I wanted to add some info. When I had my j-pouch surgery they told me that there was a small chance of there being issues conceiving. It was not until they went to do my tubal ligation and found that my uriter was fused to my fillopian tube with scar tissue  (from my surgery) that it was determined that the reason it took us 2+ years to conceive was because of this. My girl was a miracle baby. I havery one boy from before my surgery while I had UC.

So two things:

1- There is a new procedure during the J or K pouch surgeries that you can request where they move your uterus and hang it in a special way to reduce the scarring and damage to it. I had this done and had zero scarring that impacted pregnancy, got pregnant right away both time. It does require an additional scar though. For me it was worth it. 

 

2- My high risk prenatal doctor said I was ok for vaginal births but when I talked to my surgeon he STRONGLY encourage me not to, he has had ten cases of pouch damage that left permanent issues. If I had not consulted my surgeon I may never have known so after that I asked my pouch group and sure enough 2 of the 3 women who birthed vaginally had problems. One tore the pouch from the wall and had to have it stitched back, causes some pain occasionally now but is ok otherwise. The other one now has permanent leakage issues that cannot be resolved. I so badly wanted to birth the baby vaginally but its not worth the possibility of a lifetime of any more issues even if that chance is low for me. Everyone has to weigh their own risks and choices.

I had a c-section because my doctor was concerned about pelvic floor integrity later in life. It is something to consider.

You are all amazing. Thank you all for sharing your personal experiences and stories! I've read them all and it is so reassuring as my husband and I move towards this part of our lives. I'm so glad that I found this community.

 

Much love.

Statistics say that if you have a colectomy you have a 48% chance of becoming infertile. I had no idea that I was even capable of becoming pregnant and right now I am 17 weeks. My doctor advised for me to get a C-section because the pressure from pushing out the baby vaginally  can cause the J pouch to rupture which can cause several, some fatal  complications for mom.  It's just all-around much safer to get a C-section. My fiancé and I weren't even trying and I got pregnant so in a way for us we feel it was God's  way of telling us it's our time because I'm 30 and he's 32 and we weren't sure  how my fertility would be due to the surgery.  ( if you aren't religious I meant no offense ) I hope the answers to the survey helps you out and I hope that you and your husband are able to conceive. I will let you know that since I got pregnant I have been in the hospital 4 times for what they thought was pouchitis but I got a new G.I. doctor and he actually diagnosed  me with something called irritable pouch syndrome which is just like irritable bowel syndrome but in your J pouch. I don't think this was all caused by the pregnancy,  as I was having this problem before I got pregnant, it just so happens that because of my uterus growing and all of my organs shifting around  and honestly the stress of realizing I'm going to be a mom, all of this  contributed to  my J pouch becoming  irritated and inflamed.  But the doctor is not 100% confident that the pregnancy had anything to do with it. But other than that in the normal things you go through during pregnancy I've been fine. As long as you have a great high-risk OB you will be fine and have a hopefully wonderful healthy pregnancy.  And just because I went through this doesn't mean you will. Every woman's body is different and everything that you go through will be worth it in the end. Positive thoughts your way And Good luck!

Statistics say that if you have a colectomy you have a 48% chance of becoming infertile. I had no idea that I was even capable of becoming pregnant and right now I am 17 weeks. My doctor advised for me to get a C-section because the pressure from pushing out the baby vaginally  can cause the J pouch to rupture which can cause several, some fatal  complications for mom.  It's just all-around much safer to get a C-section. My fiancé and I weren't even trying and I got pregnant so in a way for us we feel it was God's  way of telling us it's our time because I'm 30 and he's 32 and we weren't sure  how my fertility would be due to the surgery.  ( if you aren't religious I meant no offense ) I hope the answers to the survey helps you out and I hope that you and your husband are able to conceive. I will let you know that since I got pregnant I have been in the hospital 4 times for what they thought was pouchitis but I got a new G.I. doctor and he actually diagnosed  me with something called irritable pouch syndrome which is just like irritable bowel syndrome but in your J pouch. I don't think this was all caused by the pregnancy,  as I was having this problem before I got pregnant, it just so happens that because of my uterus growing and all of my organs shifting around  and honestly the stress of realizing I'm going to be a mom, all of this  contributed to  my J pouch becoming  irritated and inflamed.  But the doctor is not 100% confident that the pregnancy had anything to do with it. But other than that in the normal things you go through during pregnancy I've been fine. As long as you have a great high-risk OB you  Will have a hopefully wonderful healthy pregnancy.  And just because I went through this doesn't mean you will. Every woman's body is different and everything that you go through will be worth it in the end. Positive thoughts your way And Good luck!

