Bowel Moments
Real talk about the realities of IBD...On the rocks! Hosts Robin and Alicia interview people living with Crohn's disease, ulcerative colitis, or indeterminate colitis (collectively knows as Inflammatory Bowel Diseases or IBD) and the medical providers who care for our community. Join us to meet people affected by IBD- we laugh, we cry, we learn new things, we hear inspiring stories, and we share a drink.
Bowel Moments
LGBTQ+ Inclusive IBD Care with Dr. Victor Chedid
Imagine visiting your gastroenterologist and feeling comfortable enough to discuss every aspect of how IBD affects your life—including your sexual health and practices. For many patients, particularly those in the LGBTQI+ community, this remains an elusive dream rather than reality.
Dr. Victor Chedid, gastroenterologist and director of Mayo Clinic's Pride Clinic, joins Bowel Moments to tackle this crucial gap in IBD care. With disarming honesty and clinical expertise, he reveals why addressing sexuality isn't just about inclusivity—it's about providing complete medical care. When 95% of providers believe discussing sexual health is important but only 27% actually do it, patients suffer in silence with questions that directly impact their quality of life.
The conversation dives deep into practical approaches for both patients and providers. Dr. Chedid shares his framework for discussing sexual practices with patients, from the straightforward question "What do you do for sex?" to navigating complex conversations around surgical interventions like J-pouch formation. For transgender patients, he unpacks recent research on gender-affirming hormones and IBD, emphasizing that life-saving gender-affirming care should never be withheld due to IBD concerns.
Perhaps most compelling is Dr. Chedid's perspective on cultural humility and intersectionality. Each patient's experience is shaped by multiple overlapping identities—their sexuality, gender, race, nationality, and more. Rather than making assumptions, he advocates for providers to "leave their biases at the door" and approach each person's unique situation with curiosity and respect.
"People living with IBD are the experts of their own bodies," Dr. Chedid reminds us in his powerful closing thoughts. "When they say something feels off, it's not a guess—it's lived experience." This principle forms the foundation of truly inclusive care—care that sees patients as whole people deserving of dignity, understanding, and comprehensive treatment.
Ready to advocate for more inclusive IBD care? Share this episode with your healthcare team and join the conversation about creating safe spaces for everyone in our community.
Links:
- AGA's Pride Month Provider Spotlight on Dr. Chedid
- Dr. Chedid talking about forming the IBD Pride Clinic
- "Your Top 6 Questions Answered by Dr. Victor Chedid" -A Program Dedicated to IBD Patients from the LGBTQIA+ Community- Crohn's & Colitis Foundation- USA
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Hi, I'm Alicia and I'm Robin, and you're listening to Bowel Moments, the podcast sharing real talk about the realities of IBD Serve on the rocks. This week, robin and I had the great pleasure of talking to Dr Victor Shadeed. Dr Shadeed is a gastroenterologist and associate professor at the Mayo Clinic in Rochester, minnesota. He's also the director of their Pride Clinic and has a special interest in researching health disparities in inflammatory bowel disease, particular to the LGBTQI plus community. We had a really, really great conversation with him, talking all about inclusive care of individuals part of the LGBTQI plus community and also a lot about how doctors can get comfortable talking to their patients around their sexuality. So just a fair warning to everybody that we do get in depth and talk about sexual practices in this episode, so it may not be appropriate for everybody, but we think you'll find this conversation just as fascinating as we did and we hope you'll get as much from it as we did. Cheers.
Speaker 2:Hi everybody, Welcome to Bowel Moments. This is Robin.
Speaker 1:Hello everyone, this is Alicia and we are absolutely delighted to be joined by Dr Victor Shadeed. Dr Shadeed, welcome to the show. We are really excited to hear all about you and your work, but our first, very unprofessional question is what are you drinking?
Speaker 3:Well, hi, robin and Alicia, I'm so happy to be here and I'm still at work, so it is a boring iced coffee and the ice has melted, so I'll continue drinking it, and it's still cold, so that's good.
Speaker 1:It's just watery coffee now, unfortunately.
Speaker 3:It's watery coffee now Still does the job, though.
Speaker 1:I hope so, Robin, you're probably drinking coffee too. You're a big coffee in the afternoon woman as well.
Speaker 2:I am. I debated on getting a fresh cup but I'm actually drinking flavored sparkling water on Topo Chico. But I have a lime and mint Topo Chico.
Speaker 3:Oh, I've been wanting to try those yeah.
Speaker 1:They're good. We're big fans of Topo Chico. However, Robin, I could have sworn that last time we talked, you made a comment about not drinking as many bubbles.
Speaker 2:Yes, that is true, and I will regret this later. That is true.
Speaker 1:Robin's day. Pouches doesn't love the bubbles, unfortunately.
Speaker 2:No, well, I think it was the SIBO that didn't like the bubbles, and then it was. I took antibiotics and I was better and now I feel like probably coming back. I probably will be messaging my doctor after the show actually, so like, hey, I think the SIBO is back, but I really. They're delicious and it's worth it. It's just one day, it's just one bubbly beverage.
Speaker 3:Hey, you deserve the joy of one bubbly beverage. I would give that to you.
Speaker 1:Yes, that's right Doctors orders Robin. Joy of one bubbly beverage. I would give that to you.
Speaker 2:Doctor's orders Robin.
Speaker 1:I like it. What about you? Dr Chidi is not providing medical advice. This is not what's happening on the show?
