Unanswered Questions Loom Over Gender-Affirming Hormone Therapy for Transgender Patients with IBD

A growing body of evidence suggests that inflammatory bowel disease (search)Search disease is equally prevalent in transgender and cisgender populations, yet major knowledge gaps remain around how gender-affirming hormone therapy may affect Crohn's disease (search)Search disease and ulcerative colitis (search)Search disease. As political pressure threatens access to gender-affirming care, clinicians and researchers are calling for urgent attention to both the clinical and psychosocial dimensions of IBD care for transgender patients.

In a Healio video exclusive, Edward V. Loftus Jr., MD, the Maxine and Jack Zarrow Family Professor of Gastroenterology at Mayo ClinicView company profile and chief medical editor of Healio Gastroenterology, underscored the uncertainty facing the field. "There are a lot of unanswered questions in this field," Loftus said. "We have some data that gender-affirming hormone therapy doesn't appear to increase the risk of IBD flares in transgender individuals."

Key findings from the 2023 multicenter study

The most robust evidence to date comes from a 2023 retrospective multicenter study published in Clinical Gastroenterology and Hepatology, led by Victor Chedid, MD, MS, and Kira Newman, MD, PhD. The investigators found no overall increase in IBD flares in the first year after patients started gender-affirming hormone therapy — a result Chedid described as "a reassuring finding for providers and patients."

However, the study revealed one crucial caveat: patients with IBD who began hormone therapy with active disease or ongoing inflammation were more likely to experience a flare in the year that followed. "That speaks to the importance of including an IBD provider in the gender-affirming care of a patient," Chedid said, "because at the time of initiation of gender-affirming care — especially gender-affirming hormones — it will be important to get the IBD in deep remission to reduce the risk of flaring."

Chedid recommends that clinicians be proactive and "consider noninvasive monitoring within the first 3 months of initiating hormones with stool-based testing, such as fecal calprotectin, and again at 6 months and 1 year."

Venous thromboembolism: an overlapping risk

Clinicians should also consider the risk for venous thromboembolism in patients with IBD receiving hormone therapy. Oral estradiolView drug details is known to increase VTE risk, which may be particularly relevant for patients with IBD, who are already at two- to threefold greater risk for VTE than the general population.

Laura Targownik, MD, clinician researcher at Mount Sinai Hospital in Toronto and president of Rainbows in Gastro (search)Search term, noted that there are still questions about how those two risk factors for VTE interact, particularly when a third risk factor — such as hospitalization — is added. In those specific cases, Targownik said she believes temporarily pausing therapy could be a consideration to lower the risk for DVT.

Loftus echoed this concern: "There is the question remaining about thromboembolism risk that needs to be further addressed. There might be a role for temporarily stopping such therapy in patients with severe inflammation or hospitalization."

Avoiding assumptions: 'transgender broken arm syndrome'

Alexander Michael Goldowsky, MD, attending gastroenterologist at Beth Israel Deaconess Medical Center and assistant professor at Harvard Medical School, cautions clinicians about "transgender broken arm syndrome," a phenomenon where any condition a transgender individual is experiencing is blamed on their GAHT. Goldowsky advises clinicians to avoid making assumptions and automatically attributing concerns to gender-affirming care, particularly when so little is known about the relationship between GAHT and gut health.

"I'm going to use the tools in my toolbox as a gastroenterologist to treat whatever symptoms [they're] having, because we know that folks who take GAHT do better overall, particularly from a mental health perspective," Goldowsky said.

Newman also highlighted the importance of recognizing that GAHT is not one monolithic treatment. "If there is a liver-related injury we think is related to medication, [we should] assess all of a patient's medications, including their GAHT," she said. Clinicians should also be aware that GAHT differs in dosage and duration of action, and should confirm patients are obtaining GAHT from a licensed practitioner.

Surgical considerations and multidisciplinary collaboration

Not all concerns surrounding IBD and gender-affirming care are specific to hormone therapy. Targownik noted that for patients with IBD considering surgical interventions, "there may be issues that come up in terms of feasibility or anatomic considerations, particularly for patients with rectal involvement of their IBD or perianal fistulas."

Goldowsky emphasized that such decisions require a multidisciplinary approach: "It's a multidisciplinary conversation — involving obstetrics and gynecology, colorectal surgery and plastic surgery — to come up with the best decision."

Building a welcoming practice and inclusive endoscopy suite

Given that patients with IBD often undergo more endoscopic procedures than those without the disease, creating an inclusive environment is critical. Targownik noted that "there are special considerations for people who have dysphoria related to their genital conformation and who may be triggered by having to expose parts of their body that are discordant with their gender identity."

Chedid described practical steps at his clinic: "We have patients go into a locker room to change before their procedures. We have options for patients to change in a male locker room, a female locker room, and a nongendered or gender-neutral space."

Newman recommends calling patients using a pager that gets buzzed to avoid concerns about not knowing a patient's preferred name or pronouns, and advocates for medical record systems that allow people to include pronouns, chosen name, gender, and sex-assigned at birth. "When institutions can track and record things over time, [patients] don't have to reintroduce themselves every time they meet a new provider," she said.

Targownik emphasized the importance of transparency during procedures: "For instance, during a colonoscopy, I'm going to make it clear to the patient that I do not need to directly expose their genitals in order to perform the procedure."

The psychosocial burden and the path forward

Chedid advocates for a holistic approach to gastroenterology care that considers a patient's social and mental health. "Patients who are from the transgender and gender-diverse community may have a dual burden on their health care because they are managing chronic GI conditions, like IBD, as well as identity-related stressors," he said. "This can amplify psychosocial strain and can impact care engagement."

"There is an urgent need to close many gaps in literature," Chedid said. "More data and guidelines will help us better care for patients from the LGBTQ+ community, including transgender and gender-diverse populations who are living with inflammatory bowel disease (search)Search disease."

Loftus concluded with a broader message about the importance of inclusive care: "Many patients who are transgender have had unpleasant experiences in the health care system so anything that we can do that says, 'we welcome all people' is a good thing."