September 10, 2025 • 53 mins
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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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi, I'm Alicia and I'm Robin, and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week, robin and I had thegreat pleasure of talking to Dr
Victor Shadeed.
Dr Shadeed is agastroenterologist and associate
professor at the Mayo Clinic inRochester, minnesota.
(00:22):
He's also the director of theirPride Clinic and has a special
interest in researching healthdisparities in inflammatory
bowel disease, particular to theLGBTQI plus community.
We had a really, really greatconversation with him, talking
all about inclusive care ofindividuals part of the LGBTQI
plus community and also a lotabout how doctors can get
comfortable talking to theirpatients around their sexuality.
(00:43):
So just a fair warning toeverybody that we do get in
depth and talk about sexualpractices in this episode, so it
may not be appropriate foreverybody, but we think you'll
find this conversation just asfascinating as we did and we
hope you'll get as much from itas we did.
Cheers.
Speaker 2 (01:01):
Hi everybody, Welcome to Bowel Moments.
This is Robin.
Speaker 1 (01:04):
Hello everyone, this is Alicia and we are absolutely
delighted to be joined by DrVictor Shadeed.
Dr Shadeed, welcome to the show.
We are really excited to hearall about you and your work, but
our first, very unprofessionalquestion is what are you
drinking?
Speaker 3 (01:18):
Well, hi, robin and Alicia, I'm so happy to be here
and I'm still at work, so it isa boring iced coffee and the ice
has melted, so I'll continuedrinking it, and it's still cold
, so that's good.
Speaker 1 (01:32):
It's just watery coffee now, unfortunately.
Speaker 3 (01:33):
It's watery coffee now Still does the job, though.
Speaker 1 (01:40):
I hope so, Robin, you're probably drinking coffee
too.
You're a big coffee in theafternoon woman as well.
Speaker 2 (01:46):
I am.
I debated on getting a freshcup but I'm actually drinking
flavored sparkling water on TopoChico.
But I have a lime and mint TopoChico.
Speaker 3 (01:56):
Oh, I've been wanting to try those yeah.
Speaker 1 (01:59):
They're good.
We're big fans of Topo Chico.
However, Robin, I could havesworn that last time we talked,
you made a comment about notdrinking as many bubbles.
Speaker 2 (02:07):
Yes, that is true, and I will regret this later.
That is true.
Speaker 1 (02:12):
Robin's day.
Pouches doesn't love thebubbles, unfortunately.
Speaker 2 (02:15):
No, well, I think it was the SIBO that didn't like
the bubbles, and then it was.
I took antibiotics and I wasbetter and now I feel like
probably coming back.
I probably will be messaging mydoctor after the show actually,
so like, hey, I think the SIBOis back, but I really.
They're delicious and it'sworth it.
It's just one day, it's justone bubbly beverage.
Speaker 3 (02:38):
Hey, you deserve the joy of one bubbly beverage.
I would give that to you.
Speaker 1 (02:44):
Yes, that's right Doctors orders Robin.
Joy of one bubbly beverage.
I would give that to you.
Speaker 2 (02:49):
Doctor's orders Robin .
Speaker 1 (02:50):
I like it.
What about you?
Dr Chidi is not providingmedical advice.
This is not what's happening onthe show?
Speaker 3 (02:55):
Absolutely not.
We're here as friends havingcoffee.
Speaker 1 (03:03):
I love that.
That's perfect.
Well, I am also drinking bubblywater as well, robin, but I've
got a San Pellegrino Essenza andthis is their kind of their
Topo Chico-ish.
This one is blood orange andblack raspberry.
It's nice, it's nice.
Why are bubbles bad with SIBO?
Speaker 3 (03:14):
So it's more about the bubbles causing bloating,
and when you drink more bubblesyou're going to have more
bloating and SIBO gives yousymptoms of bloating.
So when somebody has SIBO andthe bubbles won't cause SIBO but
would just make your bloatingworse, and so many a times when
I see a patient with isolatedbloating we can't identify other
(03:37):
causes of their bloating.
Part of the lifestylemodifications that we discuss
and part of the plan that wediscuss is to avoid bubbly
drinks, to avoid sipping out ofa straw and to avoid gulping.