Speaker 3:Absolutely not. We're here as friends having coffee.
Speaker 1:I love that. That's perfect. Well, I am also drinking bubbly water as well, robin, but I've got a San Pellegrino Essenza and this is their kind of their Topo Chico-ish. This one is blood orange and black raspberry. It's nice, it's nice. Why are bubbles bad with SIBO?
Speaker 3:So it's more about the bubbles causing bloating, and when you drink more bubbles you're going to have more bloating and SIBO gives you symptoms of bloating. So when somebody has SIBO and the bubbles won't cause SIBO but would just make your bloating worse, and so many a times when I see a patient with isolated bloating we can't identify other causes of their bloating. Part of the lifestyle modifications that we discuss and part of the plan that we discuss is to avoid bubbly drinks, to avoid sipping out of a straw and to avoid gulping. So these are all little tricks that you would do to help just reduce the symptom of bloating, which sometimes is one of the most difficult GI symptoms to treat, as maybe Robin can attest.
Speaker 2:And my bloating is painful. Not everybody has painful bloating but mine is very painful.
Speaker 3:I'm sorry.
Speaker 1:The next official question for you is tell us your IBD story. What brought you into our community? What made you decide to become a GI doctor?
Speaker 3:So I go back to when I was in medical school at the American University of Beirut in Lebanon. That is where I grew up. Also, I know that a ton of people all around me one of their first things that they share whenever they know I'm a doctor is GI symptoms. It's like right away you meet the person and GI symptoms is their first thing they want to discuss with you. Even when I was a medical student that was what people would want to discuss and I used to like find it intriguing, because all of us eat, all of us experience a lot of variations of GI symptoms, a huge array of it, and everybody in our lifetime has had one or another GI symptoms at different, varying degrees, different severities, different frequencies and all that. So there's that. So I got intrigued by the physiology of the gastrointestinal tract and studying that in med school. And then as I progressed and went to the end of med school, trying to decide what specialties I want to go to, I knew that I am somebody who loves to do procedures but also loves to take care of a patient holistically in clinic. So with that it was a sort of in-between for me in my mind between gynecology and obstetrics or gastroenterology or internal medicine and then gastroenterology. So I actually went through the process of applying for obstetrics and gynecology. I thought I have it in me to be that person, and then I did all my application for obstetrics and gynecology. I thought I have it in me to be that person and then I did all my application for obstetrics and gynecology, went through sub-internships as part of my training in OB-GYN here in the United States. So I traveled from Lebanon for med school.
Speaker 3:I did a couple of months here in the United States observing and working with OB-GYNs and at the same time was applying for that residency training and I could not see myself in it. I hated it. I felt that this is not the right fit for me. So I actually withdrew from the OB-GYN application process and the match and I pivoted my entire career towards internal medicine, knowing that I want to then proceed to gastroenterology. So then an opportunity came up where I got an award to go to Johns Hopkins University to do research and over there I was mentored by an amazing mentor whose name is John Clark. He mentored me on a lot of research approaches for motility disorders and I thought that was really intriguing and interesting. And then I moved on for residency to the University of Pittsburgh and the University of Pittsburgh was well known as an IBD center. At the time I was there, there were great people in IBD there Dr David Binion, dr Miguel Ruguero, dr Jana Hashash so all these folks. I was still a little intern resident in internal medicine and my eyes were excited about all the work that they've been doing and I started working on research with them.
Speaker 3:My research was focused on psychiatric elements related to IBD. I looked at depression, anxiety. I looked at suicidality in that population and that broke my heart, recognizing that IBD folks are folks who are diagnosed at a younger age. It was people who are my age, going through all these different life milestones and transitions as they're navigating a chronic illness at a young age, and I saw the resilience in this population. I saw how they are all excellent, excelling in their life despite this big burden that has been put on them, and I felt that this is my calling and that's where I moved on to GI fellowship at Mayo Clinic and knew that I want to pursue IBD. I also did research in motility and IBD and then I moved on as I joined staff at Mayo Clinic to look at more health disparities and health equity in the IBD community, particularly in the LGBT community.
Speaker 1:So that's where I am now how beautiful that story was, though I love that this is the career that spoke to you. I mean, that's really wonderful to hear.
Speaker 3:Yeah, it remains to be a mystery in many ways of things that we don't know about different aspects of how we treat IBD, how it manifests, the different layers of it that we're still all peeling and trying to figure out together. I love the community we have in the IBD world, where it's a community that is involving not just the MD and that's it. In fact, I learn more from my patients, I learn more from patient advocates than I would learn from a colleague many a times. I learn more from having conversations and there are so many nuances that it's not done in one way and that's it. There are so many different ways that approaching so many different aspects of IBD care and it's such a rewarding and privilege to be part of that village or part of that community advancing care together. So I love that part.
Speaker 1:And we love that. You love it because I think having providers like you who really like take that approach to it and really feel that deeply about the patient community, I think is really, really important. I mean, you're the type of doctors that I think make a difference in the care and work passionately to make sure that we're trying to figure out how do we really treat people well while they're coping with this, while also trying to figure out, you know, what's the cause and how do we cure this. So I think that makes me happy to hear Thank you.
