IBD Care Throughout Adulthood

[00:30]

Hello, I’m Dr. Uma Mahadevan, and welcome to IBDIQ, part of The IBD Project by Takeda, where we’re coming together to help enhance expertise in IBD care—right from the start.

Thank you for joining me in this discussion on pregnancy and inflammatory bowel disease (or IBD). During this presentation, we’ll share potential concerns among women with Crohn’s disease (or CD) or ulcerative colitis (or UC) regarding family planning and the associated risks. We’ll also review guidance on IBD management and monitoring for pregnant women with IBD from preconception through lactation. We’ll conclude by discussing considerations for delivery and postpartum care.

[01:17]

For women with IBD, pregnancy care involves special considerations that may even impact their decision to become pregnant.^1,2

A UK-based study was conducted to gain insight into the potential impact of patient knowledge of IBD-related pregnancy issues on voluntary childlessness.² It assessed the survey results of 1,324 women with IBD aged 18 to 45 years who were members of the patient organization Crohn's and Colitis UK.

Results from the study showed that as many as 17% of female respondents with IBD were voluntarily childless.² For context, data from 2002 showed that approximately 6% of the general female population in the US were voluntarily childless.^1,3

Those women and others with IBD may choose to be childless due to misconceptions or concerns about how their disease could affect their pregnancy, the impact of pregnancy on their disease, fertility concerns, and infant outcomes, including the risk of passing on the disease to their offspring.^1,2,4

[02:25]

In my experience, when I discuss pregnancy concerns with my patients, they often ask the following 3 questions: Am I less fertile due to my condition?¹ Does my IBD, or the medications used to treat it, increase the risk of adverse pregnancy outcomes?¹ And/or: Will my baby inherit my IBD?¹

[02:43]

Let's address that first question and review some data regarding the impact of IBD on fertility.¹

A 2015 UK-based retrospective study compared the fertility rates of women with IBD to those without it.⁵ The study looked at the records of roughly 9,600 women with IBD and 2 million women without IBD in the UK’s Health Improvement Network database. Women from both cohorts were aged 15 to 44 years and registered with a general practice between 1990 and 2010.

The fertility rate among women with IBD was slightly lower than for women in the general population, mostly due to the marginally lower rates reported in women with Crohn’s disease.⁵ The rate among women with UC was similar to the general population. Fertility was indicated by the number of live births per 1,000 person-years, adjusted for maternal smoking and socioeconomic status.

[03:45]

The study found that fertility rates were lower in the 9-month period following an IBD flare compared to rates following periods without flares.⁵ Results also suggested that women with a history of IBD surgeries (that is, intestinal resection with or without an ileoanal pouch formed), had decreased fertility rates compared to women with IBD without such history.

Women with IBD are recommended to receive counseling on their fertility risks—particularly the impact of active disease.¹ Referral to a fertility specialist is also advised if pregnancy does not occur after 6 months of planned, timed attempts.

[04:25]

Let’s now discuss concerns about adverse pregnancy outcomes among women with IBD. In my experience, there is fear surrounding how IBD may impact both the mother and fetus during pregnancy.¹

As a result of this fear, patients may be concerned about continuing IBD medications through pregnancy and lactation.^1,6 However, before making any changes to their treatment regimen, a conversation between the patient and healthcare provider should occur.¹ Aligning together on a management plan may help improve disease activity perinatally and potentially optimize pregnancy and infant outcomes.

Women with IBD may experience adverse pregnancy outcomes, such as inadequate gestational weight gain, delivery of a small for gestational age infant, gestational diabetes, hypertensive complications, preterm delivery, venous thromboembolism (or VTE) during pregnancy or postpartum, and spontaneous abortion with moderate to severe disease activity.^1,7,8 Comparisons supporting these observations are between pregnant women with IBD and pregnant women without IBD, except for spontaneous abortion, which reflects pregnant women with moderate to severe disease activity compared to pregnant women with no or mild IBD.

[05:49]

I want to take a moment to further discuss the risk of inadequate gestational weight gain, as weight loss and inadequate nutrition may be associated with IBD.^1,8,9

In the Norwegian Mother and Child Cohort Study, the correlation between inadequate gestational weight gain and adverse pregnancy outcomes was assessed in mothers with IBD versus those without IBD.⁸ This prospective study assessed gestational weight gain in 166 women with Crohn’s disease, 217 women with UC, and more than 79,000 women without IBD enrolled in the broader cohort study from 1999 to 2008.

