on here. 

@Sonja6 so sorry to hear that. That's what I'm afraid of to be honest. Really worried as my gynae put in my referral letter he absolutely recommends no further surgery for me. He couldn't find my ovaries when he opened me as they are embedded in scar tissue. I'm devastated as I feel this may mean no off and none of my own eggs as they won't be able to collect them. Looking in to surrogacy currently xx

@Momaioneil i understand your fear entirely. I had a similar experience this summer. I had to laproscopies to try to remove a fallopian tube, but both times the tube was too embedded in adhesions. In the next two weeks I'm visiting my original colo rectal surgeon to get his take on everything, and a maternal fetal Medicine specialist to see if it would even be safe to carry. And if I get go ahead from them, we'll start ivf. But the surgeon had concerns that my uterus was surrounded by bowel so who knows.

@JackieNY422 I had both tubes removed one was embedded in bowel so they just snipped it  they couldn't see my ovaries so I would imagine they won't be able to get to them at all for egg retrieval as it would be too risky I would imagine... seeing a fertility specialist next week on the 10th August so will know my fate then.. to be honest; if I'm that much of a mess inside; I'm not holding out much hope for a pregnancy and really don't want to risk the pouch and end up with a perm ileostomy..  do u know what I mean? X

@Momaioneil I'll be hoping for you! I feel you 100 percent. We worked so hard to be healthy with these j pouches, so it sucks to risk it.

They couldn't even snip my tube because it was so deeply embedded. I don't think that bodes well for me, but I'm waiting to be devastated until I visit all my doctors and get all the info.

Did they say anything about your ovaries??

hi ladies,

I posted a while back and I can remember the pain of learning that my ovaries were entrapped in scar tissue from all my surgeries for my pouch like it was yesterday, but it was 17 years ago.  I did 3 IVF attempts and ended up with an ectopic pregnancy and infection that led my doctors to tell me that I needed to leave my body alone.  It was devastating to both my husband and myself, but eventually we reached the decision to adopt and our beautiful daughter will be turning 16 in October.  We brought her home from the hospital at 2 days old and can't imagine life without her.  It is a journey to get the point of adoption but I am just here to share what an incredible blessing she has been in our lives.  We have a biological son who is 22 yo and we love them both and forget we adopted her sometimes....

@Shellie so they were able to get to your eggs even though they were in scar tissue??

Thank you to all you lovely ladies putting your stories on this page. I have found on my infertility journey my friends or colleagues dont really want to discuss this topic as if it's contagious. I am so grateful to have a support system on this page. I have googled so many different things hoping to find out everything I possibly can. The information is so limited though.

After my failed ivf with 1 fertilized egg they done an amh test and found that I have less eggs than I actually should for my age, I am scared out of my mind for my second round of ivf. Honestly speaking when my fertility doctor told me he was glad he could find my eggs I had no idea what he was referring to until I read this thread.

Goodluck to everyone trying. No one can get up and find strength the way we know how to. 

Love 

Zc

Yes...they were able to get my eggs with IVF and they fertilized fine.  when they put the embryo back in my uterus there is only a 4% chance of it somehow becoming ectopic in your tube, and I guess I was one of the 4%......I had to take Methotrexate and then developed a strange infection which is when we had to stop IVF and move onto adoption.

I did conceive with my son naturally, using Clomid, so it can happen....It was the single most stressful 4 years of my life going through Infertility though...worse then my UC...I feel for you and send you positive energy!!!