Speaker 1:I think one of the aspects that I find really, again, really lovely about this is that you know, in your search, in your sort of research specifically on disparities and making sure that, again, our entire community really feels supported and treated by the healthcare professionals, you have focused a lot on, you know, kind of the health disparities specifically around the LGBTQIA plus community. So talk to us a little bit about how did you sort of start down that path. It sounds like that kind of came as you kind of got later in your career. But talk to us a little bit about kind of how did you get started on that? And then I know you have had some studies that I've found that really talk about some aspects of you know, providers providing care to this community and how things could be slightly slightly different. I think that's maybe slightly is not the right word, but could be different and could be more inclusive.
Speaker 3:Absolutely. Yeah, alicia, thank you for that question. Explore the needs of the LGBT community within the IBD community by talking to people and talking and leaning in and learning about my patients, learning about the people I'm caring for or I'm having the privilege to encountering, and I've had so many patients who come to our clinic and they share with me their life stories. They share with me their wins and successes and their downs and difficulties and through that I have encountered many folks who belong to the LGBT community who I felt experienced maybe a little more challenges or obstacles as they navigated their IBD diagnosis as well than other folks. Not dismissing or diminishing the experiences of others, but I felt that the lived experiences of the LGBT community might have been a little more challenging.
Speaker 3:Or many times many IBD patients, regardless of their sexual orientation or gender identity, feel that their providers are either dismissive or they might have a delay in diagnosis. Symptoms can be quite nonspecific. Many times that lead to testing after testing or provider after provider until finally oh yeah, you had Crohn's disease. All along, and from the LGBT community, they might fear seeking care because they fear of the stigma they might experience at a provider's office or they might feel that a provider's office might not be a safe space for them or they, if, let's say, within the LGBT community. Some folks might be more quote unquote straight and cis passing, cisgender and straight passing, but others it's harder for them to be quote unquote passing, and so they might not want to show up to a doctor's office, fearing of how people might react to them, which is heartbreaking and not right at all, because the first thing we do when we get our medical degree is we take our Hippocrates oath and we vow to take care of everybody, regardless of where or who or what they are. And so when we take that oath, we have to translate it all the way down to our practices and our clinics and have to create that safe space for all our patients to feel that they can come to us for their needs.
Speaker 3:And unfortunately, the systems that have been built over time have overlooked the LGBT community, and when the systems were built they didn't have that community specifically in mind. And so in our current state, we are faced with places that might stigmatize against that specific community, unintentionally or intentionally. And if you're dealing with IBD symptoms, you might be delaying your care because you're fearing to show up to the doctor's office or fearing to be stigmatized against and that might lead to worse outcomes related to your IBD. And that, again, was one of my driving forces of speaking up about this specific community and advocating and creating spaces that are more inclusive and creating approaches that are more inclusive in the LGBT IBD care.
Speaker 1:I agree.
Speaker 1:I think that's so important because I think just in the conversations we've had in past with past guests, past shows, talking about sexuality is uncomfortable period. But it does seem like in the conversations from the provider's perspective, like they were like, yeah, it's difficult for me to talk about it. I'm uncomfortable talking about it seems to be to be to the cisgender community. It's like there's sort of it's almost like it sort of defaults there. It's like the only way I can think about it.
Speaker 1:And so I think it is interesting and important to try to figure out how do we communicate, how A do we get the medical community, the GI providers, to be more comfortable discussing sexuality? But also, how can we sort of make sure that we're communicating that interest in that aspect of the person's life and how that may impact their disease or how their disease may impact it? And how do we communicate that in a way that is more inclusive and open instead of sort of almost feeling like the default is kind of to the cisgender community? So I think that's super important. I mean, that's one of the studies I told you I wanted to ask you about before we started was that there was a study that you were part of that, where they talked about like 95, I think it was 95% of the providers that you talked to all said yes, it's absolutely important to talk about sexuality, and especially sexuality to the LGBTQI plus community, but only 27% of them actually did it.
Speaker 3:We are not trained as part of our GI training, nor as part of our medical training, to do a thorough sexual history and to be able to eloquently and comfortably address different aspects of sexuality, sexual desire, sexual practices and sexual activities, activities and all those extremely important things. Because at the beginning of the talk of our conversation I was telling you how we have to take care of a patient holistically, and when we're thinking about somebody holistically, we're thinking about multiple or all aspects of their life and how IBD can affect every single aspect of their life and we have to better understand how IBD has impacted every aspect of their life and how can we, as IBD providers, give that person different resources, empowerment to address the different layers of how IBD impacts one's life, including their sexual health, sexual activity, sexual practices. There's a good amount of literature out there that describes the fact that IBD can impact folks' sexual drive or libido, or it can impact their ability to have sexual performances. A lot of the studies were looked at in a cisgender, heteronormative lens and not an expansive queer-inclusive lens. So a lot of these studies are more about individuals having issues with erectile dysfunction or decreased libido, but not expanding beyond that on different sexual practices and so many times when somebody who doesn't just fall into the heteronormative cisgender bucket comes to clinic and asks about any types of sexual practices or activities that are beyond the sorry missionary intercourse, we all get uncomfortable and we have a hard time addressing their concerns.
Speaker 3:Patients can read our body language. They can read our discomfort and it's such a vulnerable conversation when you, as a patient, are sharing this with your provider and asking a question about it. It because many patients do not disclose or share or ask these questions, knowing that they might not have a satisfying answer or they might be faced by squirms or moving around in your chair, being uncomfortable to respond or dismiss dismissal. So, with that said, the fact that patients do not share it, doctors or providers aren't comfortable discussing it or having well-informed conversation about sexual practices and sexual health. It ends up being an unaddressed need for patients to talk about. They might end up reaching out to friends asking about this or their partners, or maybe social media and online forums, but not well-informed, medical, evidence-based approach to sexual practices with IBD.