So these are all little tricksthat you would do to help just
reduce the symptom of bloating,which sometimes is one of the
most difficult GI symptoms totreat, as maybe Robin can attest
(04:00):
.
Speaker 2 (04:00):
And my bloating is painful.
Not everybody has painfulbloating but mine is very
painful.
Speaker 3 (04:07):
I'm sorry.
Speaker 1 (04:08):
The next official question for you is tell us your
IBD story.
What brought you into ourcommunity?
What made you decide to becomea GI doctor?
Speaker 3 (04:15):
So I go back to when I was in medical school at the
American University of Beirut inLebanon.
That is where I grew up.
Also, I know that a ton ofpeople all around me one of
their first things that theyshare whenever they know I'm a
doctor is GI symptoms.
It's like right away you meetthe person and GI symptoms is
(04:35):
their first thing they want todiscuss with you.
Even when I was a medicalstudent that was what people
would want to discuss and I usedto like find it intriguing,
because all of us eat, all of usexperience a lot of variations
of GI symptoms, a huge array ofit, and everybody in our
lifetime has had one or anotherGI symptoms at different,
(04:58):
varying degrees, differentseverities, different
frequencies and all that.
So there's that.
So I got intrigued by thephysiology of the
gastrointestinal tract andstudying that in med school.
And then as I progressed andwent to the end of med school,
trying to decide whatspecialties I want to go to, I
knew that I am somebody wholoves to do procedures but also
(05:20):
loves to take care of a patientholistically in clinic.
So with that it was a sort ofin-between for me in my mind
between gynecology andobstetrics or gastroenterology
or internal medicine and thengastroenterology.
So I actually went through theprocess of applying for
(05:40):
obstetrics and gynecology.
I thought I have it in me to bethat person, and then I did all
my application for obstetricsand gynecology.
I thought I have it in me to bethat person and then I did all
my application for obstetricsand gynecology, went through
sub-internships as part of mytraining in OB-GYN here in the
United States.
So I traveled from Lebanon formed school.
I did a couple of months here inthe United States observing and
(06:01):
working with OB-GYNs and at thesame time was applying for that
residency training and I couldnot see myself in it.
I hated it.
I felt that this is not theright fit for me.
So I actually withdrew from theOB-GYN application process and
the match and I pivoted myentire career towards internal
(06:25):
medicine, knowing that I want tothen proceed to
gastroenterology.
So then an opportunity came upwhere I got an award to go to
Johns Hopkins University to doresearch and over there I was
mentored by an amazing mentorwhose name is John Clark.
He mentored me on a lot ofresearch approaches for motility
(06:47):
disorders and I thought thatwas really intriguing and
interesting.
And then I moved on forresidency to the University of
Pittsburgh and the University ofPittsburgh was well known as an
IBD center.
At the time I was there, therewere great people in IBD there
Dr David Binion, dr MiguelRuguero, dr Jana Hashash so all
(07:08):
these folks.
I was still a little internresident in internal medicine
and my eyes were excited aboutall the work that they've been
doing and I started working onresearch with them.
My research was focused onpsychiatric elements related to
IBD.
I looked at depression, anxiety.
I looked at suicidality in thatpopulation and that broke my
(07:29):
heart, recognizing that IBDfolks are folks who are
diagnosed at a younger age.
It was people who are my age,going through all these
different life milestones andtransitions as they're
navigating a chronic illness ata young age, and I saw the
resilience in this population.
I saw how they are allexcellent, excelling in their
(07:52):
life despite this big burdenthat has been put on them, and I
felt that this is my callingand that's where I moved on to
GI fellowship at Mayo Clinic andknew that I want to pursue IBD.
I also did research in motilityand IBD and then I moved on as
I joined staff at Mayo Clinic tolook at more health disparities
(08:17):
and health equity in the IBDcommunity, particularly in the
LGBT community.
Speaker 1 (08:22):
So that's where I am now how beautiful that story was
, though I love that this is thecareer that spoke to you.
I mean, that's really wonderfulto hear.
