Info on J-pouch surgery and it’s effects on pregnancy and birth

Finding research on the effects of J-Pouch surgery on pregnancy and birth is difficult. A friend asked me if I had anything in my textbooks on the subject, so I began digging around to see if I could find anything for her. Here are some quotes from medical professionals and parents alike. The opinions vary, but it is helpful to get a second opinion when making a decision about your own healthcare management.

“Both men and women who have had an ileoanal reservoir procedure and have a J-pouch have become parents. Most of the women have caesarian sections but there are women who have had vaginal births after this operation. Thirteen percent of women in our surgery have carried a pregnancy to term.” ~ UCSF Medical Center

“Some studies suggest that fertility may be decreased after an ileoanal pouch procedure, but this by no means suggests that women who have undergone this procedure can’t have children. Indeed, many woman of child-bearing age have spontaneously conceived and given birth successfully after this procedure. It is possible that pelvic scarring may be the cause of this decreased fertility, and therefore the current laparoscopic techniques used at NewYork-Presbyterian Hospital are attractive in that they reduce the amount of internal scarring.” ~ New York Presbyterian Hospital

 “Many female patients who undergo surgical treatment for ulcerative colitis are of reproductive age, and there is therefore concern regarding the impact of pelvic surgery on both fertility and the ability to carry a fetus to term. A majority of patients will have abnormalities on hysterosalpingography following proctocolectomy, and this may impact the ability to become pregnant. A recent meta-analysis reported that the infertility rate rose from 12 percent preoperatively to 26 percent postoperatively; sexual dysfunction also rose from 8 percent preoperatively to 25 percent postoperatively. A majority of women who have undergone proctocolectomy will be able to carry the fetus to term and deliver vaginally. Hahnloser reported that there was no difference in birth weight, duration of labor, delivery complications, vaginal delivery rates, and unplanned cesarean sections. Although pouch function may worsen, particularly during the third trimester, most studies show that no longer term differences persist, even after vaginal delivery.” ~ American Society of Colon and Rectal Surgeons

“In 1997 at the age of 39 I fell pregnangt(after years of infertility) and the growing abdomen and uterus caused the valve to lose its pathway into the pouch. Following the birth I had correcvtive surgery but it was unsuccessful due to the abdominal muscles thinning out and a prolapsed stoam/valve. The only option was to transfer the pouch to the left side and re-construct a new valve. Four months later I am doing very well, and am relieved that I am able to continue without having an external bag. If my sphincter valve had been slavaged twenty years ago I could have been able to be re-connected i.e. a j-pouch.” ~ The J-Pouch Group

 “On the baby front, I did need to do IVF to get pregnant, but it worked first try. The effect on my ileo was non-existant, except that I normally use convex wafers and as my belly grew I switched to flat ones. Back to convex after delivery. I did have a major bowel obstruction that lasted 5-6 weeks in my fifth month. I was on a liquid diet and in the hospital about 15 days. However, they were able to catheterize the ileo and hold the obstruction open to get me through. Dr Peter Mowschenson (surgeon) at the Beth Israel in Boston took care of me during my pregnancy (Lahey doesn’t do obstetrics so Dr Roberts couldn’t care for me). Before and after that a very normal pregnancy. I delivered by c-section after a consult with my high risk OB. He was willing to let me try a natural delivery but told me that with a planned c-section, he could plan and take precautions to work around and protect my GI system. IF I tried a natural delivery and needed an emergency c-section, he wouldn’t have time to do that. Since my Mom needed 3 c-sections without surgical issues, I decided to go with the planned c-section. I delivered a 7lb 10oz baby at 37 1/2 weeks. He was delivered early intentionally so that I wouldn’t go into labor. He was perfectly healthy and still is.” ~ The J-Pouch Group

“Since I was 14, it’s been a planned c-section being what I’d have to have. I don’t have a large intestine anymore, thanks to an extremely severe case, as in it couldn’t have been worse, of ulcerative colitis (yes, it’s the Wiki, but the articles on this topic are very good), and my small intestine has a j-pouch held together by stables. The pushing COULD cause rupturing or other damage. My IDEAL birth would be a water birth at home. That’s not happening. However some more recent studies are showing that having a j-pouch and a vaginal delivery might not carry as high of risks as previously thought. Some specialists still prefer a c-section to protect the j-pouch. There is certainly a bit of increased risk for a vaginal delivery over a c-section.” Are We Parents Yet? The Clements’ IVF Journey