Statistics say that if you have a colectomy you have a 48% chance of becoming infertile. I had no idea that I was even capable of becoming pregnant and right now I am 17 weeks. My doctor advised for me to get a C-section because the pressure from pushing out the baby vaginally  can cause the J pouch to rupture which can cause several, some fatal  complications for mom.  It's just all-around much safer to get a C-section. My fiancé and I weren't even trying and I got pregnant so in a way for us we feel it was God's  way of telling us it's our time because I'm 30 and he's 32 and we weren't sure  how my fertility would be due to the surgery.  ( if you aren't religious I meant no offense ) I hope the answers to the survey helps you out and I hope that you and your husband are able to conceive. I will let you know that since I got pregnant I have been in the hospital 4 times for what they thought was pouchitis but I got a new G.I. doctor and he actually diagnosed  me with something called irritable pouch syndrome which is just like irritable bowel syndrome but in your J pouch. I don't think this was caused by the pregnancy it just so happens that because of my uterus growing and all of my organs shifting around  and honestly the stress of realizing I'm going to be a mom, all of this caused my J pouch to become irritated and inflamed. But other than that in the normal things you go through during pregnancy I've been fine. As long as you have a great high-risk OB you  Will have a hopefully wonderful healthy pregnancy.  And just because I went through this doesn't mean you will. Every woman's body is different and everything that you go through will be worth it in the end. Positive thoughts your way And Good luck!

I have had my pouch for 30 years. My daughter is 25.  Because I am keloid, my j-pouch surgery caused scarring in my tubes and I was unable to get pregnant the old fashioned way. I used invitro to become pregnant with my daughter.  I had to have a c-section because she was too large. Good luck!

Hello.

I just completed the survey but wanted to add a few tidbits as there is much more to my story.  We have 6 children, all post-pouch.  All were conceived without assistance although I have do have low progesterone and must supplement that during the first trimester.

 

Three of my pregnancies have been uneventful; three have had various stages of obstructions due to scar tissue. 

I've also delivered all six vaginally and have torn with 5.  I'm almost 44 and must say that I have more issues with urinary continence (yuck!) than I do with my jpouch.   

Thanks for sharing, it's so read to hear this  

I needed help getting pregnant and used Chlomid/IUI. But since then, I have been able to get pregnant on my own and havent needed help.

As with some, I was told I would not be able to conceive also after my surgeries. We had two beautiful little ones and were content that we were able to have them.  I was 29 when I had my surgery removing all of my large intestines and colon and having a Jpouch created from my small intestines. I got pregnant when I was 39 (total surprise) Unfortunately I had many issues with loss of 40 lbs during my pregnancy, also having to take 2 blood thinning shots everyday, gestational diabetes, to top it all off our little Sarah was breach. It was a very hard 9 months but total worth every minute as we were blessed with our little Sarah. 

hi just wanted to say i was 23 when i had my j-pouch and reversal and me and my partner started trying strait away it took 18 month naturally, didnt think it was going to happen best day ever, didnt have any problems through out pregnancy apart from usual morning sickness for the first 3 month and could feel my scar itching and pulling as i got bigger, to be honest my pouch worked better whilst pregnant must have been coz i was eating well and happy  i was classed as high risk but that worked out well for us as we got more scans and got to see our healthy baby girl more than we should have ..... i did get a c-section but that was strait forward also no problems, my little princess is 3 years old now and thinking of trying again next year so fingers crossed everything runs as smooth as it did first time around

It took us 15 years , including infertility treatment (not ivf), and we adopted our first daughter.  Then at 42 surprise we naturally get pregnant.  I saw a high risk 1x then just followed her recommendations with my ob.  I had frequently tests to make sure baby  was growing well.  And labs to keep an eye on some electrolytes and other things for me.  I had a  c-section, risk of tearing to great.
Last trimester, The pressure on my pouch was horrible.  Frequent bowel movements , and even incontinence especially at night.
Was worth it though , we now have a healthy (very active) 1 year old . 
Good luck!

I was on the pill when I got pregnant with my first child. I had evening sickness. I could not eat at all in the evenings! That lasted about 4 months.

I got pregnant with my second while on the pill and nursing. I was not as sick as my first, but more throughout the day.

My doctor told me there would be no problems having kids. (Other than having kids. He had 3 and didn't recommend it to anyone��)  I think everyone's experience is different, just like "normal" people.

Its really interesting hearing everyone's stories. I had 2 pregnancies before my pouch surgery and wasn't well at all. Then after the surgery it was 5 years before I got pregnant again. I was on fertility treatment for a while but got pregnant after I stopped the treatment. All my births were normal and I had a home birth after the pouch surgery.

So everyone has a different journey!

I have had trouble with a stricture at the anastomosis in the last 8 years but found the FODMAP diet to help controlling the pouchitis which results from it.

Good luck!

I also felt as though the survey required more details to back up my answers.