Speaker 3 (08:30):
Yeah, it remains to be a mystery in many ways of
things that we don't know aboutdifferent aspects of how we
treat IBD, how it manifests, thedifferent layers of it that
we're still all peeling andtrying to figure out together.
I love the community we have inthe IBD world, where it's a
(08:50):
community that is involving notjust the MD and that's it.
In fact, I learn more from mypatients, I learn more from
patient advocates than I wouldlearn from a colleague many a
times.
I learn more from havingconversations and there are so
many nuances that it's not donein one way and that's it.
There are so many differentways that approaching so many
(09:13):
different aspects of IBD careand it's such a rewarding and
privilege to be part of thatvillage or part of that
community advancing caretogether.
So I love that part.
Speaker 1 (09:24):
And we love that.
You love it because I thinkhaving providers like you who
really like take that approachto it and really feel that
deeply about the patientcommunity, I think is really,
really important.
I mean, you're the type ofdoctors that I think make a
difference in the care and workpassionately to make sure that
we're trying to figure out howdo we really treat people well
while they're coping with this,while also trying to figure out,
you know, what's the cause andhow do we cure this.
(09:46):
So I think that makes me happyto hear Thank you.
I think one of the aspects thatI find really, again, really
lovely about this is that youknow, in your search, in your
sort of research specifically ondisparities and making sure
that, again, our entirecommunity really feels supported
and treated by the healthcareprofessionals, you have focused
a lot on, you know, kind of thehealth disparities specifically
(10:08):
around the LGBTQIA pluscommunity.
So talk to us a little bitabout how did you sort of start
down that path.
It sounds like that kind ofcame as you kind of got later in
your career.
But talk to us a little bitabout kind of how did you get
started on that?
And then I know you have hadsome studies that I've found
that really talk about someaspects of you know, providers
providing care to this communityand how things could be
(10:28):
slightly slightly different.
I think that's maybe slightlyis not the right word, but could
be different and could be moreinclusive.
Speaker 3 (10:33):
Absolutely.
Yeah, alicia, thank you forthat question.
Explore the needs of the LGBTcommunity within the IBD
community by talking to peopleand talking and leaning in and
learning about my patients,learning about the people I'm
caring for or I'm having theprivilege to encountering, and
(10:57):
I've had so many patients whocome to our clinic and they
share with me their life stories.
They share with me their winsand successes and their downs
and difficulties and throughthat I have encountered many
folks who belong to the LGBTcommunity who I felt experienced
(11:19):
maybe a little more challengesor obstacles as they navigated
their IBD diagnosis as well thanother folks.
Not dismissing or diminishingthe experiences of others, but I
felt that the lived experiencesof the LGBT community might
have been a little morechallenging.
Or many times many IBD patients,regardless of their sexual
(11:41):
orientation or gender identity,feel that their providers are
either dismissive or they mighthave a delay in diagnosis.
Symptoms can be quitenonspecific.
Many times that lead to testingafter testing or provider after
provider until finally oh yeah,you had Crohn's disease.
(12:01):
All along, and from the LGBTcommunity, they might fear
seeking care because they fearof the stigma they might
experience at a provider'soffice or they might feel that a
provider's office might not bea safe space for them or they,
if, let's say, within the LGBTcommunity.
Some folks might be more quoteunquote straight and cis passing
(12:25):
, 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 isheartbreaking and not right at
all, because the first thing wedo when we get our medical
(12:46):
degree is we take ourHippocrates 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 andour clinics and have to create
(13:06):
that safe space for all ourpatients to feel that they can
come to us for their needs.
And unfortunately, the systemsthat have been built over time
have overlooked the LGBTcommunity, and when the systems
were built they didn't have thatcommunity specifically in mind.
And so in our current state, weare faced with places that
(13:32):
might stigmatize against thatspecific community,
unintentionally or intentionally.
And if you're dealing with IBDsymptoms, you might be delaying
your care because you're fearingto show up to the doctor's
office or fearing to bestigmatized against and that
might lead to worse outcomesrelated to your IBD.