Speaker 2:Okay, we have had a couple of physicians on the show that have said this, and I've heard it out in the wild too, where doctors say we are not trained to do that in medical school, and sometimes I wonder but you are a human being so, even though you're not trained to manage it by medical school, it seems. Again, I've been a patient for 25 years, so it seems like it would be a normal part of conversation, in the sense that I have a disease that affects the pelvic area of my body.
Speaker 2:And so why wouldn't that affect everything that has to do with the pelvic area of my body? So that's why I'm like. I always love it when doctors say that, because I'm like okay, first of all yes, thank you Get the training but then also, like.
Speaker 3:You're a person too like where's the common sense come in. Right, so great point, robyn. We're all human. We all experience different human emotions and human physiologic parts of our bodies as well. So why do you need training to be able to address sexual health and sexual practices? Is what you're asking, right Sort of.
Speaker 2:Or why does it have to be that specific training Like? I feel like when they say we weren't trained, it's always going back to medical school and you receive so much training after medical school, right, Residency and fellowship and all of these other things. So, I love it and it also kind of makes me like giggle a little bit on the inside because I'm like, okay, we all, every other profession you have to do, you know training outside of whatever you learned in school or whatever it's like you're continuing to learn your job.
Speaker 3:You're so right, absolutely, and I didn't mean just about not being trained in medical school, but what I meant is more about being able to have this conversation and trying not to show the discomfort that you have while you're having the conversation, because it's such a sensitive and vulnerable conversation.
Speaker 3:So we do have training.
Speaker 3:A lot of times we get training about having difficult conversations or breaking bad news or talking about end of life, aspects of training or different themes and topics that we get trained in in a way that we're not robots, that we get trained in in a way that we're not robots but at least for us to like peel that band-aid and be more comfortable once we're faced with a real-life situation where we're having to deal with these situations.
Speaker 3:At least we would have done it in a more educational, structured curriculum type of setting before we're in the actual world, real-world practice of these conversations.
Speaker 3:Because it's such a sensitive topic Like, for example, end of life, you don't want to be thrown into having an end of life conversation with somebody for the first time without having any training doing it or a framework to do it and then end up saying something wrong or bad or hurtful at such a sensitive time in somebody's life.
Speaker 3:Similarly with sexual health and sexual practices, you want to at least have some form of framework or language and a way to approach it that you become comfortable with addressing it, that the first time you're addressing it in clinic or the multiple times you're addressing it in clinic, you would have at least a framework you fall back onto in the way you communicate with your patient, so that your patient knows that you are somebody who is comfortable, confident and you are somebody who they can come to and they can trust you to have such a conversation with them. Because imagine, as a patient, you bring up the topic of sexual practices with your doctor and then your doctor starts fumbling and dismissing it or moving on to another topic or start sitting on their hands and just wobbling around as you're looking at them and you're like we're all human, like why aren't you being normal about it?
Speaker 2:Why aren't you being normal I? Would definitely say that. What's wrong with you? Why aren't you being normal right now?
Speaker 3:Right right, why aren't you being normal right now and just answering my question? But it's more about like, different people have different levels of vulnerability, openness, and also different levels of being reserved or being open or conversational, so we cannot expect that everybody reacts to different conversations or topics in the same way. The most important thing is to remember that, just like you're talking about poop in clinic and we're comfortable and do it like it's our second nature, we have to channel that emotion of oh, I'm comfortable, talk to me about your poop all day. Okay, let me channel that into how I'm going to be talking to you about all the other aspects that might be or might not be comfortable, and also practicing different frameworks or different scripts that would allow me to become more comfortable in bringing it up, because the patients might not bring it up.
Speaker 3:The majority of patients do not bring up sexual health and sexual practices. So I tend to ask all my patients what do you do for sex? Are you sexually active with men, women or both? What are different sexual practices you engage in? And I preface it by saying, because of IBD impacting every aspect of your life, I want to make sure that you are addressing all the elements of your life that might be impacted and some of them that you might not bring up to me. I am bringing it up to you to tell you that I am a safe space for you to talk to me about this and if you don't want to talk about it this time, maybe next visit you can tell me more if you want, and I'm happy to answer. And I do that about everything else. I do that about how are you doing, how's your mood doing, how's your mental health doing, how are your relationships? How is IBD impacting your progress and your career goals. So it's like thinking about every element, and we recognize that not every provider has enough time to spend that much time with talking about your diagnosis, all the healthcare maintenance needed, all the treatment options or how you've been doing on the treatments, and then to address all these other very important aspects of your life that might be impacted by IBD within a 15-minute visit. It's impossible, but remember that we have a longitudinal relationship with that patient and with that person and not everything needs to be addressed today.
Speaker 3:And these are things that you could say cliffhanger. On our next visit, how about? We might also talk about your sexual health? Or on our next visit? How about we might talk about your career goals, because, oh, you're in remission and you've been doing great. Let me maybe know you better next time about other parts of you that might be important towards your care. So that's how I view it and I've familiarized. Although I didn't have a formal curriculum that I've gone through. I channel a lot of other ways, whether it's having difficult conversation curriculum that I've gone through before, or having end of life conversation that I've gone through. I channel these frameworks into other types of conversations so that I've gone through. I channel these frameworks into other types of conversations so that I have more openness, more vulnerability, more authenticity with my patients and being more comfortable around these topics.