[06:32]

This study referenced the US Institute of Medicine’s (or IOM) recommendations for inadequate gestational weight gain in its analysis.⁸ Inadequate gestational weight gain was recorded when a patient’s weight gain was below the IOM cutoff value based on their prepregnancy body mass index (or BMI). For instance, women with an “underweight” BMI below 18.5 kilograms per meters squared before pregnancy were deemed to have “inadequate gestational weight gain” if they gained less than 12.5 kilograms throughout pregnancy.

Results showed that risk of inadequate gestational weight gain was approximately 2 and 1.5 times greater among women with Crohn’s disease and UC, respectively, than those without IBD.⁸ This was after adjusting for confounders such as smoking history, maternal age, diabetes, and hypertension.

The study also found that women with IBD and inadequate weight gain during pregnancy were nearly twice as likely to deliver a small for gestational age infant compared to women without IBD.⁸ Small for gestational age status refers to a birth weight below the tenth percentile for population-based birth weight, adjusted for sex and gestational age.

[07:53]

A systematic review and meta-analysis in women with IBD assessed the pooled influences of disease activity on pregnancy outcomes.¹⁰ The meta-analysis included screening and analysis of 28 eligible prospective and retrospective studies from 1952 to 2020 comparing pregnancy outcomes between women with active and inactive IBD. Definitions of “active” and “inactive” disease were based on disease activity criteria applied in the primary studies.

Among several outcomes studied, the analysis suggested that women with active IBD were approximately 2.4 times more likely to experience preterm delivery versus those with inactive disease.¹⁰ Spontaneous abortion was nearly 1.9 times more likely in this same patient population.

[08:49]

For clinical guidance in much of the following discussion, we’ll refer to the 2025 Global Consensus Statement on the Management of Pregnancy in Inflammatory Bowel Disease, which we will refer to as the Global Consensus recommendations. These recommendations, developed by the Pregnancy IBD and Neonatal Outcomes (or PIANO) Global Consensus Consortium, offer standardized evidence-based recommendations to providers caring for women with IBD, with specific considerations ranging from fertility to medical management during pregnancy, delivery, and the care of offspring in the first year of life.¹

The 2025 Global Consensus recommendations resulted from an international collaboration involving 39 IBD experts and 7 patient advocates from 6 continents who convened to review evidence and provide recommendations to providers caring for women with IBD.¹ Data were gathered through literature searches using MEDLINE from inception in 1971 through December 2023. Where possible, the Grading of Recommendations Assessment, Development and Evaluation (or GRADE) process was used to evaluate quality of the evidence reviewed. The Research and Development (or RAND) Method was used to combine available evidence with expert opinion where appropriate in formulating clinically relevant guidance.

[10:16]

So let's now turn to that third question I often hear from my patients: Will my baby inherit my IBD?¹

According to the Global Consensus recommendations, factors impacting pregnancy outcomes to be addressed in counseling include concerns about familial risk.¹ Children with first-degree relatives with IBD, compared to those without, may have an increased risk of developing IBD. Children born to a parent with Crohn’s disease may also have a higher risk of developing IBD than do children born to a parent with ulcerative colitis.

[10:52]

So let’s look at the risk of developing IBD in a retrospective study of Denmark’s Civil Registration System from 1977 to 2011.¹¹ From a sample of approximately 45,000 individuals with IBD, the study estimated the 10-year absolute risk of developing IBD, particularly if their mother or father had Crohn’s disease or UC, across groups aged from 20 to 40 years stratified at 5-year intervals.

Analysis estimated that the 10-year absolute risk of developing IBD when a parent had Crohn’s disease could range from approximately 0.3% to 2.2% across assessed age groups.¹¹ Across these same age groups, the 10-year absolute risk of developing IBD when a parent had UC could range from 0.2% to 1.2%.

While this study showed that children with first-degree relatives affected by Crohn’s disease or UC had incidence rate ratios of 7.8 and 4.1, respectively, versus those without an affected first-degree relative, the 10-year absolute risk of developing IBD when a parent has IBD, as we have just seen, remains relatively low, namely 0.3 to 2.2% for Crohn’s disease and 0.2-1.2% for UC.¹¹

[12:17]

Preconception counseling should be offered to all women of childbearing age with IBD, ideally at least 6 months prior to attempting conception, to address concerns regarding familial risk of IBD, assess disease activity, and plan IBD medication use through pregnancy.^1,4 Preconception counseling can also address general preconception concerns, including recommendations regarding smoking and other substance use, folic acid supplementation prior to conception, nutritional assessment, vaccination status, and others.¹ Patients should also be encouraged to communicate any news of pregnancy or plans to conceive. These early educational interactions may help reduce the negative effects of misunderstandings around IBD and pregnancy.