And that, again, was one of mydriving forces of speaking up
(13:56):
about this specific communityand advocating and creating
spaces that are more inclusiveand creating approaches that are
more inclusive in the LGBT IBDcare.
Speaker 1 (14:09):
I agree.
I think that's so importantbecause I think just in the
conversations we've had in pastwith past guests, past shows,
talking about sexuality isuncomfortable period.
But it does seem like in theconversations from the
provider's perspective, likethey were like, yeah, it's
difficult for me to talk aboutit.
I'm uncomfortable talking aboutit seems to be to be to the
(14:35):
cisgender community.
It's like there's sort of it'salmost like it sort of defaults
there.
It's like the only way I canthink about it.
And so I think it is interestingand important to try to figure
out how do we communicate, how Ado we get the medical community
, the GI providers, to be morecomfortable discussing sexuality
?
But also, how can we sort ofmake sure that we're
communicating that interest inthat aspect of the person's life
and how that may impact theirdisease or how their disease may
(14:56):
impact it?
And how do we communicate thatin a way that is more inclusive
and open instead of sort ofalmost feeling like the default
is kind of to the cisgendercommunity?
So I think that's superimportant.
I mean, that's one of thestudies I told you I wanted to
ask you about before we startedwas that there was a study that
you were part of that, wherethey talked about like 95, I
think it was 95% of theproviders that you talked to all
(15:17):
said yes, it's absolutelyimportant to talk about
sexuality, and especiallysexuality to the LGBTQI plus
community, but only 27% of themactually did it.
Speaker 3 (15:28):
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 andcomfortably address different
aspects of sexuality, sexualdesire, sexual practices and
(15:50):
sexual activities, activitiesand all those extremely
important things.
Because at the beginning of thetalk of our conversation I was
telling you how we have to takecare of a patient holistically,
and when we're thinking aboutsomebody holistically, we're
thinking about multiple or allaspects of their life and how
(16:11):
IBD can affect every singleaspect of their life and we have
to better understand how IBDhas impacted every aspect of
their life and how can we, asIBD providers, give that person
different resources, empowermentto address the different layers
of how IBD impacts one's life,including their sexual health,
(16:35):
sexual activity, sexualpractices.
There's a good amount ofliterature out there that
describes the fact that IBD canimpact folks' sexual drive or
libido, or it can impact theirability to have sexual
performances.
A lot of the studies werelooked at in a cisgender,
(16:56):
heteronormative lens and not anexpansive queer-inclusive lens.
So a lot of these studies aremore about individuals having
issues with erectile dysfunctionor decreased libido, but not
expanding beyond that ondifferent sexual practices and
so many times when somebody whodoesn't just fall into the
(17:20):
heteronormative cisgender bucketcomes to clinic and asks about
any types of sexual practices oractivities that are beyond the
sorry missionary intercourse, weall get uncomfortable and we
have a hard time addressingtheir concerns.
Patients can read our bodylanguage.
They can read our discomfortand it's such a vulnerable
(17:43):
conversation when you, as apatient, are sharing this with
your provider and asking aquestion about it.
It because many patients do notdisclose or share or ask these
questions, knowing that theymight not have a satisfying
answer or they might be faced bysquirms or moving around in
your chair, being uncomfortableto respond or dismiss dismissal.
(18:05):
So, with that said, the factthat patients do not share it,
doctors or providers aren'tcomfortable discussing it or
having well-informedconversation about sexual
practices and sexual health.
It ends up being an unaddressedneed for patients to talk about
(18:25):
.
They might end up reaching outto friends asking about this or
their partners, or maybe socialmedia and online forums, but not
well-informed, medical,evidence-based approach to
sexual practices with IBD.
Speaker 2 (18:38):
Okay, we have had a couple of physicians on the show
that have said this, and I'veheard it out in the wild too,
where doctors say we are nottrained to do that in medical
school, and sometimes I wonderbut you are a human being so,
even though you're not trainedto manage it by medical school,
(18:59):
it seems.
Again, I've been a patient for25 years, so it seems like it
would be a normal part ofconversation, in the sense that
I have a disease that affectsthe pelvic area of my body.
And so why wouldn't that affecteverything that has to do with
the pelvic area of my body?
