Hi, I'm Dr. Sushila Dalal, an assistant professor of medicine at the University of Chicago, Inflammatory Bowel Disease Center. Today I'll talk with you about Fertility, Pregnancy, and Sexual Dysfunction in IBD. IBD patients can have healthy pregnancies and healthy children. Really, it just takes a little bit of planning between patients and their care team.
A lot of the things we'll talk about today are covered in this great resource that you can find online, The IBD Parenthood Project, which has explanations and reminders of many of the things we'll go over.
So, in the past, many IBD patients chose not to pursue pregnancy, because they were worried. They were worried about whether they'd pass on the disease to their children, whether they'd be well enough to take care of their kids, or whether they could safely undergo pregnancy.
We know now that the genetic risk of passing down Crohn's disease, or Ulcerative Colitis in your children if you have Crohn's or Ulcerative Colitis, is actually very, very low. For Crohn's disease, it's only a 2.7% chance that a child will have the condition. And for Ulcerative Colitis, it's only 1.6%. The chance is higher if both parents have IBD, but all in all, it's a low risk.
So, for fertility in IBD, patients that are in a stable remission and haven't had prior surgery, should have fertility that's very similar to the general population. However, if you have active inflammation or active disease, it may be harder to become pregnant. A healthy mom makes it easier to have a healthy baby.
Also, if you've had surgery like taking out the rectum, or creating a J-pouch, or having an ostomy made, that may have caused some scar tissue that may make it harder to become pregnant. However, if you have trouble becoming pregnant, it is possible to go through Assisted Reproductive Technology. These are things like IVF or IUI. IBD medications don't affect these, and it's safe to undergo these assisted technologies. However, they might be a little bit less effective in IBD patients.
Unlike the general population, after six months of trying to conceive, IBD patients should be referred to a reproductive endocrinologist or fertility specialist for further evaluation and potential treatment. So that's a little bit sooner in some patients than it might otherwise be.
It's really important to assemble the right care team that can help you plan for pregnancy, answer all your questions, and make sure you're comfortable with the plan. If possible, it's great if you can see a gastroenterologist that specializes in the care of IBD patients.
And if you can see an OB/GYN, called the Maternal-Fetal Medicine specialist, or an MFM, these are OB/GYNs that have undergone specialized training in patients that have chronic conditions, and they can help work with your gastroenterologist to make a good plan for you.
To prepare for a healthy pregnancy, you should talk with your care team about making sure that you're in a stable remission, and you're up to date on your health care maintenance, your labs and nutrition. So it's important that, first of all, you make sure that you're in a stable remission.
It's really hard to interpret symptoms such as abdominal pain, or bowel movement frequency, or things that can really vary due to a lot of factors in life. And it's important that you've seen your doctor, and you've undergone testing. Whether it's your next scope, or a CT scan, or MRI, or if it's a blood test, or stool test, that can show us markers of inflammation. Well, we should do something to really make sure that the intestines are healed and that your Crohn's or Ulcerative Colitis is in a good, stable remission.
It's also important to think about what health maintenance you might be due for. It's possible to do an upper endoscopy or a colonoscopy during pregnancy, but we try to avoid it if possible. So all those things that are routine, and you have to do every few years, it's good to get done beforehand so that you don't have to think about it during the pregnancy.
It's also really important to make sure that those routine monitoring labs are done, and that your vitamin levels have been checked, and all those levels are where they need to be. If you need any supplements that you started them, and have those vitamins at the right level, and that you're at a healthy weight.
We know that the most important thing that we can do to have and plan for a healthy pregnancy is make sure that there is a healthy mom and that you're in the best condition possible for it. So it's really important that you stay on your medications to stay well and that you've talked about any concerns or questions you might have about staying on your medicines with your care team beforehand.
So what we don't want is that you become pregnant and you panic, because you're not sure if this is safe for you and the baby or not, and stop the medications and become sick. So it's really important to have that conversation beforehand so that everyone has all the questions answered and is comfortable with the plan going forward.
Most of our medications can be continued safely during pregnancy. Medications that are commonly used for ulcerative colitis like balsalazide, mesalamine, or sulfasalazine are safe to continue. Sulfasalazine needs a little extra folate supplementation than the other medications but is safe to use.