“I’ve been told that a c-section is NOT mandatory-by my surgeon. From my research, it seems to be almost 50-50 that a women in our situation would need a c-section. The decrease in fertility after multiple surgeries is due to scar tissue/adhesions. Everyones body heals differently and we’ve all had different #’s of surgeries, so it’s hard to say who will have problems or not. But there have been studies on post j-pouch fertility, and it is decreased significantly (according to the Mayo Clinic studies the Dr.’s showed me when I went). But those studies were based on open procedures, and to my knowledge, there haven’t been any finished studies on fertility after laproscopic procedures.” ~ HealingWell.com

“As ostomy is a surgically formed artificial opening which serves as the exit site for connections from the bowel to the outside. Ostomy operations do not seem to impair fertility and complications such as prolapse of the stoma (ostomy opening) and change of appliance fit will resolve after birth. Occasional obstruction of the ileal reservoir do not interfere with pregnancy. Difficult defecation has been reported during the third trimester in about 10% of cases. Continence is the same as before pregnancy. Total parenteral nutrition (TPN) may help a woman with poor absorption to carry her pregnancy to term or even to conceive. This should be considered when large portions of the small intestines have been removed leading to severe diarrhea. TPN carries certain risks (such as sepsis from the IV site), and is very costly ($5,000 monthly). Malabsorption of fats, fat soluble vitamins, and B vitamins, ester and electrolyte imbalance, oxalates appearing i the urine, and gall stones may occur. During labor, there may be an impaired ability to push due to scar tissue obstruction or the location of the surgery. The hormonal changes of pregnancy can affect the skin and cause poor adhesion of ostomy appliances or the need for more frequent changing. Skin wafers and extra adhesive can help with this problem. Preparations designed to provide a protective film over the skin will help the skin stay healthy and also aide appliance adhesion. The stoma will change from circular to more oval, may become shorter or longer and will become more lateral as the uterus enlarges. The stoma can be damaged if the appliance fits poorly. If the stoma retracts below the flange of the appliance, more leaks result, especially when the woman is lying down; a softer, more moldable flange may help. Lying down also change the position of the stoma, making leaks more likely; positioning with pillows should help. As pregnancy advances the woman may require a full-length mirror to see how to apply the appliance. Labor presents few problems for the woman with an ostomy.” ~ Holistic Midwifery Vol. 1 by Anne Frye March 2008 Labrys Press p1083

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16 comments

  1. Hi, this is Aria Clements. I wish you had read my birth store and what ended up happening. It’s a fallacy that a natural birth is not possible with a j-pouch. I was parroting what my c-section-loving OB/GYN had told me. My body was telling me not to have a c-section while the surgeon told me I was guarantee death with a vaginal delivery. She also gave me odds of no greater than 50% of even living through the c-section.

    A couple VERY highly respected OB/GYNs local to where I moved at the end of the second trimester (one well-respected enough that he doesn’t take insurance because his rates are so high, yet he’s got no shortage of wealthy clients willing to pay out-of-pocket, and the other has been in the media for advocating birth choice rights and who has a large, rabid fanbase of mothers he’s been the doctor for) told me that there’s really no reason to not have a vaginal birth after a couple years, when the j-pouch is “established”. But for liability reasons and “to be on the safe side,” many doctors will insist on a surgical birth. It covers their butts. Judges see c-sections as “everything possible was done” when something goes wrong,

    In the end I listened to my body. I found a wonderful midwife, and had a homebirth. There was no rupture, not even any slight tearing. My daughter came out chin-first, sunny-side up, and at an angle, the broadest way a baby can come out vaginally, a way any hospital will rush into an emergency c-section. I had a very capable midwife who’d seen this before, and she knew how to help me through it.

    http://theclementsbabies.wordpress.com/ references my new blog (I never took down the old tickers, so ignore those.) Here is a summary from my new blog of what actually happened: http://talesoftheclementsfamily.blogspot.com/2009/12/birth-summary.html

    I am looking forward to doing it again. Another HOMEBIRTH. I’m not going to subject my body to surgery because a doctor wants to cover him or herself on the liability-front. I’m going to look out for me and my body, and it’s disgusting how so many doctors will put me at an increased risk, and even lie to me, for the sake of their malpractice premiums. No birth is 100% without risks, not a home birth, not a c-section, and anyone who says otherwise is lying, but some births come with increased risks. My small intestine is adhered to the front of my uterus. A c-sectin would have meant cutting through them. The GI surgical team for Stanford was going to be on hand to put me back together if there was a way to save the intestine the OB/GYN was planning to cut through. I wasn’t willing to take that risk.