(19:19):
So that's why I'm like.
I always love it when doctorssay that, because I'm like okay,
first of all yes, thank you Getthe training but then also,
like.
Speaker 3 (19:27):
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 differenthuman emotions and human
physiologic parts of our bodiesas well.
So why do you need training tobe able to address sexual health
and sexual practices?
Is what you're asking, rightSort of.
Speaker 2 (19:49):
Or why does it have to be that specific training
Like?
I feel like when they say weweren't trained, it's always
going back to medical school andyou receive so much training
after medical school, right,Residency and fellowship and all
of these other things.
So, I love it and it also kindof makes me like giggle a little
bit on the inside because I'mlike, okay, we all, every other
profession you have to do, youknow training outside of
(20:11):
whatever you learned in schoolor whatever it's like you're
continuing to learn your job.
Speaker 3 (20:14):
You're so right, absolutely, and I didn't mean
just about not being trained inmedical school, but what I meant
is more about being able tohave this conversation and
trying not to show thediscomfort that you have while
you're having the conversation,because it's such a sensitive
and vulnerable conversation.
(20:36):
So we do have training.
A lot of times we get trainingabout having difficult
conversations or breaking badnews or talking about end of
life, aspects of training ordifferent themes and topics that
we get trained in in a way thatwe're not robots, that we get
trained in in a way that we'renot robots but at least for us
to like peel that band-aid andbe more comfortable once we're
(20:58):
faced with a real-life situationwhere we're having to deal with
these situations.
At least we would have done itin a more educational,
structured curriculum type ofsetting before we're in the
actual world, real-worldpractice of these conversations.
Because it's such a sensitivetopic Like, for example, end of
(21:20):
life, you don't want to bethrown into having an end of
life conversation with somebodyfor the first time without
having any training doing it ora framework to do it and then
end up saying something wrong orbad or hurtful at such a
sensitive time in somebody'slife.
Similarly with sexual health andsexual practices, you want to
(21:40):
at least have some form offramework or language and a way
to approach it that you becomecomfortable with addressing it,
that the first time you'readdressing it in clinic or the
multiple times you're addressingit in clinic, you would have at
least a framework you fall backonto in the way you communicate
with your patient, so that yourpatient knows that you are
(22:02):
somebody who is comfortable,confident and you are somebody
who they can come to and theycan 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 andthen your doctor starts fumbling
and dismissing it or moving onto another topic or start
sitting on their hands and justwobbling around as you're
(22:25):
looking at them and you're likewe're all human, like why aren't
you being normal about it?
Speaker 2 (22:30):
Why aren't you being normal I?
Would definitely say that.
What's wrong with you?
Why aren't you being normalright now?
Speaker 3 (22:35):
Right right, why aren't you being normal right
now and just answering myquestion?
But it's more about like,different people have different
levels of vulnerability,openness, and also different
levels of being reserved orbeing open or conversational, so
we cannot expect that everybodyreacts to different
conversations or topics in thesame way.
(22:57):
The most important thing is toremember that, just like you're
talking about poop in clinic andwe're comfortable and do it
like it's our second nature, wehave to channel that emotion of
oh, I'm comfortable, talk to meabout your poop all day.
Okay, let me channel that intohow I'm going to be talking to
you about all the other aspectsthat might be or might not be
(23:19):
comfortable, and also practicingdifferent frameworks or
different scripts that wouldallow me to become more
comfortable in bringing it up,because the patients might not
bring it up.
The majority of patients do notbring up sexual health and
sexual practices.
So I tend to ask all mypatients what do you do for sex?
Are you sexually active withmen, women or both?
(23:39):
What are different sexualpractices you engage in?
And I preface it by saying,because of IBD impacting every
aspect of your life, I want tomake sure that you are
addressing all the elements ofyour life that might be impacted
and some of them that you mightnot bring up to me.
I am bringing it up to you totell you that I am a safe space
for you to talk to me about thisand if you don't want to talk
(24:00):
about it this time, maybe nextvisit you can tell me more if
you want, and I'm happy toanswer.
And I do that about everythingelse.