Medications like our immunosuppressants, like 6-mercaptopurine or is azathioprine, can be safely continued if they've kept you well. If they're being used in combination with a biologic medication, you and your doctor can discuss whether you still need both or whether it might be possible to stop one. But you should discuss it first because that's an individualized plan, depending on how you've done in the past.
Also, newer medications like tofacitinib, don't have a lot of data yet. We try to avoid it if possible in the first trimester, or use it with a lot of caution and monitoring. One medication that we actually need to stop beforehand is methotrexate. That medication actually can cause birth defects or pregnancy loss. So it's important to stop that medicine at least three months before you'd like to become pregnant.
So, to summarize, for medication stop methotrexate at least three months before conception. If you're on sulfasalazine, have an extra folic acid supplementation. If you're on azathioprine or 6-mercaptopurine, you can continue it.
However, if you're on multiple medications to control your ulcerative colitis or Crohn's, you should have the discussion with your doctor-- if you still need all of them, if one of them could be stopped. But if so, that decision should be made long before the pregnancy so that changes can be made, labs can be checked, and we can make sure that everything is stable before you become pregnant.
So what about the biologic medications? Are those safe to continue? The placenta is actually designed to transport antibodies from mom to the baby, because you want your baby to get some of your antibodies. Biologic medicines are antibodies that are targeted to a specific part of your immune system. So, after 20 weeks of pregnancy, the placenta does also transport your biologic through your bloodstream to the baby.
However, this has been well studied in many different studies, and shows that even though the baby is exposed to the medicine, and gets it through your bloodstream, that's OK. It doesn't cause birth defects, and it's safe for them to see that medication.
So, there is a large registry called the PIANO Registry, in the United States. It went from 2007 to 2019, and they enrolled thousands of IBD patients. These patients were on immunosuppressants, they were on biologics, or some of them were actually on both. And they found out that there was no increase in risk of malformations, preterm birth, or low birth-weight babies.
But what they did find is that patients whose disease was not under good control and had active inflammation, did have higher risks in their pregnancy. And so what they concluded from this study is that, again, it's important to stay on medicines that are working and keeping you well, and it's safe for you and your baby to do that.
So what about delivery? Do you have to have a c-section? What do you have to talk about with your OB in regards to how you can deliver your baby? For the most part, many patients with IBD can have whatever type of delivery the OB feels is safest for you and the baby. However, there's a few special conditions where a c-section might be necessary. Mainly, that's in Crohn's disease patients that have active perianal disease.
So, those that have had fistulas, or abscesses, or a rectovaginal fistula if it's been very far away in the past, and it's been completely healed up, that may be an individual decision between you and your doctor. And the recommendation is that, at the end of the pregnancy, that area is examined and looked and checked to see if there's any inflammation or whether a c-section or vaginal delivery would be safest for you.
In patients that have had J-pouches, oftentimes a c-section is recommended. But again, it's a little bit individualized depending on your situation. It's an important thing to bring up with both your gastroenterologist and OB beforehand so that they can make the best plan that's safest for you.
What about the timing of your medications? You and your gastroenterologist will make a plan about when you should take your last dose of medication before your baby is born. It's important that that's individualized to how your disease control has been so that you can stay well up until and through delivery and after the baby is born.
After the baby's born, it's safe to take your medication 24 hours later if you've had a healthy vaginal delivery or 48 hours later if you've had a c-section that's gone smoothly. So you're able to resume your medicines pretty soon after the baby is born because it's important that you're taking care of yourself also.
So what about breastfeeding? Are you able to breastfeed on these medications? The biologic levels in breast milk are very, very low. And the low levels of biologic medication in the breast milk are not thought to be of concern. Methotrexate cannot be taken in breastfeeding either, so that should be avoided.
The oral immunosuppressants, like azathioprine or 6MP, have been studied in small groups of women. And they found that though it varied by what dose the patient was on, by 4 hours after a dose, the drug level in breast milk was essentially gone. So it is safe to breastfeed on these oral immunosuppressants as well.
So what about vaccines? Can a baby who has been exposed to a biologic during pregnancy get all their vaccines? And will they respond to them? They actually will. A baby who has been exposed to a biologic while they were in utero, can't get a live vaccine. There's one that's recommended in the first six months of life, the Rotavirus vaccine. So it's important that your pediatrician knows that you were on these medications during pregnancy, and that the baby was exposed to it.