    I’m glad I had a homebirth. I’m glad my daughter was born right beside my bed. I can’t wait to do it again!

    If anyone has any questions, comment on either of my blogs. I get notifications to moderate the comments. If you want me to e-mail you, post an e-mail address and if you don’t want it made public, let me know and I’ll e-mail but not post the comment with the email.

    1. Thank you so much! I’m SO glad you shared the rest of the story, and I hope more women who read this article are encouraged by your story! I and two home births myself and I recommend it to everyone I know, so glad to hear there are midwives out there who will assist a woman after j-pouch surgery. After you next homebirth, you’re welcome to share your birth story here, maybe we can a special post just for you :0)

      1. Sadly not many midwives will. With as much backlash as there is against midwives as it is by ACOG and those who have the mindset that doctors are god because they’re *doctors* and they went to *medical school.* As if doctors aren’t humans subject to greed like anyone else? And it doesn’t help how out of control malpractice suits over things doctors can’t control are. There is one doctors for a very, very, very large area here who will back midwives, and per California law, a midwife can’t practice without having a doctor back her.

        Unfortunately a lot of medical decisions are made on behalf of patients both for money as well as for liability. More unfortunate is the sad fact that what’s got lower liability is usually what makes a doctor more money.

        Now I don’t doubt that there are excellent doctors out there who care so very much for patients that they’ll do anything (I had one doctor do a procedure in a way that’s not legal – precisely to preserve my j-pouch instead of giving me a permanent ostomy), and sometimes c-sections are truly needed. So I’m not knocking all doctors or all c-sections, just the speed at which doctors jump right to a convenient c-section.

        Originally I was going to have one no later than 35 weeks, likely by 32 weeks. My original OB/GYN said that because of having a bicornuate uterus, I’d probably go into labor anyway, and with the j-pouch (which I had to explain to her since she’d never encountered someone with one), it wouldn’t be safe to go full-term. The plans included an expected extended stay in the hospital for my baby. :( Thankfully I listened to my instinct.

        Whether we mentally want to live or die, our bodies want to LIVE, which is why when someone tries suicide, the body still tries. I do not believe our gut instincts would tell us to do something our bodies couldn’t handle, or to avoid something needed. Every shred and fiber of my body screamed to run from being cut open and to have a vaginal birth. I couldn’t ignore my body, and that’s when I started extreme research, tracking down other j-pouch moms who’d had vaginal deliveries and what their outcomes were. I found many moms, and not a single one had any problems at all. I found several j-pouch moms who’d had c-sections who’d experienced problems as severe as one woman’s intestine being cut so bad she had a permanent ostomy. I talked to my old surgeon and to other surgeons too. Not OB/GYNs, but other GIs. I was told quite bluntly that the c-section recommendation is generally for liability reasons and because no one says that a c-section that went wrong shouldn’t have been done.

        I encourage all women AND their babies’ father to research, to really research, and to try to find sources as unbiased as possible. To ask themselves what benefit doctors have for their recommendations. To research the outcomes of different procedures. To ask themselves why the c-section rate has skyrocketed and, if it’s so safe, why the death rate has skyrocketed with it, making the US #2 in terms of maternal and neonatal death rates among all developed countries. Most importantly, to sit down and shut off their brains and just listen to their bodies. Not to let mental fear take over. Just listen to what their bodies tell them they can do.

