Sorry that no one has replied to your post, but I don't really have any advice to offer as I haven't had any of these issues. There are lots of women on here that have done IVF though so hopefully they can at least answer that question for you!

Thanks. Hopefully someone will respond but it's not looking too good.

Hi Ashlea,

I haven't checked this board in ages, saw your post, I've not heard of a pouch being attached to a tailbone. My best advice is to listen to your doctors, if they give you the all clear to get pregnant then it must be safe. The uterus grows up and outward, towards the front of the belly away from the tailbone, so I can't imagine it would cause too much of a problem.


1. Has anyone been pregnant with their Pouch attached to their tailbone? If so, did you experience a lot of problems from this and what kind?


2. I am also worried about my scars because I have been cut open along the same scar several times and I am worried about how this will feel. Did anyone experience unbearable pain?

I've also got a roadmap on my tummy, when the scars stretch they get itchy. As the baby grows depending where they press on the scar tissue it friggin hurts. But you can lay on the opposite side and just wait until they move and you're ok again. As they grow and change position you feel different things. I've had 2 separate days of notable pain, I think it was an adhesion maybe a tear, but I'm ok now, I'm 23 weeks with my first.

3. I am on Remicade for a fistula I once had back in 2009. I am mainly still getting infusions bc it makes me feel almost like I did pre-pouch and stomach issues. Awesome. Did anyone get pregnant and stay on Remicade or did you stop it while pregnant?

I have chronic cuffitis, my doctor has suggested if it worsens we can use Remicade as it is not known to cause birth defects or other complications. It's one of those benefits outweigh the risk situations. It hasn't been around long enough for them to conclusively say it's completely safe.

4. How was the IVF experience? Did you experience a lot of pain or just discomfort?

This I know nothing about. But I wish you the very best results from your treatment!

I am going to start IVF in about a month, but I've never been pregnant. I have many of the same questions as you.

Keep me posted about your experience please. I am proceeding with IVF in July! I am excited and nervous at the same time. If you get any of the answers please let me know. Good Luck!!

Hi,
I'm 12 weeks pregnant and I have had my j-pouch for a year. I have done IVF twice, pre-pouch and with pouch and I'm sorry to tell you it was worse with the pouch, but the pain is durable and just remember to ask for good meds. We had hit the jackpot first time both times :-) So there is hope!

I was on Remicade pre-pouch because of my colitis and the doctors said it would be ok to get pregnant and I also found some studies to support it. In my first pregnancy I had a long list of medication and it went in the end really well.

Hope this helps at least little. Good luck!

I know I'm a little late on this but I can answer a few of your questions based on my experience.

1. I was pregnant with my pouch attached to my tailbone and had no issues.

2. My c-section incision was the same incision that was used during 2 previous surgeries - no unbearable pain. In fact, I thought the recovery was incredibly easy!!

3. I can't answer for Remicade but I was on Humira for arthritis and my OB and reumatologist recommended I stay on it during my pregnancy so I did. I saw a high risk OB and she did some research for me. Although there is very little research about this, she concluded from what she saw that it would be better for me to stay on it than to get off it. I recommend you consult with a high risk OB about your Remicade if you haven't already, along with your colorectal surgeon and see what they think.

I can't comment on #4 because I didn't do IVF. Good luck! I hope everything works out for you!

I go for a consultation with a High Risk OB Doctor on the 22nd to discuss the Remicade.

Next week is prescreening labs and ultrasounds to prepare for our July IVF cycle!! So excited!

Daisy: Thanks for the response about your pouch being attached to your tailbone. Not many people that I have talked to have heard of it being attached there. Was yours originally attached to your tailbone or did you have complications and then it was attached there?

Ashlea, my pouch twisted because I didn't grow scar tissue to hold it in place so I had surgery to tack it down with temporary mesh. That was about four years ago. Then just recently it started happening again so I had to have surgery again to permanently tack it down. What about you?