Speaker 2:New CE program led by Dr Victor Chedidi. Just by being able to ask the question in a real and honest way, you give your patient permission being able to ask the question in a real and honest way.
Speaker 2:You give your patient permission.
Speaker 2:You give them, whether they want to talk to you about it or not, where you're like the way that you asked that question, I was like, okay, let's talk about it, I'm ready to answer that question for you because it's just a real and honest way to ask it.
Speaker 2:And by you being willing to be the first person to ask the question, that gives your patient space to say like, okay, I'm not ready to talk about it now, but I could be ready to talk about it in the future. And also, I mean people aren't even comfortable talking about poop all the time. I mean I've had IBD for 25 years and my parents sometimes will still say we don't, don't talk about that. And I talk about poop every single day of my life. It's such a big part of my life. I never thought poop would be such a big part of my life, but it is. And so I do really understand you saying how sensitive the topic is and how some people are not comfortable talking about it, because a lot of people in my life don't even want to talk about poop Right, which is everybody poops.
Speaker 3:Everybody poops.
Speaker 2:At least once a day, hopefully. If it's not once a day, you should probably see a gastroenterologist.
Speaker 3:No listen.
Speaker 2:I'm looking at you, Alicia. Everybody has a difference.
Speaker 3:I actually think that a normal bowel movement frequency is patient by patient.
Speaker 2:Some people might go every other day.
Speaker 3:Not necessarily once a day, Some people every other day is normal for them and they don't need to see a gastroenterologist.
Speaker 1:I agree with Robin. I do think the fact that you open it up and you say it in such a matter of fact way really, I think, does probably make people feel a lot more confident talking to you about it. But one thing you said is, like you know, talking like maybe you're in remission and it's not bothering you, but I do think there's been some people we've talked to that even when they're in remission, this sort of ripple effects of of things like surgeries still impact their sexual health. So can we talk a little bit about like I would imagine that if gastroenterologists aren't super great about talking about this, I would imagine surgeons don't get gold stars either, maybe even less gold stars. So, you know, can we talk a little bit about as somebody is? You're talking to a patient, maybe they're approaching a surgery either. You know J-pouch fistula repair, something like that. Like how are you talking to them about the potential ramifications of what this may do for them in lots of ways and including sexual health?
Speaker 3:Yeah, that's a great point and I have to preface it by I love our colorectal surgeons. They're tremendous and I have a lot of. Them are my friends on direct call. We go back and forth thinking about ways to better improve our patients' care. We recognize we're all part of a multidisciplinary team of advocates and caregivers and providers who are putting that patient in the center of everything. And so I've had discussions a lot with a lot of my colorectal surgeons and so I've had discussions a lot with a lot of my colorectal surgeons and some of them actually I noticed that patients go to them about sexual practices before they come to us and ask us especially if they're undergoing a pelvic type surgery, like a total colon removal with a J pouch formation, or they're having their entire colon removed with the closure of the anus or what some people might call a barbie butt.
Speaker 3:So the patients would many a times go to the surgeon to ask about sexual practices. When is it okay for me to have sex? How is it safe for me to have sex or not? Is it safe for me to have penetrative vaginal or penetrative anal sex when I have a J pouch? Will my J pouch surgery impact my ability to have an erection if somebody has a penis. So so many questions that they go to the surgeons. Some of it has been studied, like I said, in a heteronormative cisgender lens. Studied, like I said, in a heteronormative cisgender lens. But, like the aspects of anal receptive intercourse or anal sex in folks who have had J-pouch surgery, for example, this has not been studied systematically so we don't have evidence-based data to guide our patients on. Is it safe? Is it not safe If the pouch was hand-sewn versus was stapled? Does it have better compliance if it was hand-sewn and you're able to engage in anal sex better? Or the rectal cuff is a little longer versus shorter, does that have any difference on anal sex? And that's where I brought up the fact that having that conversation prior to surgery with a patient might modify how the surgeon might want to approach the surgery in a way or another, and not that there is again a lot of data to support which way to go with the surgery. But it might help the surgeon maybe create a little larger pouch if a patient is engaging in anal receptive intercourse or giving them counseling on when it would be safe, which, again, we don't have data, but assuming that if the pouch healed and now it's normal.
Speaker 3:You don't have issues with pouchitis or stricture or narrowing at the site of the surgery, then I don't see why not. If you're practicing safe approaches to anal penetration or anal intercourse, I don't see why not. Why can't you individualize the approach to that specific patient? Okay, you've not had any issues with pouch inflammation or pouchitis. Your pouch anastomosis or suture area is flexible. So if you use a lot of lube, take it slow. Know what's good pain, what's bad pain, know when to say stop, when to say go.
Speaker 3:Have that mutual communication with your partner and engage with your partner, involve them in your care if you want to. You can involve them as much as you want or as much as you don't want. And not everybody we cannot assume everybody is in a monogamous relationship. Some people have multiple partners, can be polyamorous or can be in open relationships or there are a whole variety of sexualities and sexual experiences that we have to honour and understand and be able to guide that specific individual based on who they are, how they navigate life, they navigate their sexual experiences and sexuality and navigate that surgery approach. So there isn't a one glove fits all, but that's the importance of having that sit down and communication and leaning in and listening and trying to better guide that person.
