Family planning in IBD: ‘It is our responsibility’ to share accurate resources, support
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A young woman, newly diagnosed with inflammatory bowel disease, sits in your office.
Although she is relieved to finally have a diagnosis and a plan to treat her terrifying gastrointestinal symptoms, everything about her future now seems uncertain, including her plans to become a parent. “What ifs” and catastrophic scenarios race through her mind: She’ll never be able to conceive, the medications she’ll require to keep her IBD in remission will be toxic to a fetus, her partner will leave her, the sleep deprivation so common during the postpartum period will trigger another flare.
Surely, this scenario is familiar to any health care provider who cares for young women with IBD, including ulcerative colitis and Crohn’s disease, as these illnesses are most commonly diagnosed before or during a woman’s reproductive peak. Common fears relate to the impact of IBD symptoms and treatment on their fertility, pregnancy outcomes and children’s health, as well as to the impact pregnancy may have on their own mental and physical health.
Fortunately, women’s fears do not match the reality that with proper planning and care, pregnancy is possible and safe for most women with IBD. But unfortunately, these fears are powerful and persistent, maintained by a lack of knowledge about pregnancy and IBD. Fear and misinformation can have significant negative consequences, driving some women to cease taking helpful medications, putting others at risk for complications if they become pregnant at an inopportune time or leading some to give up their plans to start a family without awareness of all the available options.
Considerable effort has gone into rectifying this problem, both for clinicians and patients. In the past several years, expert working groups from the U.S., U.K., Canada and Europe have issued straightforward, best-practice guidelines for the management of IBD from preconception through the postpartum period, calling for collaboration between gastroenterologists, generalist OB-GYNs, maternal fetal medicine (high-risk obstetrics) physicians and other specialists, including mental health providers and dietitians.
The AGA has distilled these guidelines down and published them online, along with plentiful “myths vs. facts,” for patients in the My IBD Life Parenthood Project website.
Recommendations for pregnant women with IBD
In general, it is recommended that prior to conception women with IBD be in remission for 3 to 6 months, as active disease is associated with an increased risk for preterm birth, low gestational weight and miscarriage. They also should abstain from potentially teratogenic medications, such as methotrexate and tofacitinib, or experimental medications for 6 or 9 months, respectively.
Regarding birth planning, IBD need not influence decision-making about mode of birth for most women with quiescent disease. However, it is essential to consider each case individually as certain features of IBD are absolute contraindications, such as active perianal CD, or relative ones, like a history of ileal pouch-anal anastomosis (IPAA) surgery, to attempting a vaginal birth, and a cesarean section should be planned instead.
With the exception of the aforementioned medications, the risks for both a woman and her fetus or newborn of a flare resulting from discontinuing medication before or during pregnancy far outweighs the risk of the medication itself.
As in women without IBD, contraception can help women plan and time their pregnancies, though studies show that women with IBD, particularly those with a history of surgery or biologic drug use, use contraception at lower rates than women without IBD, putting them at higher risk for unplanned pregnancy and complications. The CDC has published guidelines on the safety of specific contraceptive methods for patients with IBD, and women of reproductive age should be counseled regarding the importance of contraception.
Reproductive capability, considerations
IBD itself has a limited impact on women’s physical reproductive potential. Research has demonstrated that infertility rates in women with IBD, who are in remission and have no history of surgery, are similar to those for women without IBD — a prevalence of around 7% to 12% in the general U.S. population, according to a CDC report — and there is no evidence that medications for IBD affect fertility.
However, prior abdominal surgery, such as IPAA or ostomy, does raise the risk for infertility due to scarring and adhesions affecting the fallopian tubes, though advances in minimally invasive surgical approaches reduce this risk. At the same time, women with IBD have higher rates of “voluntary childlessness,” —14% to 36% vs. 7.6% in the general population, according to a systematic review published in Alimentary Pharmacology & Therapeutics — or opting not to have children. This decision can be attributed to several factors, including disease activity, IBD’s effects on body image and interest in sex, fears of pregnancy worsening IBD, passing IBD to offspring or having difficulty caring for children due to IBD symptoms.
However, given the prevalence of inadequate or misinformation about IBD and reproductive health, for many women with IBD, this “choice” may not necessarily be an informed one. Research studies demonstrate that when women receive adequate education and counseling, fears about pregnancy and parenting are diminished, enabling them to make truly informed decisions about their reproductive futures.
Specialized referral
Women with IBD should be referred to a reproductive endocrinologist on an individualized basis — taking into account age, disease type and surgery history — for evaluation and consideration of using assisted reproductive technologies (ARTs) such as in-vitro fertilization.
ARTs are both safe and effective overall for women with IBD, with pregnancy and live birth rates for women with medically-managed UC and CD similar to the general population using ARTs. However, ARTs may be less effective, with lower chances of a live birth, for women with CD in general, CD with prior surgery and anyone with IBD with a failed IPAA.
Women with IBD and infertility who desire to become a parent should be adequately counseled about expectations of ARTs as well as alternative paths to parenthood, including use of donor gametes, gestational surrogacy and adoption. Should they decide not to pursue parenthood, they should be supported in grieving losses and navigating the transition from becoming childless to childfree.
Additional support, coping strategies
Regardless of the outcome, navigating IBD care, family planning and reproductive decisions, fertility treatment, pregnancy and new parenthood can be stressful and unpredictable, often leaving women and their partners feeling out of control, and at worst, traumatized.
Outside of the reproductive context, IBD is associated with high rates of anxiety and depression. In the reproductive setting, infertility and its treatment are both associated with high levels of emotional distress, and the perinatal period — from conception to the first year after birth — puts women at increased risk of mood and anxiety disorders. Recent research in Gut suggests a compounding effect of these stressors, finding that women with IBD are at higher risk for developing mood and anxiety disorders in the postpartum period than women without IBD.
Thus, women with IBD in the reproductive period may benefit from bolstering their coping repertoire to help mitigate these risks. Although there are no interventions designed specifically for this population, there is excellent research support for psychotherapies in each individual group, and there are “common ingredients” in many stress management and psychotherapeutic approaches that are relevant to the combined IBD and family planning journey.
Given the unpredictable course of both IBD and family planning, a combination of coping strategies should be promoted: problem-focused coping, which alleviates stress by taking action to resolve the original source of the stress if it is within a person’s control, and emotion-focused coping, which alleviates stress by managing emotional responses when the source of stress is outside of a person’s control.
Specific techniques may include exercises that counteract the body’s stress response, such as deep breathing and guided imagery; practices geared toward accepting difficult emotions, such as mindful acceptance; and cognitive tools that help balance and unhook from worries and strengthen one’s sense of self-efficacy, such as scheduled worrying, cognitive restructuring and diffusion, and developing a coping script.
Finally, women with IBD in the reproductive years shouldn’t have to go at it alone. Nurturing relationships and strong social connectedness and social support, whether in the context of a romantic relationship, friendship, family or support group, are strong buffers against stress and the emergence of psychiatric illness across contexts.
It is our responsibility as multidisciplinary health care providers who treat young women with IBD to work to share accurate information, resources and support.
IBD and family planning may share unpredictable courses, but together we can ensure that our patients, and not their “what ifs,” determine their own paths forward.
References:
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For more information:
Katrina S. Hacker, PhD, is a clinical psychologist at Dartmouth Hitchcock Medical Center and Clinics and assistant professor of psychiatry at Geisel School of Medicine. She can be reached at katrina.s.hacker@hitchcock.org.
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