We got pregnant about a year and half after my surgeries, however we waited that long on purpose due to the surgeons recommendations to allow everything to heal thoroughly for a year before trying to get pregnant. We did not struggle with fertility secondary to the surgeries, however I had most of my surgeries done laproscopically for the exact purpose of trying to avoid the scar tissue that can cause fertility issues. 

 

I did see a high risk OB doctor, however, I was already an established patient at the high risk practice from my previous pregnancy while I still had UC. My surgeon had told me that I likely would be considered high risk, not because it necessarily imposes a high risk, but rather because not many doctors see patients without their colons, so rather than trying to see a general OB, I went back to the high risk doctors. I was expecting a pretty easy pregnancy now that my UC was cured.  Not the case. With the JPouch, I struggled with my electrolyte levels constantly, especially my sodium levels.  So much so, that I had to be hospitalized twice before I delivered. The doctors had a hard time figuring out the cause, even the gastro dr at the hospital (not one of my doctors) was at a loss to why my electrolytes were so low. What it boiled down to was that hormones causes me to have runny stools, especially with the JPouch. I had had watery stools since I had gotten pregnant. Wasn't a problem that I was concerned with as I didn't need to necessarily go to the bathroom more often and there was no pain. The consistency was just different.  Anyways, I was trying to be so good by drinking enough water, especially with the pregnancy plus no colon, so I was trying to drink 3 liters of water a day. That on top of the watery stools was apparently flushing all the electrolytes right out of my body. After the second hospital stay and several IV's of sodium water, they instructed me to not drink anymore water, but rather only Pedialyte :/ I was surprised, but it worked. I ended up getting my blood drawn weekly after that to check the electrolyte levels for the remainder of the pregnancy. 

 

As far as natural vs C-section delivery...I did have a c-section, but it had nothing to do with the Jpouch. My surgeon and OB doctor said that vaginal delivery would be completely fine, so that was the plan. However, during labor my baby flipped into the breach position and they couldn't turn her back around...so...maybe the extra room from having no colon gave her the room to do summersaults?? Anyways, my vaginal delivery plans quickly changed to a mandatory c-section. I think the OB doctor was honestly more concerned with doing a c-section and messing up the Jpouch, but at that point there was no other safe options. All was well though and baby was healthy through all of it, so we are blessed Every person's pregnancy will be different but you will make it! Good luck to you!!  

I agree with the others who have posted about this subject - it's complicated. Every case will be different and you might be surprised. I was convinced I wouldn't be able to conceive naturally since I not only had the j-pouch surgery but also had my colon perforate. I knew I was full of adhesions because I had to have surgery to remove them. None the less, as soon as I got serious about conceiving by tracking my fertility I got pregnant. It turned out I hardly had any scar tissue in that area. You really will not know until you try or have tests run. My pregnancy was low risk except for fetal growth issues early on that ended up resolved. She ended up being 80th percentile despite spending some time at 14th. My pouch has never behaved better. In fact my fistula healed! I had a c section because I had a fistula and my OB told me later that based on the baby's size it would have likely been a rough delivery without any complicating factors. 

Hello 

 

Thank-you for asking to take this survey. However, you need more info before you get the full story. I was around the same age as you when I had my surgeries and had ulcerative colitis. When my husband and I decided to try and have kids I thought that all would be great (my health was awesome). However after 6 months of trying I went right to my GP (who has been very supportive and informative throughout my surgeries and recovery), he recommend that I try for another 2-3 months and then check back with him. Still no luck. He recommend that I go to a fertility specialist. The fertility specialist tested me and found out that I had so much scar tissue on my fallopian tubes that it caused bacterial build up that created a toxic uterine environment (not good for embryo implantation). The scar tissue and bacteria were left over from all of the surgeries. We were able to block my tubes and go through one round of successful IVF therapy. We were so lucky to be implanted with 2 healthy embryos (giving us twins in the end). Pregnancy was great and I was well looked after by my health care providers (they were more worried about my blood pressure and ability to handle the twins rather than my J-pouch). I wasn't able to deliver naturally (although there was no reason I couldn't have...one twin was in distress during natural labour so they did an emerg c-section). I made a full recovery (a c-section is a breeze compared to our surgeries). Make sure that you are aware that the surgeries that we have had cause massive trauma to our bodies and that getting pregnant may be a challenge (if it isn't happening in a relatively quick time frame, get looked at and tested by a fertility specialist who knows your health and surgery background).

 

The best of luck and I hope that everything works out for you.