However, the vast majority of vaccines that babies receive are not live vaccines. They are safe for the baby to get. And it's actually been studied whether the baby is able to get the antibodies they need in response to the vaccines, and the babies do. They do get adequate antibody levels, so they are able to respond to their vaccines as they should.
So we've talked about fertility, pregnancy, and what to do immediately after your pregnancy. Now we'll talk about sexual dysfunction in IBD. There are many studies, both in men and women, of sexual dysfunction. And many studies have found that IBD patients have high rates of sexual dysfunction. Why might that be?
Well, there's several different reasons. Some of it may be direct symptoms of disease. Abdominal pain, diarrhea, the fatigue, perianal disease can directly affect people's sexual dysfunction. They may be on steroids, which can affect function. There may be changes in body image, with weight gain, or weight loss, or surgeries.
There can be pelvic floor dysfunction, in which the muscles of the pelvic floor may not relax as they should, from many years of having frequent bowel movements, or pain, or surgery in that area. We know that there's high rates of anxiety and depression in IBD patients, and this affects people's sexual function. And there also may be prior surgery. Surgeries that have gone into the pelvis do have a possible side effect of causing nerve damage as well.
What can patients do? Who can help if there is sexual dysfunction? First of all, this is something that should be brought up. And that should be brought up in visits with your gastroenterologist. And you should tell them that this is a concern and that this is a problem because there is help.
Help might be with your gastroenterologist, if it's you that's having ongoing symptoms, and you're not in a stable remission, and they can get you feeling better. And it may be with a gynecologist, or a urologist, and maybe with a pelvic floor physical therapist, someone who can help you retrain your pelvic floor muscles or do biofeedback to help you learn how to retrain those muscles.
A psychologist also might be helpful with possible cognitive behavioral therapy. So there's definitely resources that can assist with this. So it's important to bring it up so that you can get the support that you need.
So, in summary, stable disease and stable remission helps with fertility, and having a healthy pregnancy, and a healthy baby. An IBD pregnancy should be planned early. And you should have a discussion with your care team about it-- about what you're thinking, what timeline you're thinking about, and what tests or procedures or medication changes potentially need to be made beforehand so that everyone is on the same page, and all your questions and concerns have been answered.
Most IBD medications can be safely continued during pregnancy to keep you well. Most of them can also be continued during breastfeeding. Sexual dysfunction is common in IBD patients. It should be brought up if it's happening, because there's resources and ways that we can help.
I'm Sushila Dalal, an Assistant Professor of Medicine at University of Chicago's Inflammatory Bowel Disease Center. Thank you for listening to my presentation.
How Does Inflammatory Bowel Disease Affect Women?
If you have IBD, your menstrual periods may be especially uncomfortable. You may also have a harder time getting pregnant or having a healthy pregnancy if you still get frequent flare-ups. And like many other women with IBD, you may find that your disease has a negative effect on your sex life.
Specialized Treatment for Women with IBD
At the Fertility, Pregnancy and Sexual Function Program at the University of Chicago Medicine, our specialists have extensive experience helping women with IBD.
We have the expertise and resources to help you plan for a healthy pregnancy. We also understand the special concerns that you may have around your sexual health. If you are a woman with IBD, we’re here to help you at every stage of your life.
Inflammatory Bowel Disease and Fertility in Women
If you’re like many women with Crohn's disease or ulcerative colitis, you may be concerned about how your disease affects your ability to conceive. At UChicago Medicine, we can assist you with your family planning and help you get as healthy as possible before you get pregnant.
As soon as you are thinking about becoming pregnant, give us a call at 773-702-6140. We will arrange any tests you may need to ensure your IBD is in remission. We can also refer you to a maternal-fetal medicine specialist to help you plan for a healthy pregnancy. For the best outcomes, you should aim to be in stable remission (without flare-ups) for three to six months before getting pregnant.
If your IBD is in stable remission and you have not had surgery, you are just as likely to get pregnant as a woman without IBD. However, active inflammation from uncontrolled IBD may affect your ability to conceive. Having scar tissue from a prior surgery to create a J-pouch or an ostomy also can decrease your fertility.