I do that about how are youdoing, how's your mood doing,
how's your mental health doing,how are your relationships?
How is IBD impacting yourprogress and your career goals.
So it's like thinking aboutevery element, and we recognize
(24:21):
that not every provider hasenough time to spend that much
time with talking about yourdiagnosis, all the healthcare
maintenance needed, all thetreatment options or how you've
been doing on the treatments,and then to address all these
other very important aspects ofyour life that might be impacted
by IBD within a 15-minute visit.
(24:42):
It's impossible, but rememberthat we have a longitudinal
relationship with that patientand with that person and not
everything needs to be addressedtoday.
And these are things that youcould say cliffhanger.
On our next visit, how about?
We might also talk about yoursexual health?
Or on our next visit?
How about we might talk aboutyour career goals, because, oh,
(25:05):
you're in remission and you'vebeen doing great.
Let me maybe know you betternext time about other parts of
you that might be importanttowards your care.
So that's how I view it andI've familiarized.
Although I didn't have a formalcurriculum that I've gone
through.
I channel a lot of other ways,whether it's having difficult
conversation curriculum thatI've gone through before, or
(25:28):
having end of life conversationthat I've gone through.
I channel these frameworks intoother types of conversations so
that I've gone through.
I channel these frameworks intoother types of conversations so
that I have more openness, morevulnerability, more
authenticity with my patientsand being more comfortable
around these topics.
Speaker 2 (25:42):
New CE program led by Dr Victor Chedidi.
Just by being able to ask thequestion in a real and honest
way, you give your patientpermission being able to ask the
question in a real and honestway.
You give your patient permission.
You give them, whether they wantto talk to you about it or not,
where you're like the way thatyou asked that question, I was
like, okay, let's talk about it,I'm ready to answer that
(26:02):
question for you because it'sjust a real and honest way to
ask it.
And by you being willing to bethe first person to ask the
question, that gives yourpatient space to say like, okay,
I'm not ready to talk about itnow, but I could be ready to
talk about it in the future.
And also, I mean people aren'teven comfortable talking about
poop all the time.
I mean I've had IBD for 25years and my parents sometimes
(26:26):
will still say we don't, don'ttalk about that.
And I talk about poop everysingle day of my life.
It's such a big part of my life.
I never thought poop would besuch a big part of my life, but
it is.
And so I do really understandyou saying how sensitive the
topic is and how some people arenot comfortable talking about
it, because a lot of people inmy life don't even want to talk
about poop Right, which iseverybody poops.
Speaker 3 (26:49):
Everybody poops.
Speaker 2 (26:51):
At least once a day, hopefully.
If it's not once a day, youshould probably see a
gastroenterologist.
Speaker 3 (26:56):
No listen.
Speaker 2 (26:57):
I'm looking at you, Alicia.
Everybody has a difference.
Speaker 3 (27:00):
I actually think that a normal bowel movement
frequency is patient by patient.
Speaker 2 (27:06):
Some people might go every other day.
Speaker 3 (27:08):
Not necessarily once a day, Some people every other
day is normal for them and theydon't need to see a
gastroenterologist.
Speaker 1 (27:14):
I agree with Robin.
I do think the fact that youopen it up and you say it in
such a matter of fact way really, I think, does probably make
people feel a lot more confidenttalking to you about it.
But one thing you said is, likeyou know, talking like maybe
you're in remission and it's notbothering you, but I do think
there's been some people we'vetalked to that even when they're
in remission, this sort ofripple effects of of things like
surgeries still impact theirsexual health.
(27:35):
So can we talk a little bitabout like I would imagine that
if gastroenterologists aren'tsuper great about talking about
this, I would imagine surgeonsdon't get gold stars either,
maybe even less gold stars.
So, you know, can we talk alittle 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.
(27:56):
Like how are you talking tothem about the potential
ramifications of what this maydo for them in lots of ways and
including sexual health?
Speaker 3 (28:05):
Yeah, that's a great point and I have to preface it
by I love our colorectalsurgeons.
They're tremendous and I have alot of.
Them are my friends on directcall.
We go back and forth thinkingabout ways to better improve our
patients' care.