Speaker 3:If somebody ended up acquiring closure of the anus with the quote unquote Barbie butt, that person will not be engaging in anal receptive intercourse.
Speaker 3:And that'd be important to have that conversation with that person before.
Speaker 3:Because for many people not only gay men engage in anal receptive intercourse. It is a very common practice that we don't ask about, but we know that a lot of straight women, straight men, lesbian women, gay men, trans person, every type of person might engage in anal intercourse. And so by leaning in and asking and knowing your patient better, you would know what are their sexual practices and you would be able to counsel them accordingly to what is appropriate for them. And also many people might feel that this is part of their identity when they engage in anal intercourse. Within the gay community, for example, some people are exclusively what they call bottoms, so they only engage in anal intercourse and they're only on the receiving end. So if that person is going to be losing their rectum, they might be losing part of their identity and their sexual identity and that might have a big impact on somebody's morale, on somebody's mental health and how they navigate life, and so that's where, again, the communication is key. Having these conversations is key.
Speaker 1:Yeah, that would be a tough one. That would be a tough conversation to have with somebody because you're right, if that is such a big part of their life and a big part of their sexuality, then that's a hard conversation, right.
Speaker 3:Absolutely, and again, that's why I channel my training in difficult communication and conversations.
Speaker 1:Yeah, yeah, so I'm guessing that there's a very significant lack of literature around caring for the transgender and sort of gender diverse community, you know, because it seems like there would be a lot of hazards around this. You know you're having a doctor kind of downstairs is for anybody is uncomfortable, but having that for somebody who perhaps is really again is not in this cisgender pool, it feels like there there would be a lot of potential folks that might be dealing with some medical trauma, some medical gaslighting that may have happened and some real discomfort with getting care. Is there any research on that? Like I kind of assume the answer is no, just because you said there are some people that avoid care because of kind of bad experiences and because of, you know, having doctors that may have asked questions the wrong way or made assumptions. So is there any research on this and is there a way that doctors can maybe, like the doctors that are not you, who clearly do this very well, could be better equipped to work with people that are part of the trans community?
Speaker 3:better equipped to work with people that are part of the trans community. So there isn't much research on it in IBD, on the trans community specifically in IBD. There are a couple of papers that recently were published more on the impact of gender-affirming hormones on IBD disease activity. One came out of Johns Hopkins. One is a multi-center study. I'm part of that study. We published it a few months ago. It was led by Dr Audrey Bennett and that study looked at the impact of gender-affirming hormones on transgender folks who have IBD one year prior to initiating gender-affirming hormones and one year past gender-affirming hormone initiation. And our aims were to look at rates of flare after initiating gender-affirming hormones and what was interesting in our study is that we showed that there wasn't an increased rate in general. Overall there wasn't an increased rate of flares when you initiate gender-affirming hormones in this community. But there was one signal, for testosterone maybe can result in a slight increase in risk of flaring in a transmasculine community.
Speaker 3:But that does not mean I caution this, with multiple cautions is that gender-affirming hormone is life-saving care and life-saving treatment and therefore it should never be that we're blaming something on the gender-affirming hormones and make the person stop that, because we recognize that when somebody is on their journey of transitioning, they have gone through a lot to reach to that journey. It's not something that's overnight that somebody decides to transition. It's something that has been, that the person has gone through a lot to reach to that point and so by the time they've reached that point, we know that gender affirming hormones has a great impact on somebody's gender dysphoria, on somebody's mental health. Risk of suicide is decreased after somebody starts gender affirming care and gender affirming hormones and therefore, as an IBD doctor, my role isn't to play the broken arm syndrome or always blaming the gender-affirming hormones on any flair that that patient might have thereafter. My job is to acknowledge that this person is in a much better place now that they're transitioning and they're living their authentic self and authentic life. And how am I going to navigate or help you navigate your IBD around that? And so, with our study, when we saw that there was a signal with testosterone somebody who's starting on testosterone I might have a more close monitoring on their IBD in the year after initiating testosterone just to make sure they are safe and remain in remission, and if there needs to be any minor adjustments to their IBD treatment, I would definitely do that, so that is important to keep in mind.
Speaker 3:With that said, you brought up very important points that the trans community, but also people who have IBD, have experienced medical trauma gaslighting, dismissal, delays in care and all those things. More so the trans community, for sure, but what I'm getting at is that I approach every IBD patient, but more so the LGBT community and specifically the trans community, with trauma-informed care, and that means I assume everybody might have some level of trauma. And every step of the way I am approaching that person with a great degree of sensitivity, giving them step-by-step what we're doing, pros and cons of why we're doing it. Specifically, within GI, a lot of our exams involve an anal exam or a rectal exam involves endoscopies that involve around the genital area. So making sure you're very sensitive around that and informing the patients the benefits and risks of a rectal exam why am I doing it, why is it necessary in your particular case and giving them the power and the empowerment to say, no, I don't want to get a rectal exam. I recognize the risks and benefits, but I'm not engaging in it today or maybe next time or never, and I respect that. My job is to make sure that I inform the patient about the risks and benefits. Why am I doing something and they consent to it or not.
