The IBD and Family Program
Supporting Patients on the Journey to Parenthood
Like many medical innovations, the IBD and Family Program started with a patient. Specifically a patient that Sarah Streett, MD, clinical associate professor of gastroenterology and hepatology and director of the IBD program and Aarti Rao, MD, a GI fellow, shared—a pregnant, hospitalized woman with complicated inflammatory bowel disease (IBD, made up of ulcerative colitis and Crohn’s disease) who had previously undergone multiple colorectal surgeries.
Rao, then a first-year fellow, was “struck by how unique the struggle was and inspired by this patient’s strength and determination” and both she and Streett, who describes the program as “a passion project,” along with colleagues across disciplines at Stanford, decided to tackle this problem using a multidisciplinary approach.
The result is the IBD and Family Program, launched in 2018, which focuses specifically on IBD and reproductive health and how best to help patients, providers, and the larger community. Pregnancy is “both an exciting and dynamic time, made even more challenging for people with IBD who need to manage a chronic illness,” Rao explains, and the question was: “How do we best support these patients and optimize health to enable them to enjoy the journey of parenthood?”
As a multidisciplinary collaboration between the Division of Gastroenterology and the Johnson Center for Pregnancy and Newborn Services, the IBD and Family Program seeks to improve clinical care for people dealing with IBD and reproductive health issues with state-of -the-art treatment, education, and research. As Streett explains, the peak onset of IBD is ages 15-30, when many young people are starting to think about their “developing adult lives.” And making major life decisions like pregnancy and parenthood can be more complicated in patients with IBD (both men and women). “There's a lot of understandable concern,” Streett explains. “Patients worry: Are medications safe? What will happen to the course of my disease if I do get pregnant? Am I as a parent (of either sex) able to manage a baby when I already have a chronic disease? Am I going to pass this on to my child?”
"There's a lot of understandable concern. Patients worry: Are medications safe? What will happen to the course of my disease if I do get pregnant? Am I going to pass this on to my child?
These concerns are “significant,” says Streett. There’s a higher rate of voluntary childlessness in people with IBD. Voluntary childlessness “is an important decision,” as Streett acknowledges, which “needs to be based on accurate information. We want people to be empowered.” A survey done at the IBD clinic showed a great deal of misinformation within the IBD patient community about the effects the disease has on pregnancy. As it turns out, the risk of passing IBD on to a child is low, particularly if only one parent has it, and medication optimization and adherence along with nutrition can help manage IBD before, during, and after pregnancy.
To that end, the program connected gastroenterologist IBD experts with high-risk obstetricians and reproductive endocrinology and infertility specialists from the Johnson Center for Pregnancy and Newborn Services, including Tiffany Herrero, MD, clinical assistant professor of obstetrics and gynecology, and Lusine Aghajanova, MD, PhD, assistant clinical professor of reproductive endocrinology and infertility. The result is a multidisciplinary collaboration that allows physicians to come together to formulate the best way to help a patient with these issues: “The program is designed in a flexible way so that whatever the needs of the patient are, we can accommodate them,” Streett adds. Patients travel far, sometimes even from out of state, to seek care at the IBD clinic, and now they can coordinate that with either local OB care or Stanford OB care. Ideally, doctors can see a patient during the pre-conception phase to optimize their health and therapy, and then during pregnancy and in the postpartum period.
The program currently consists of three attendings, two fellows, a GI dietician, a GI nurse, a physician’s assistant who’s currently joining the team, a patient care coordinator, a pharmacist, and a clinical research coordinator. Many of the program’s staff are located in the Redwood City GI clinic, with the high-risk OB program at the Lucile Packard Children’s Hospital.
The overarching goal of the program is simple: Streett and the other doctors are motivated to “to partner together to help patients understand that this disease doesn’t have to determine their life plans.” To that end they have specific goals in three areas: optimizing clinical care, improving patient and provider education, and researching interesting questions about the dynamic interactions of pregnancy and IBD.”
They have just begun enrollment in a collaborative study called Pregnancy in IBD and the Microbiome at Stanford (PIMS), which explores how the immune system and the microbiome are affected by pregnancy in IBD patients. This project is a collaboration with both the labs of David Relman, MD, Thomas C. and Joan M. Merigan professor in medicine, and professor of microbiology and immunology, and Brice Gaudillaire, assistant professor of anesthesiology, whose innovative contributions have contributed to an understanding of characteristics of healthy pregnancies and adverse outcomes such as pre-term birth. “Stanford is a place of phenomenal innovation and research and we are excited to apply the basic science exploration to focus on essential clinical questions to improve outcomes for pregnancy outcomes in people with IBD,” Streett says.
Rao and Streett emphasized that the project has been deeply rewarding. “I'm inspired every day by the resiliency of the people we care for who charge forward despite living with a chronic disease that currently has no known cure,” Streett says. “And they accomplish amazing things. I’m motivated by our patients’ determination to define their own lives.”
To learn more, visit the Stanford IBD and Family program website.