In addition to following care guidelines, preconception care for patients with IBD may improve IBD medication adherence, reduce disease activity during pregnancy, and lower the risk of low birth weight infants.¹

[13:23]

Now that we have discussed how patient preconception concerns may be addressed, let’s discuss recommendations related to the management of pregnant women with IBD.

Let’s look at management from a multidisciplinary care team. Before and throughout pregnancy, women with IBD may consult their gastroenterologist or IBD specialist.^1,12 Their role is to oversee IBD care and work with the obstetrician, who will manage pregnancy-related care. If available, preconception counseling with a maternal-fetal medicine obstetric specialist (or MFM) may be considered. Consultation with a colorectal surgeon is also advised, when relevant.

Gastroenterologist communication of the IBD treatment plan to other members of the patient’s care team is also recommended as part of preconception care.¹ Regular and effective communication between IBD and obstetric teams can facilitate optimal care and joint decision-making.¹²

[14:22]

This active management is particularly important, as the Global Consensus recommendations emphasize that all pregnancies in women with IBD should be managed as high risk, since obstetric complications can occur even in patients with quiescent disease.¹ As available, close monitoring of both the mother and fetus is advised. While the data evaluating the use of aspirin in pregnant patients with IBD are limited, the Global Consensus recommendations suggest the use of low-dose aspirin beginning by week 12 to 16 of pregnancy to reduce the risk of preterm preeclampsia.

Women with IBD who plan to become pregnant are advised to be up to date with their cervical cancer screening and recommended vaccinations before pregnancy.1 Patients on high-dose steroid, thiopurine, Janus kinase (or JAK) inhibitor, sphingosine-1-phosphate (or S1P) receptor modulator, and/or biologic therapy should avoid live attenuated vaccines.

As for all pregnant women, women with IBD are encouraged to cease activities such as smoking, consuming alcohol, and using opioids, cannabis, or other recreational drugs.^1,13

[15:44]

Now that we’ve covered guidance for healthcare maintenance before a woman with IBD becomes pregnant, let's discuss guidance on IBD medications from preconception through postpartum in greater depth.

With regard to such guidance, it’s important to keep in mind that randomized, controlled trials of investigational medications often exclude pregnant patients due to ethical concerns.¹ Prescribing information for individual medications is required to provide animal reprotoxicity data but often does not provide human pregnancy safety data. As a result, the Global Consensus recommendations relied heavily on observational data. 

As mentioned earlier, pregnant women with IBD may be concerned about continuing IBD medications through pregnancy and lactation.¹ However, stopping all medication is not usually recommended for women who are pregnant or attempting conception, as this may increase the risk of worsening disease activity, which has been associated with increased risk of maternal and fetal adverse outcomes. A counseling discussion between the patient and provider should occur before any change to therapeutic regimen is made.

[17:01]

When it comes to medication decisions, I keep the following points from the Global Consensus recommendations in mind for the preconception, pregnancy, and postpartum phases of a patient’s journey. 

To help reduce risk of active disease during pregnancy, the Global Consensus recommendations advise that preconception counseling should begin at diagnosis and medication safety in pregnancy be discussed with each change in therapy. Ideally remission should be achieved 3 to 6 months before considering conception.¹

Throughout pregnancy, the Global Consensus recommendations suggest that medication selection follow current guidelines and be made in conjunction with a detailed evaluation of maternal and fetal risks and benefits.¹

According to the Global Consensus recommendations, women with inflammatory bowel disease during preconception or who are pregnant and have active disease should start or optimize the same appropriate therapies as nonpregnant patients, except for methotrexate, which should be stopped at least 1 month prior to conception and avoided during pregnancy.¹ JAK inhibitors and S1P receptor modulators should also be stopped prior to conception and avoided during pregnancy unless there is no other viable option for maintaining maternal health.

Although data on the effect of some IBD-specific drugs on breastfed infants are limited, the Global Consensus recommendations also include breastfeeding and lactation considerations.¹ These recommendations note that most IBD medications available as of October 2025 are considered compatible with lactation, with the exception of methotrexate, S1P receptor modulators, and JAK inhibitors.