Speaker 3:So, again, the trauma-informed approach is extremely important in any approach, whether in clinic or in endoscopy. Making sure that when you're examining the pelvic area particularly the anal exam or rectal exam that you reassure somebody who might be experiencing gender dysphoria the transgender folks that you're not going to be exposing their genitals to the entire room in endoscopy and that their genitals are going to always be covered. But I do that for anybody. I make sure that your genitals are covered at all times during your colonoscopy because we make sure that we're just exposing the part that we need to expose when we're doing your colonoscopy to make sure that we are doing the good exam, the right exam, without exposing you beyond. That needs to be exposed because of how vulnerable this type of exam is. So if every gastroenterologist approaches every patient with IBD with such a trauma-informed framework, particularly in the LGBT community and specifically the transgender community, it's going to take them a long way in their patient rapport, in my opinion.
Speaker 2:I have to take you back to the hormones for one second, because this is a pedestal that I get on a soapbox. So there is evidence and please correct me if I'm wrong that biological females' hormones affect their IBD already. So do you think that the gender-affirming care plays a similar role for biological females, and it's not just because it's for this purpose? We already know that hormones affect biological females, so do you think that that is part of it?
Speaker 3:I think so. Yes, the answer is yes because we know from studies in cisgender females that estrogen can have a pro-inflammatory element and can make IBD flares worse. And what we were interested in is to see the rates of flare in the transgender community prior and post starting gender-affirming hormones, whether it was estrogen or testosterone. And what I said is that there wasn't an increased rate of flare prior and post. And recognizing that was a retrospective study from a chart review study. It's not a clinical trial with prospective follow-up and a randomized blinded control trial approach. It's a chart review study that is impacted by biases that could be from the chart, extraction and missing data and all that. But recognizing that this is the only evidence we have right now and it is important evidence to drive that message, it doesn't dismiss the fact that we know from biological studies on lab studies, like on mice and also on humans, that some of the gender hormones, like estrogen, testosterone, estrogen specifically can have more pro-inflammatory effects on IBD.
Speaker 2:Yes, no, I mean, I just feel like hormones affect it much more than anybody knows, because there's not a lot of research on it and so yeah, I assumed you were going to ask that question, Robin.
Speaker 3:Yeah, and many, many folks when they're having their menstrual cycles they notice maybe that their IBD can flare around their menstrual cycles In pregnancy. We know that if somebody has active IBD at the time of conception, their IBD if it's active at the time of conception, there's a two-thirds chance of the IBD getting worse or staying the same during the pregnancy and one-third chance of the IBD getting better, while if the IBD is in remission at the time of conception, their chances of the IBD staying in remission throughout the pregnancy is around two-thirds chance. So that's why a lot of our counseling when somebody is interested in prenatal counseling with IBD, we do counsel about the importance of achieving remission prior to conception.
Speaker 2:I think that it's not across the board. Estrogen, progesterone, testosterone Again, I am not a scientist, I am just a patient with lived experience. I just feel like it affects IBD more than anybody really knows and I would hate for somebody not to get the gender-affirming care that they so richly deserve because of fear of a flare when that is like when hormones are can affect, no matter what, I see what you're saying.
Speaker 2:I'm starting to tear up right now, just saying that, like I just I think that I think that would be a huge disservice because it's the hormones affect us all, no matter what our biological gender is how we identify. It affects our IBD, no matter what.
Speaker 3:Right and again that comes from a place of recognizing that a trans person doesn't come to the beginning of their transitioning journey overnight. They've gone through a lot till they've reached that beginning of their journey and the person treating them might have implicit biases against that community. Specifically, and when they're counseling for stopping gender affirming hormones, they might be thinking they're giving them out of their best interest right Like I'm telling you to stop this because I'm trying to give you what's in your best interest but that might be fraught with a little unintentional implicit bias of oh, you're doing this to yourself, you don't need to transition, and that's not the way we should be approaching somebody who have reached the beginning of their transitioning journey, which is a big deal for somebody, and this is an amazing thing when somebody actually gets to start living their authentic self.
Speaker 1:Well, and I don't know, it just reminds me of like there's risk in treating everything you know the medications. Yeah. So I mean like this this risk of taking a you know a hormone in causing a flare is I don't know. I kind of akin to like saying, okay, don't take a biologic because there's a tiny chance that you may develop cancer, kind of thing.
Speaker 1:It's like well, one of the doctors are really saying, well, don't take a biologic because there's this tiny chance you may develop cancer, kind of thing. And it's like, well, one of the doctors are really saying, well, don't take a biologic because there's this tiny chance you may get cancer. So I don't know, to me it's like you're going and you're saying one thing but you're like the other one is basically akin in my mind.
Speaker 3:That's a great point, alicia, that you just made, so thank you for making that point. We always talk about risks and benefits of everything, so why do we not see it the same way when we're counseling somebody who's transgender and transitioning?
Speaker 1:Yes, I know. One of the other studies that I was looking at when I was looking you up is that you culturally sensitive practice.
Speaker 3:Yes.
Speaker 1:I'm curious especially how that layers in with also working with LGBTQI plus community. I would imagine there's some distinct differences in kind of how you might work with some people, some cultures. I don't know this, but I kind of assume that layering in sort of some cultural differences might also make this a very different conversation you might be having with people, or like it might be that there's the family is involved and what happens if the whole family's in the room and how are you talking about sexual practices with dad sitting next to somebody you know so curious about all of that.