In 2003 my pouch fell and was literally coming out of me. Extrememly painful. No one knew what to do. My original surgeon decided to create scar tissue at my tailbone to attach my pouch to. Apparently all of my scar tissue was gone which is why my pouch fell. Kinda strange because about a year earlier I had to have emergency surgery to remove scar tissue that had built up.

Hi. I'm pregnant! 16 weeks and doing great. Im on remicade and did a lot of research before trying to conceive. Im now seeing three different doctors and all three agreed to continue with the treatment (infusions every 8 week) until the third trimester. Then I will stop until after the deliver. They said the reason to stop is because the baby needs to get vaccines that might cause reaction because of a low immune system (formed only on the third trimester). If I really need the infusions on the third trimester then the baby needs to wait one year before getting the vaccines. No concerns for breastfeeding while taking the medication. Hope this helps and good luck!

I agree on the Remicade. I was on Remicade when I got pregnant and timed my infusions be done by week 32, then waited until 6 weeks post c-section (my little guy was born at the end of week 38).  I too breastfed on Remicade.  I skipped only live vaccines for my baby (rotovirus), but all others were just fine to get on the regular schedule.

 

I had no issues with the scars.  I had the midline cut for my baby girl and then a bikini cut for my baby boy.  All healed fine!

 

Best wishes!

Laura

I had j-pouch sx in July of 2007. After trying for children for several years (married in Oct of 2008, age 29) and after Clomid and one round of IUI a histosalpingogram showed blocked tubes. Not sure if they were like this before my sx but long story short we did IVF and it took first time. No issues with the j-pouch and recovery (I had a c-section) was nothing compared to the setbacks I had with the j-pouch sx. They did a bikini line incision so it's just one more to add to my other "battle" scars. Good luck! Any questions just ask. I have 2 13 month old boys.

Hi Sara79,

Were your blocked tubes blocked from scar tissue or filled with fluid? I had an ileostomy for 20 years (received it at 1 week old, multiple surgeries in between, then successful reversal at age 20). I've been trying to get pregnant for 4 years and the HSG 2 years ago showed that I had 1 fluid-filled tube. I'm told the toxic fluid can leak into the uterus and kill any embryo that may form. My option given to me was IVF, but not until I have surgery to block/fix/remove the fluid-filled tube. I've been scared and putting off doing anything because I'm terrified of having any surgery in that area and damaging my bowels and giving me another ileostomy for life this time. Did you have to have any surgeries to do anything with or around your tubes before doing IVF? 

The hystosalpingogram showed tubal blockages (tissue, not fluid). I underwent a laprascopic procedure in 2011 to remove additional scar tissue from around my ovaries and tubes. I did ask my Dr about having sx done to unblock my tubes but he advised against it because he didn't want to risk further damage to them. Please don't be scared. I know it's easier said than done. Have faith!

I had blocked tubes that were classified as hydro, I tried IVF without getting the recommended Essure placement and it did not work. I ended up getting ESSURE and it completely blocked my tubes. After healing from that procedure I got two frozen embryo transfers, which resulted in my current pregnancy. I'm currently 10 weeks, super excited, extremely blessed after trying for over 5.5 years!

Hey Ashlea,

 

Curious if you are pregnant yet! I am doing IVF too. Relative to the ridiculous hell of my colitis and colectomy (7 surgeries in all) I have felt like it was really very manageable. I got pregnant the first time, but miscarried super early. Anyway, you must be getting deeper into the process, so I hope there is someone small growing inside you. Cheers!

happy to say that I now have a beautiful 3 month old baby girl! We did IVF in October. I only produced 2 eggs and only one took. I had my last Remicade done in September. I didn't want to be on it if I got pregnant. I had the normal morning sickness my first trimester. a few scares with bleeding. But other than that I had a perfect pregnancy. Felt better than I had in years. Towards the end I had some pressure problems from her growing. She weighed 7 lbs 8 oz and was born via c section at 38 weeks. Once she was about 6 weeks old I restarted Remicade bc my symptoms came back. If you have any questions feel free to ask.

Congratulations! awesome news!!!