[18:52]

In summary, as guidelines and recommendations may evolve over time, please refer to the most recently published guidance on IBD management and individual product labels when considering IBD medication options for women with IBD during preconception planning, pregnancy, and breastfeeding.¹⁴

Beyond IBD specific medications, non-IBD specific medications for management of other pregnancy-related risks may be considered.¹

For example, the Global Consensus recommendations provide perspective on nutritional supplementation.¹ They note that women with IBD are at risk of developing malnutrition and micronutrient deficiencies—most commonly of iron, vitamins B₁₂ and D, and folic acid—and that these deficiencies may be worsened during pregnancy. They recommend that women with IBD be evaluated for micronutrient deficiencies during the preconception period and in the first trimester and treated with appropriate supplementation, if needed. 

Folic acid is universally recommended for women at least 4 weeks prior to conception to reduce the risk of neural tube defects and may also be supplemented at a higher dose in those with IBD, for example in those receiving certain medications; pregnant women at increased risk of folate deficiency should continue supplementation throughout pregnancy.¹ 

[20:19]

Now that we have gone over medical management options, let’s review key considerations when monitoring IBD disease activity in pregnant women.

According to the Global Consensus recommendations, pregnant women with obstructive symptoms or a disease flare may be considered for imaging, endoscopy, or surgery.¹

Visualization via lower gastrointestinal endoscopy is considered to be low risk for the mother and child during pregnancy, but it is only advised if results may change management.¹ The Global Consensus recommendations advise fetal monitoring during a full colonoscopy, endoscopy, or advanced procedures.

Most procedures performed in patients with IBD are flexible sigmoidoscopies, which carry lower risk because they can often be done without sedation or preparation.¹ Due to its low risk, intestinal ultrasound may also be an option for IBD monitoring during pregnancy when cross-sectional imaging is required, particularly in the first and second trimesters, when diagnostic accuracy is generally highest.¹

If cross-sectional imaging is needed during pregnancy, the Global Consensus recommendations advise that intestinal ultrasound or magnetic resonance imaging (or MRI) without gadolinium are both considered to be low risk and preferred over computed tomography (or CT) scan.¹ CT involves radiation; however, a single CT scan is below the level of radiation of concern for fetal development and may be considered if needed when no other source of imaging is available. Gadolinium, a potential teratogen, should be avoided, particularly in the first trimester.

[22:06]

It should be noted that serum biomarkers typically used to evaluate IBD activity are not likely to be reliable indicators of disease activity in pregnant women.¹⁵ This is because some biomarker parameters tend to increase during pregnancy (like C-reactive protein and erythrocyte sedimentation rate), while others, like hemoglobin and albumin, tend to decrease.¹⁵

However, based on the analysis of numerous studies, the Global Consensus recommendations suggest that fecal calprotectin may be used as a biomarker during pregnancy, as its levels correlate with IBD activity during pregnancy.^1,15,16

[22:45]

Now that we’ve reviewed potential methods for monitoring IBD disease activity in pregnant women, let’s discuss care considerations for this patient population during delivery and postpartum.

As noted by the Global Consensus, determining whether to deliver vaginally or via cesarean section is a shared decision-making endeavor involving the patient that takes into consideration various clinical factors.¹ Cesarean delivery may be advised when there is active perianal disease in women with Crohn’s disease, current or history of rectovaginal fistula in women with IBD, or a history of ileal pouch-anal anastomosis (or IPAA).¹

The Global Consensus recommendations also provide guidance on postdelivery care for the mother and infant.¹ The Global Consensus recommendations note that risk of venous thromboembolism (or VTE) may be increased in pregnant women with IBD compared with women without IBD.¹ VTE prophylaxis should be considered at delivery or postpartum if appropriate, particularly after cesarean delivery.

The Global Consensus recommendations also encourage that inactive vaccines be given to infants born to women with IBD on schedule according to current guidelines, regardless of in utero IBD medication exposure.¹ Children with in utero exposure to biologics may receive live vaccines according to standard CDC immunization schedules.

Due to the evolving nature of guidelines and consensus resources, be sure to refer to the latest when making patient care decisions.

[24:24]

Now that we have gone through the considerations for delivery and postpartum care, let's recap what we have discussed about IBD and pregnancy.

First, there are potential risks associated with pregnancy and IBD; however, concerns and misconceptions may be alleviated through patient education and preconception counseling.¹ Available guidance on IBD medication and monitoring for pregnant women with IBD may help in disease management from preconception through postpartum. Last, communication with the patient and consideration of various clinical factors can lead to medication adherence and a clear management plan for patients.

Thank you for your interest and for spending some time with IBDIQ today to help adapt to the evolving care needs of all patients with IBD.