Speaker 3:So in that paper we actually explored the concept of cultural sensitivity in IBD care and, in specific, what you just defined is called intersectionality intersectionality of identity, and so that means that if somebody is gay, it doesn't mean that they're just gay. It doesn't mean that everything that applies to one gay person applies to all gay people and you can just go on treating every person the same way entity, and that includes what their race is, where their nation of origin is, what their immigration status is, what their ethnicity is, their gender, their sexual orientation, their household income, educational status All of that intersects to make that one human being. So each aspect that I just mentioned has a different impact on that person's journey through their healthcare experience or their IBD journey. Which means that if somebody belongs to the LGBTQ community and I don't want to put it all in one bucket because I want to get a little more nuanced here If somebody is cisgender male, gay and Indian, of Indian origin and born in the United States, so that person is American and also medical student. That person's lived experience is very different than a cisgender male, gay, but Indian, born in India and a medical student. And in order to better understand the experience of that one first person that I gave you as an example. To that second person you have to lean in and to have more cultural sensitivity and understanding, because if I assume that, oh, they're both of Indian origin and therefore they might believe the same things and have the same lived experiences, then I've made so many biases and shortcuts that have completely done both of them a disservice and I've approached their care in a way that is not helpful for either of them. So what I always do is try to leave my biases at the door before I walk into the room, and I always try to check with myself what are my biases, and so I try to listen to that person.
Speaker 3:Tell me about your lived experience. How is it being American, born of Indian origin, being gay and having IBD versus? How is it for you, who is maybe recently immigrated to the United States and navigating the immigration system along with navigating everything else, living with IBD as well? And so the insurance, for example, access for that one person might be very different than the insurance access for that person, and I might need to give more resources to that person who's navigating also their immigration status and their identity. They might not be fully out, they might be half out to some friends, but not to their parents. And again, it's all about knowing that person in front of you so that you would be able to tailor the care for that one person here versus the care for that person there, so that you would get the best outcomes for either of them.
Speaker 3:You cannot just blanket make assumptions and blanket prescribe different medicines, assuming that everybody is going to have the same experience. And so that's where cultural sensitivity comes to play, and I hate the word cultural competence, which I've heard in many historic trainings where they say oh, we're going to do cultural competence training and this is a major assumption that you're assuming you're mastering the care of all different cultures and you're competent. Nobody's ever going to be competent in anything culturally related because there's layers and layers and layers of nuances. So that's where cultural humility is a better approach.
Speaker 3:Cultural sensitivity and humility where I acknowledge that I don't know a lot, and one of my mentors that I quote a lot. He says in our current state of ignorance, because we know a lot, we study a lot, but there's way more that we don't know, whether in medicine and our medical knowledge and also in our cultural knowledge and in our approaches to human beings, and so that's where I say approaching people with more cultural humility, leaning in recognizing intersectionalities of identities, leaning in recognizing intersectionalities of identities, leaving your biases at the door as you're talking to people, is a great approach, in my opinion, that you should incorporate in your IBD care.
Speaker 2:I'm really sad that I have to ask you the last question, because I feel like that even that answer to Alicia's last question, I'm like okay, I have three more questions that I want to ask you but we've already been talking to you for more than an hour.
Speaker 3:It's been so fun. Thank you.
Speaker 2:I adore you.
Speaker 3:J'adore.
Speaker 2:Completely, and what is the one thing you want the IBD community to know?
Speaker 3:Well, I thought a lot about this one and I think I settled on the one thing, and I would like to say that people living with IBD are the experts of their own bodies and so when they say something feels off, it's not a guess, it's a lived experience. I would trust their voice. It's not just compassionate care when you trust their voice, it is clinically sound practice. I think patients with IBD are more than just their diagnosis. I think patients with IBD are more than just their diagnosis. They have their intersectional identities and to truly care for them, we must embrace their full identity clinically, culturally, personally and build care models that are inclusive, affirming and responsive to their lived experiences. And that's all.
Speaker 2:Trust and believe. I have said that. Listen and believe. Believe your patients when they tell you. Believe your patients when they tell you.
Speaker 3:Believe your patients when they tell you Like many times the patient is telling you something is off, because something is off. It might not be that there's really high inflammatory markers or active inflammation. It might be something else that you want to explore with them and try to better understand, because many times I see people cycling through biologics when in fact their disease has been quiet for a long while and they've been responding to that initial biologic. But every time a patient comes in with I feel off or something is wrong. The first go-to is to change the treatment when in fact it could have been an issue with pelvic floor dysfunction or abdominal wall pain or something related to their gut brain access, where their mental health or SIBO, like so many things, that yes, so no. That's, that's the truth, and so that's why I say believe your patients, but also try to explore things outside the box to be able to better serve them yeah, I think, especially since there is it's not like we have a bajillion treatments for inflammatory bowel disease.
Speaker 1:You know there's there's a limit, and so you're right, cycling through the different medications is a bit dangerous, because then what happens if you get to the end of the line?
Speaker 3:Right, yeah, yeah.
Speaker 1:Right, but also the more important is listen to your patients. That is the perfect response to that question.
Speaker 1:And maybe we have to stop asking the question because I don't know, I think you just dropped the mic on everybody, and so it has been such a pleasure to have you on the show. We've really, really, really enjoyed our conversation and we just are so impressed with the work that you're doing. It's so important and definitely life-changing life-saving for people, I think, in a lot of ways. So thank you for that and thank you everybody else for listening to the show and cheers guys.
Speaker 3:Cheers, cheers, cheers. Thank you for having me. Hi, this is Victor Shadeed, and if you enjoyed this episode, please rate, review, subscribe and share with a friend.
