Inflammatory bowel disease includes Crohn’s disease and ulcerative colitis and is an autoimmune disease of the gastrointestinal tract that can present in ways that affect self-confidence, body image, sexual function, and libido. Patients are frequently not comfortable discussing this with their provider for a multitude of reasons - and LGBTQ+ IBD patients are even more reticent to discuss sexual health and identity with their gastroenterologist and IBD care team.

Living with Inflammatory Bowel Disease can be extremely challenging, posing barriers to social life, sexual functioning, and overall well-being. Discussing these topics with a provider you trust and are comfortable with is important to ensure you are being taken care of appropriately and your disease is managed properly – however, these are sometimes challenging topics to bring up. Discussing sex and sexual function is taboo in American society – for cisgender and heterosexual patients – and can be even more uncomfortable for LGBTQ+ patients to discuss these important subjects with their gastroenterology team.

IBD may have a significant impact on sexual quality of life – for example, some individuals may have disease activity located in the anus/rectum (perianal disease) or perianal swelling due to inflammation. It is also associated with erectile dysfunction risk and for individuals with natal female anatomy, arousal, lubrication, and sexual impulse – all of which are decreased in individuals with IBD. This is an acknowledged issue – but the likelihood of a patient telling their gastroenterologist at their 6 months checkup ‘Hey, doc, I have some decreased orgasm reaching capacity and erectile dysfunction – can we fix that?’ is very low – even lower if they are LGBTQ+ (1).

A recent study from Chedid, et. al (2), found that many IBD patients who identify as LGBTQ frequently seek online resources for information and help-seeking information from online sources (55%) and other LGBTQ+ individuals (42%) rather than asking their IBD care team. The reasons behind this are multifactorial - LGBTQ+ patients worry about experiencing mistreatment, discrimination, or judgment from healthcare providers when discussing topics tangential to sexuality and gender orientation or feel their care team isn’t knowledgeable about these concerns and issues (2).

This can be evident in online communities - LGBTQ+ IBD patients will post on community forums for Crohn’s Disease or Ulcerative Colitis asking questions about if they can ‘bottom’ (partake in anoreceptive intercourse, of the belief due to their IBD diagnosis they are now no longer allowed to partake in anoreceptive intercourse, and other questions about LGBTQ+ health with regards to IBD.* The common thread amongst all of these questions is LGBTQ+ IBD patients’ discomfort with talking to their care team about issues about gender and sexuality, and general misconceptions regarding safe practices.

LGBTQ+ patients frequently experience both implicit and explicit bias in healthcare settings and face many barriers to healthcare - from trouble finding a culturally competent healthcare provider, delaying care due to cost, to fear of disclosing gender identity or sexuality. For IBD patients, this can become problematic - particularly in active disease, or for those with extraintestinal manifestations who need close monitoring (3,4)

It is imperative recruitment and efforts to diversify IBD healthcare are emphasized – to ensure patients have access to providers they are comfortable seeing and speaking with. Patients are more likely to be comfortable discussing topics with a provider if they see themselves as similar to their provider, or have shared identities. The patient-physician relationship is strengthened when patients see themselves as similar to their physicians in personal beliefs, values, or communication. Similarity between patient and provider is also associated with increased trust, satisfaction, and adherence to the medical course of treatment (6). Having an LGBTQ+ physician can undoubtedly increase comfort and trust in LGBTQ+ IBD patient’s experience with their disease process.

As an LGBTQ+ person with IBD – this is a theme I am all too familiar with. Grappling with internal blame, disclosing to others and potential partners – something that has become normal for me, but taboo and misunderstood to most others unfamiliar with IBD. Competent care for LGBTQ+ people with IBD is a two-way street – providers have ignored the proverbial elephant in the room and simply not acknowledged my identity and the unique challenges it introduces, to the other end of the spectrum, being overtly discriminatory. Both undermine trust and feelings of comfort and safety in the healthcare setting, and both decrease the likelihood of patient retention, and overall, decrease quality of life. Providers may say they don’t have any LGBTQ+ patients so this does not apply to them– but this only shows that their LGBTQ+ patients are either not comfortable enough to ‘come out’ to them, or simply – LGBTQ+ patients avoid that practice. It may seem simple and small – but the act of wearing something like a small pride pin or ‘you are safe with me’ pin can radically change the patient-physician encounter for the better, allowing an LGBTQ+ patient to feel comfortable enough to speak about their concerns and health.

Everyone deserves to feel safe, comfortable, and welcome in the healthcare setting – LGBTQ+ patients with complex chronic conditions such as IBD are no exception.

Cass Condray is a student at the University of Oklahoma, studying microbiology. Cass founded Pride & Poop, an online resource and community for LGBTQ+ people with IBD.