      2. You have a powerful testimony, and I’m so glad you’ve told us about it, because this post has reached the top of google searches on j-pouch surgery and pregnancy, and I know it will encourage other moms who are in a similar situation. I strongly encourage all my clients to do their own research before they make any medical decision, but each choice, even the seemingly common sense one of “doctor’s orders” can have serious consequences. I am just about to publish a book, Inspired Birth, for Christian maternity care providers, and I have a chapter specifically addressing the greed involved in maternity care, including legal issues. I am very thankful that there are some care providers (doctors, nurses, midwives, etc.) out there who do practice based on evidence and holistic, woman-centered care, but we really do need to work on educating the public. Both the care providers to trust in their instincts, and women and their families to do the same. Maybe this sounds funny, but I’m proud of you Aria for sticking up for yourself! It takes a lot of guts to follow your instincts, but the rewards are great!

  2. I had my colon removed due to severe ulcerative colitis when I was 17. I then had surgery to form a J Pouch. I got married when I was 22 and desperately wanted to have children. Getting pregnant was not easy, but I managed. the pregnancy was not easy; I also have a big piece of mesh that covers my whole abdomen from repair of multiple hernias from surgery. I had so much pressure on the pouch that incontinence was a problem. In the third trimester I developed a pouch prolapse that I hoped would correct itself after my daughter was born, but it didn’t. I had a c-section that was scheduled two weeks before my due date. I had a healthy 6 lb 7 oz baby girl, but later needed to surgically try to fix the prolapse. The first attempt to fix it failed. I went to surgeons all over the place, but no one was comfortable operating on me because of the mesh and the fact that my surgeon already tried to fix it. Finally I was told to go to the Cleveland Clinic where two surgeons were finally able to come up with a different approach to the surgery. It was a success, but during the surgery also had my tubes tied because they felt that another pregnancy would ruin the pouch. Now, five years later, I desperately want another child, and regret having my tubes tied. I am now willing to risk the loss of the pouch for another child, and am considering either reversing the tubal ligation or IVF.

    1. Wow, Erin! You have certainly had enough trials for any young woman! Thank you for sharing your experience, and I am glad you were able to have your child. My friend, the one I did the research for, has still not conceived. But I truly understand your desire to have more. If you do decide to have another child, I hope you come back to share your story.

      1. Hi to anyone that reads this,
        I currently have a illeostomy, I have had this for 10 years now and everyday hate it more and more. I am sceduled to have the j-pouch surgery next month and really can not wait! The reason i have had it so long was because fear, money,time and most importantley I want a baby, My doctor always has told me if you want a baby, then have your baby first. I guess the surgury really makes it hard to carry and then deliver the baby. So I made the sacrafice to wait to have the surgery. We did IFV 5 times and half of those times, we used an egg donor. All I got out of this was time lost,and a whole lot of DEBT. So I am now moving forward with the j-pouch. Most important although my last doctor says no dont try my other doctor did not evan mention it, so is it possible to carry a child, do you know if it effects the FSH levels? I know this does not have to do anything with pregnancy but after the 1st step of the surgery did you go back to work? Call me crazy but I am planning on in between the j-pouch surgery and closing the soma, to work. Has anyone ever done this ? How long were you in the hospital? I having the surgery at the Cleveland Clinic. Anyone, Anyone PLEASE HELP

      2. Hi Tina, I’m sorry you have had such trouble conceiving, but I completely understand your decision to go ahead and have the j-pouch surgery. I cannot speak to your questions about going back to work between surgeries because I have not personally had j-pouch surgery, but I do know it is possible to get pregnant, carry a baby to term, and even give birth naturally, without doing damage to your digestive system. Some of the women who have commented on this post have shard similar stories.

        My suggestion would be to speak to other doctors and get multiple opinions, as well as researching what other women’s experiences have been (which is seems you are doing!). Everyone has a different experience and of course there are no absolute guarantees of any outcome, but the best thing is to learn about all your options, all the pros and cons of each and make the best decision for you.

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  4. I just had my first baby via c-section in november… I really wanted to have a natural birth but was always told that it had to be a c-section because of j pouch surgery in feb 2005… I really wanted a homebirth but never thought it was possible my husband and i debate over the next birth all the time he thinks we should continue with the c-section but I would love a natural (even if not at home) birth… does anyone have any info on vbac with a j pouch?

    1. I would think that risks and benefits would still apply for both natural birth with a j pouch and VBAC, but I don’t know if there would be any new or increased risks because of a VBAC with j pouch. You should start interviewing midwives and doctors soon so you will be more prepared.

      1. I plan on at least asking I can live with having a csection if I have to but not asking and learning that I could have later would kill me :-) thanks for the input!

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