Hello everyone,

I just need a place to vent. I have suffered with ulcerative colitis between the ages of 13 to 18, the disease never going into remission for more than 6 months. I have had my j pouch for 11 years, one bout of pouchitis, and I have honestly forgotten I have had a disease or the trauma of going through surgery until now. 

My husband and I have been trying to conceive for the past year, without any success. Me not even realising that my surgery in the past could be the underlying problem. We have been to the fertility specialist who recommended ivf as the best route for us to try. Has anyone tried iui and have had a successful outcome?

Another hurdle, I herniated and now have an incisional hernia that needs to be repaired, healed before I can even start my journey of having a little baby.

I probably sound like I am throwing a pity party, but does it get any easier. Not once have I thought I might have fertility problems. I thought the biggest hurdle has been crossed. 

Thank you

 

 

 

 

 

 

 

Original Post

Not a pity party, just pure need to vent, cry, scream, yell and rage at the clouds.

Vent away...this is a tough journey and not one for the faint of heart...just remember, you are not trying to have a baby (that is just the start of it) but a child and that is a long term commitment...meaning, you need to be as healthy as possible before embarking on it...get the hernia fixed, get yourself in shape and then try to allow nature to take its course for a bit before putting your body and mind through all of the stress of IVF...this is supposed to be fun, joyous and full of gladness and not frustration and sadness.

Most of all, make this a time of joy with your husband, not stress...you have been through enough of that already.

Sharon

I had my j-pouch for 3 1/2 years before going to a perm ileo.  Had the pouch removed 18 months later.  At age 34, we pursued IVF.  In MA treatment is covered by insurance, but you must do 6 rounds of IUI first.  Due to my situation and the fact that the IVF drs did not believe IUI would work for me and they did not want me to carry more than 2 (and avoiding high order multiples is much harder with IUI) we got approval to skip 4 of those cycles.

First IVF cycle we transferred 2 3 day 8 cell embryos.  We believe I was pregnant with twins initially, but at 8 weeks only one survived - now my 10 year old son.  We had 3 frozen embryos and did a frozen transfer about 20 months later.  I did get pregnant but it was shaky from the start.  I miscarried at 8 weeks.  Second fresh cycle I had OHSS and because of the miscarriage we decided to do a 5 day blast transfer - just one.  The OHSS was still not great on day 5 so we waited an extra day.  So we transferred a 6 day hatching embryo - now my 8 year old daughter.

For me, it appears that egg meeting sperm was the issue, and once that was addressed, the embryos implanted with no problem and I was able to carry full term (with the one miscarriage in between).

Hi ZC ,

you are not alone ! I am 29 and have had my pouch since I was 17. After several months of trying to conceive with my husband  I had a suspicion something wasn't right and when I was worked up my obgyn found a large hydrosalpinx and I needed surgery. I was devastated for many reasons I needed my right Fallopian tube removed due to adhesions forming from my previous surgeries and causing severe dialation leaving it non functional. Knowing once it's out I would only have 1 good side to conceive and they found my good tubd also suffers from adhesions causing damage and dialation but still has a slight opening so they left it. I underwent fertility treatments after the surgery and they went staight to IUI even though the chances were low and after several failed cycles we turned to ivf. Going through fertility is draining emotional and downright depressing. I'm happy to report after our fresh transfer of a 5 day blastocyst I'm now 16 weeks pregnant. Currently I have found out several people in my life who just got pregnant at the drop of a hat and it definitely stings. But I'm happily pregnant and have 2 frozen blastocysts for future use and hopefully my pregnancy continues without any complications.  

Good luck and remember you are not alone 

YogiJano thanks for your inspirational story. I just had the hernia repaired this week so I'm down for a more weeks before we can try iui. I am just happy to hear a successful story. A huge congratulations on your pregnancy I definitely know the emotions that goes through trying to conceive and everyone around you taking falling pregnant for granted. 

Our struggles so far in life can only make us stronger. 

Thank you for sharing your story.

I was diagnosed with UC at age 12, had multiple surgeries in my teens and 20's--including j-pouch construction and take down, bowel strangulation from adhesions, etc.  I married at age 28, wanting children, unsure of my ability to conceive or carry a pregnancy to term.

We've not been "trying," but have taken no preventative measures against pregnancy. After 15 months of this approach, we found out we were pregnant. I miscarried at 7 weeks. Though we were heart-broken, we're grateful to discover that conception was possible and that no complications from my surgeries seemed to be a factor.

