Living with Inflammatory Bowel Disease (IBD) as an LGBTQ+ Person:
The Care You Need, The Care You Deserve – Findings from Our Community Survey
Creating Change for LGBTQ+ IBD Patients
At the Global Healthy Living Foundation, we recognize the unique health challenges faced by the LGBTQ+ community, including those living with IBD. That’s why we launched our “LGBTQ+ IBD experiences” survey centered on capturing and understanding your experiences.
Through the community voices from our survey, we uncovered insights on everything from confronting health disparities in IBD care to navigating inclusivity in health care settings. We hope that these findings can now help inform and educate both the community and health care professionals to ensure you receive better access to care and improved condition management. Check out the report now!
We look forward to creating more tailored resources for the LGBTQ+ IBD community based on these findings!
Demographics of Survey Participants
As you case see, our survey included a very diverse representation of over 245 participants from the LGBTQ+ community. It is important to us that our surveys are as representative as possible, and we are pleased that so many people of various age groups and identities took part. See the report for more.
Top 3 Most Affected Areas of Life for LGBTQ+ People with IBD
Our survey reveals that the top three areas most affected for LGBTQ+ individuals living with Inflammatory Bowel Disease (IBD) are physical well-being, sexual relationships, and mental well-being. These findings and many more help paint a picture of LGBTQ+ IBD patients’ experiences on, for example:
• living with the condition;
• seeking diagnosis; and,
• a navigating inclusivity in health care settings.
Discover the Insights from our LGBTQ+ IBD Survey!
We are excited to share the comprehensive findings from our recent survey of the LGBTQ+ community living with Inflammatory Bowel Disease (IBD). This report provides valuable insights into the unique challenges and experiences faced by LGBTQ+ individuals with IBD.
Download the full report to learn more about the results and learnings. We look forward to working on further improving care and support for this community.
Nearly
1 in 100
people in the United States live with IBD
Approximately
18,000
transgender and gender non-conforming individuals live with IBD in the United States
Only
14%
of gastroenterologists report routinely inquiring about sexual health for patients with IBD (a top concern among patients)
Less than
80%
of clinicians believe patients would be unwilling to provide their sexual orientation and gender identity when only 10% of patients would actually be unwilling to do so
Did you know?
Lesbians and gay men may use similar techniques for ‘coming out’ with IBD as they do when ‘coming out’ as lesbian or gay
What Is Inflammatory Bowel Disease (IBD)?
Inflammatory bowel disease (IBD) is an umbrella term for health conditions that cause inflammation of the digestive tract, causing such symptoms as diarrhea, abdominal pain, rectal bleeding, and weight loss.
The two types of inflammatory bowel disease include Crohn’s disease and ulcerative colitis. IBD is a chronic disease that can have a profound impact on your daily life and long-term health.
Hear from People Like You
Patient stories are an impactful way to highlight the real, lived experiences of LGBTQ+ individuals with IBD. We hope that stories like this one can offer insight into how others in the LGBTQ+ community navigate life with IBD and overcome any health disparities to get the care they need and deserve. Join us on this journey of learning, sharing, and promoting better health in the LGBTQ+ community.
Navigating IBD and LGBTQ+ Identity:
Krys Baxter’s Diagnosis Journey
I remember walking out and being like, oh my gosh, I have an answer. I know what’s wrong with me. Not to hurt, not to have to rush to the bathroom, or constantly have puke bags with me all the time.”
Additional Resources
Learn more about IBD, health disparities,
and how we are working to help people put themselves at the center of their care.
Ensuring Equity in Inflammatory Bowel Disease (IBD) Care for LGBTQ+ people
Exploring the unique challenges faced by LGBTQ+ people with IBD and ways to create more equitable, inclusive health care environments for better health outcomes.
Inflammatory Bowel Disease Patient Guidelines and Articles
We believe that the more you know about your condition, the better you can manage it.
Ulcerative Colitis Patient Guidelines
Our Ulcerative Colitis Patient Guidelines are designed to help you get what you want, need, and deserve from your UC treatment journey.
Crohn’s Disease Patient Guidelines
Our Crohn’s Disease Patient Guidelines are designed to help you get what you want, need, and deserve from your CD treatment journey. This will be updated and expanded regularly as new research, information, and treatments for Crohn’s disease become available.
Why LGBTQ+ Representation Matters to Me: Celebrating Diversity and Inclusion in Health Care
Hear firsthand from members of our chronic illness community about the vital importance of representation for the LGBTQ+ community in achieving health equity.
Crohn’s and Colitis Awareness Week with Pharmacist Mallory Schmoll
Listen to a special episode of The Health Advocates Podcast to learn all about inflammatory bowel disease (IBD) with guest pharmacist Mallory Schmoll.
Thank you to our partners!
This initiative was made possible with support from BMS
We are grateful for our partnership with organizations around the U.S. who are helping us to spread the word about the experiences of LGBTQ+ people living with IBD. Together, we can ensure disparities are addressed and dismantled so every person can benefit from equitable health care.
Supporting, educating, and engaging people on the importance of addressing health disparities
that LGBTQ+ people living with IBD can face.
Haider, A et al. “Emergency Department Query for Patient-Centered Approaches to Sexual Orientation and Gender Identity: The EQUALITY Study.” JAMA Internal Medicine. June 1, 2017): doi: https://doi.org/10.1001/jamainternmed.2017.0906.
Crohn’s & Colitis Foundation. “Groundbreaking Study Led by the Crohn’s & Colitis Foundation Estimates Nearly 1 in 100 Americans Has Inflammatory Bowel Disease (IBD).” July 20, 2023. https://www.crohnscolitisfoundation.org/groundbreaking-study-led-the-crohns-colitis-foundation-estimates-nearly-1-100-americans-has.
Crohn’s & Colitis UK. “The needs of gay and lesbian people with IBD.” https://crohnsandcolitis.org.uk/our-work/research-and-evidence/projects-we-have-funded/the-needs-of-gay-and-lesbian-people-with-ibd.
Crohn’s & Colitis Foundation. “Recognizing the needs of LGBTQ+ IBD patients during Pride Month.” June 9, 2022. https://www.crohnscolitisfoundation.org/blog/recognizing-the-needs-of-lgbtq-ibd-patients-during-pride-month.
Vélez, C, et al. “Digestive Health in Sexual and Gender Minority Populations.” American Journal of Gastroenterology. June 2022: doi: https://doi.org/10.14309/ajg.0000000000001804.
Mansoor, E, et al. “Epidemiology of Inflammatory Bowel Disease in Men with High-Risk Homosexual Activity.” Gut 72. doi: https://doi.org/10.1136/gutjnl-2022-328218.
Schenker, B, et al. “Recommendations for Transgender and Gender Nonconforming Adolescents and Young Adults With Inflammatory Bowel Disease.” Journal of Pediatric Gastroenterology & Nutrition. doi: https://doi.org/10.1097/MPG.0000000000003027.