Inflammatory Bowel Disease and Pregnancy
If you have Crohn's disease or ulcerative colitis, you can have a healthy pregnancy. Planning ahead and keeping your IBD in stable remission improves your chances of delivering a healthy baby.
At UChicago Medicine, our IBD specialists are available for pre-conception counseling to help you manage your medications so that you and your baby are as healthy as possible. During your pregnancy, we may refer you to a maternal-fetal medicine specialist, who is trained to manage pregnant patients with chronic conditions. We also can coordinate care with your primary obstetrician-gynecologist (OB/GYN) and develop a plan to monitor you during your pregnancy so that you and your baby have the best possible outcomes.
Whenever possible, it’s best to have a conversation with your IBD team before you become pregnant. We can order tests to make sure that you do not have any active inflammation, which could reduce your chances of a healthy pregnancy. We can also adjust medications that are part of your IBD treatment plan, if necessary.
For example, if you take methotrexate, it’s important to stop taking the immune-suppressing drug at least three months before conception. You also should gradually taper off any steroids like prednisone used to control inflammation before becoming pregnant. You also may need to add supplements like folic acid if you are on the anti-inflammatory drug sulfasalazine, which can affect your folate levels.
With a few specific exceptions like methotrexate and prednisone, most IBD medications are safe to take during pregnancy and while breastfeeding. Drugs considered safe during pregnancy include newer biologic medications like Remicade® (infliximab), Humira® (adalimumab), Stelara® (ustekinumab) and Entyvio® (vedolizumab).
Research studies have found that continuing these medications during pregnancy is not only safe for the baby but also helps maintain your health during pregnancy and beyond.
Do not stop taking your medication without talking to your gastroenterologist first.
If you are pregnant, we can help you come up with a plan that will keep your inflammation under control while protecting your baby.
If you have active inflammation during your pregnancy, you have a higher risk for delivering a premature or low birthweight baby. That is why it is important to stay on whatever IBD medications are recommended by your doctor so you can maintain remission.
With the right planning and coordination with your IBD team, you can have a healthy pregnancy and delivery.
Yes, in most cases, you can have a vaginal delivery. However, you may need a Caesarean section if you have a fistula, abscess or other sign of active perianal disease.
The risk of passing on ulcerative colitis or Crohn’s disease to your baby are fairly small—less than 3 percent if you have Crohn’s, and less than 2 percent if you have ulcerative colitis. That risk becomes much higher — 30 percent — if both you and your partner have IBD.
Inflammatory Bowel Disease and Sexual Health in Women
If you are like many women with IBD, you may find that your symptoms, medications or other issues related to your disease interfere with your sex life. But working with our team can help you enjoy this important part of your life again.
Surveys show that as many as 90 percent of IBD patients experience sexual dysfunction at some point.
If you’re a woman with IBD, many factors can contribute to your sexual problems. IBD symptoms like abdominal pain, fatigue and diarrhea are often to blame. Medications like steroids also can add to the problem. IBD also can cause your pelvic floor muscles to become very tight, making intercourse uncomfortable. IBD treatments like surgery and ostomies also can lead to anxiety, depression and a negative body image. All of these factors can affect your sex life and quality of life.
We understand that you may be reluctant to bring up your sexual health concerns with your gastroenterologist. But we’re here to help, just as we have helped many other women coping with IBD-related sexual issues.
At UChicago Medicine, we are sensitive to your concerns and can help you find relief from symptoms like pain and diarrhea that affect your sexual health. Our IBD specialists also can refer you to a gynecologist, GI psychologist or pelvic floor physical therapist for specific therapies designed to improve your sex life.
We offer a variety of specialized treatments to improve sexual health in women with IBD. These include:
- Biologics and non-biologic small molecule drugs, which can help you stay in remission
- Pelvic floor physical therapy, which can help you learn to relax or strengthen your core and pelvic floor muscles that could be affected by your IBD
- Cognitive-behavioral therapy, which is led by a GI psychologist who understands the mind-gut connection and has special training in helping women with IBD address mood-related issues and body image concerns
We believe that every woman experiences IBD differently. That is why we work with you to develop an individualized treatment approach so you can live the fullest life possible.
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