It's been a year since the miscarriage. Some other health issues were identified, with my iron levels (ferretin) being very low and my platelets being slightly elevated.  Right now my focus has shifted toward getting my body back to better health so that hosting another human life might be possible!

We want to have children and see them as a blessing; we've also witnessed the marriages of friends and family suffer catastrophically from the pressure of "unsuccessful" trying.  On a positive note, we've witnessed many unexpected pregnancies of others who'd stopped trying after years of invasive fertility treatments. We know there's no guarantee that we'll be able to have a child or children, but seeing the "impossible" gives us hope that God appoints every life!

Hey I am in a similar situation and maybe can help shed some light to your infertility issues I actually had UC ages 13-20 and had my Jpouch done in 2006. So here I am 10 years later and my hubby and I've been trying for the past 12 months as well with no luck. We've been to fertility docs and I have a wonderful ObGyn. She is now suggesting that I have a laporoscopy prior to spending $20,000 on IVF to see how things look. My tubes are patent per the HSG, but the Ob feels like the ovaries may be spun in scar tissue. My GI also reminded me of the high risk of infertility because of our surgery but that a newish study found that pregnancy rates among women with JPouch and pregnancy rates in the general population are essentially the same with IVF. I'll probably go forward with the lap simply bc it's the last step before IVF without costing me thousands. Good luck to you... and please know you're not alone in this struggle. It's a sad thing at times I know ❤️  All you can do is keep on keeping on, which any girl with our history is an expert at doing! 

We had a similar journey. Around age 32 we started trying but no luck. After a year, got in with fertility dr and did one round of IVF which didn't work--no one was sure why. He wasnsure IVF would be "easy" as it was just scar tissue causing road blocks-or so he guessed. I didn't want anymore IVF cycles because I hated the idea of more poking, prodding and hormones, so we opted for adoption (have been waiting for 3 years--it feels like forever!). Anyway, I learned just last year that i have endometriosis and the j pouch surgery had nothing to do with it, so it is probably a good idea to get checked before you go down the emtional and financial hole of fertility treatments. Best of luck on your journey--I don't think people who easily started a family have any clue what it's like for those of us who can't!!!

Just want to chime in with another J-poucher here with infertility but a happy ending!

I got my j-pouch when I was 15 in 1997, there were no statistics on the surgery and infertility at the time... I got married at 28 and started trying the next year, then happened upon some research that showed it was very likely I would have issues getting pregnant.  Had an HSG which showed 1 tube blocked, 1 partially blocked and my OB said if I tried for 6 more months with nothing, that I should go straight to IVF, IUI would have no help because my issued were because of the scar tissue.

When I consulted for IVF, they actually recommended I get essure placement (essentially getting my tubes tied) because a blocked tube with hydrosapalinx is actually toxic to embryo implantation...  I got that done and started IVF, thinking and having the doctors telling me it should work right away because my issues were "physical"  well... In all I did a total of 8! IVF transfers 3 fresh with 5 frozen in between and had 4 chemical pregnancies, 1 miscarriage at 7 weeks, and pretty much gave up on everything and felt like I had been through the ringer, when low and behold our last Fresh IVF try, I got pregnant and it stuck!   My son is now 14 months old and the light of our life!

New studies are coming out that autoimmune diseases can increase your body's natural killer cells and basically interfere with implantation so I actually needed all kinds of additional interventions to help make the IVF "stick" Intralipids are actually given to help calm your immune system down, I was on steriods thoughout IVF to help with immunosuppression, and with my last successful cycle, I actually took shots of HCG (pregnancy hormone) to help my body think it was already pregnant and do what it was supposed to.

Good luck to you and I hope and pray your journey to motherhood is easier than mine was, but just know even if it seems difficult or even hopeless, try to make yourself stick it out because it is so worth it in the end!

Beth156 thank you for your post. I don’t feel so alone anymore. I was diagnosed with UC when I was 18 and had all three major surgeries when I was 21 years old resulting in a jpouch. Now 7 years later my husband and I are trying to conceive and having a hard time. Ive done the egg retrieval and two frozen embryo transfers. The first one implanted but it was a chemical pregnancy and the second one likely implanted but we aren’t sure. My doctor ordered Recurring  Pregnancy Lost Panel and a Hystoscopy to check the lining and do a scratch. Has anyone had hope with that? I am going to ask he look into the natural killer cells and the lipids. Should I be consulting a different doctor other than the Infertility one? Perhaps a GI one?

I’m so scared and nervous that this next transfer won’t work. It’s such a devastating blow each time. After reading your post I feel like I have some hope again. 

I’m so glad to find this group. 

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