Me and my husband at the time tried for 2 years. I had unexplained infertility. I went through my first IVF cycle, and it didn't work. Then I had a few cancelled IVFs because of ovary issues. But my 2nd IVF I was blessed with my baby girl. She is now 6 yrs old. I opted for a C-Section because I was afraid if I had a natural birth, I would risk tearing things down there, or having issues with my J-Pouch after. I have had great control with my J-pouch and didn't want to rise incontinence issues. Also my thought was is if something happened to me, I couldn't be with my new baby. So C-Section it was.But I have heard of others having natural birth with a J-Pouch as well. I am in a new relationship now and engaged to a great man. We have talked about a child and I know it could be different this time, or it could be the same. Only the future knows. I wish you much luck! 

My surgery was years ago now, so maybe things are different now.  It took five years before I was able to get pregnant.  The Dr performing my c-section said there was alot of scar tissue from the colectomy. After that though,  I had no problem getting pregnant--we ended up with 3 blessings in four years.  :-)  The pregnacies themselves were fine,  much better than my first, pre-surgery.

Hi,
Other than a hormone being off which had nothing to do with my jphouch, I was able to get pregnant quick. Pregnancy was super easy. I was told I could deliver naturally but decided to go with what my colon and rectal surgeon thought would be best. He was at the csection and said all my scaring is behind my uterus which is probably why I had no issues getting pregnant this time without even actively trying. I'm currently 24 weeks and it's going just as good as the first pregnancy. Still not seeing a high risk OB and again will have a csection that my surgeon plans on being present for as well.

I know it's hard, but try not to stress about it too much. Good luck!

My daughter struggled with repeated problems with pouchitis and pancreatitis after her J-Pouch surgery until she got pregnant with her first child.  All the hormones of her pregnancy seem to balance her body as she hasn't suffered with pouchitis or pancreatitis since then.  She now has three healthy boys (7,5,&2); all delivered by C-Section.  The one problem that she has seen is that her pregnancy have gotten more complicated.  With the last pregnancy she suffered with morning sickness for almost the entire pregnancy and end up in the hospital multiple times due to becoming so dehydrated. 

I was adopted as a baby & it turned out I have FAP & didn't know it. 5 doctors over 5 years later & finally found one that removed my whole colon & received a j-pouch back in 96, when I was just about to turn 24. Was months if not weeks away from stage 4. Decided not to go through with any chemo or anything. Fast forward to 2010, I was 37 and had our first, and only, lil girl. C-section, recommended by my doctor. She's now 5 and as healthy as any other child her age. I didn't get any tests that said whether or not she'll have colon cancer, and will unfortunately be checked at 9 years, i think. The pregnancy was Okay, parts were of course Great whole others not so much. Had to take blood thinning shots 2ce a day. That was hard.  Then got gestational diabetes. Was nauscious most of the 9 months, incrising from beginning to end. But most of that is a gene thing and really nothing anyone can do about it. Everyone's different just remember that. :-D

I also feel that I need to comment.  I had no clue that my surgery could, and would, affect my fertility.  I was 19 when I had my surgery and it didn't occur to me to even ask.   I didn't try to get pregnant until I was 35.   Needless to say after being tested it became very obvious that I would never get pregnant naturally due to the changes, and consequences to my female organs, caused by my surgery.   I was fortunate that after just one round of IVF I got pregnant and have an amazing 9 yr old daughter today.  Unfortunately two subsequent IVFs didn't work.   So I guess my point is even if you don't want kids right now at least determine where you are fertility wise so you can make an k formed decision.

I took almost a year to conceive because of what we later determined was significant scar tissue at my iliostomy sight. 

Once pregnant I had no issues and had the c section so I would not have any possible damage to my pouch.

Hi!  I had my pregancy 13 years after my colectomy and my doctor had few issues with it (but I was also 10 years post liver transplant so they worried more about that!).  I had a wonderful pregnancy experience.  The only issue is at about 8 months it felt like he was sitting on my jpouch (instead of my bladder like most women complain about!) and I got my first case of pouchitis in 12 years.  I did have problems staying hydrated towards the end as well.

I chose to have my baby at home. I know that isn't for everyone but it was right for my baby.  I didn't feel like a vaginal delivery compromised my pouch at all.

Just a question?  You are so young, could you not have a "J" pouch made?  Or a "S" pouch?  That's what I had done and my "bag" is now inside (made with my small instestins - I had no more colon) and much better than an outside pouch.  Much better.

 

c.seguin

 

Hi! I took the survey but I feel like I need to add more info as my answers don't tell the whole story . .. . . I was told I was infertile after my surgeries, but it was attributed to my hormones being really messed up after having lost so much weight so rapidly when I was sick for so long. My body just never recovered right and so I didn't ovulate. We decided not to pursue IVF, even though I was declared a good candidate. We very unexpectedly found ourselves pregnant after years of just accepting we would only have one child.

 

I also wanted to add that I had made the decision to have a c section after weighing all the pros and cons; however, my high risk ob/gyn was fine with me delivering vaginally too.

 

Good luck!