We recognize we're all part ofa multidisciplinary team of
advocates and caregivers andproviders who are putting that
(28:29):
patient in the center ofeverything.
And so I've had discussions alot with a lot of my colorectal
surgeons and so I've haddiscussions a lot with a lot of
my colorectal surgeons and someof them actually I noticed that
patients go to them about sexualpractices before they come to
us and ask us especially ifthey're undergoing a pelvic type
surgery, like a total colonremoval with a J pouch formation
(28:51):
, or they're having their entirecolon removed with the closure
of the anus or what some peoplemight call a barbie butt.
So the patients would many atimes go to the surgeon to ask
about sexual practices.
When is it okay for me to havesex?
How is it safe for me to havesex or not?
Is it safe for me to havepenetrative vaginal or
(29:14):
penetrative anal sex when I havea J pouch?
Will my J pouch surgery impactmy ability to have an erection
if somebody has a penis.
So so many questions that theygo to the surgeons.
Some of it has been studied,like I said, in a
heteronormative cisgender lens.
Studied, like I said, in aheteronormative cisgender lens.
(29:38):
But, like the aspects of analreceptive intercourse or anal
sex in folks who have hadJ-pouch surgery, for example,
this has not been studiedsystematically so we don't have
evidence-based data to guide ourpatients on.
Is it safe?
Is it not safe If the pouch washand-sewn versus was stapled?
(29:58):
Does it have better complianceif it was hand-sewn and you're
able to engage in anal sexbetter?
Or the rectal cuff is a littlelonger versus shorter, does that
have any difference on anal sex?
And that's where I brought upthe fact that having that
conversation prior to surgerywith a patient might modify how
(30:20):
the surgeon might want toapproach the surgery in a way or
another, and not that there isagain a lot of data to support
which way to go with the surgery.
But it might help the surgeonmaybe create a little larger
pouch if a patient is engagingin anal receptive intercourse or
giving them counseling on whenit would be safe, which, again,
(30:43):
we don't have data, but assumingthat if the pouch healed and
now it's normal.
You don't have issues withpouchitis or stricture or
narrowing at the site of thesurgery, then I don't see why
not.
If you're practicing safeapproaches to anal penetration
or anal intercourse, I don't seewhy not.
(31:04):
Why can't you individualize theapproach to that specific
patient?
Okay, you've not had any issueswith pouch inflammation or
pouchitis.
Your pouch anastomosis orsuture area is flexible.
So if you use a lot of lube,take it slow.
Know what's good pain, what'sbad pain, know when to say stop,
(31:25):
when to say go.
Have that mutual communicationwith your partner and engage
with your partner, involve themin your care if you want to.
You can involve them as much asyou want or as much as you
don't want.
And not everybody we cannotassume everybody is in a
monogamous relationship.
Some people have multiplepartners, can be polyamorous or
(31:47):
can be in open relationships orthere are a whole variety of
sexualities and sexualexperiences that we have to
honour and understand and beable to guide that specific
individual based on who they are, how they navigate life, they
navigate their sexualexperiences and sexuality and
navigate that surgery approach.
(32:09):
So there isn't a one glove fitsall, but that's the importance
of having that sit down andcommunication and leaning in and
listening and trying to betterguide that person.
If somebody ended up acquiringclosure of the anus with the
quote unquote Barbie butt, thatperson will not be engaging in
anal receptive intercourse.
And that'd be important to havethat conversation with that
(32:32):
person before.
Because for many people not onlygay men engage in anal
receptive intercourse.
It is a very common practicethat we don't ask about, but we
know that a lot of straightwomen, straight men, lesbian
women, gay men, trans person,every type of person might
engage in anal intercourse.
And so by leaning in and askingand knowing your patient better
(32:56):
, you would know what are theirsexual practices and you would
be able to counsel themaccordingly to what is
appropriate for them.
And also many people might feelthat this is part of their
identity when they engage inanal intercourse.
Within the gay community, forexample, some people are
exclusively what they callbottoms, so they only engage in
anal intercourse and they'reonly on the receiving end.
(33:18):
So if that person is going tobe losing their rectum, they
might be losing part of theiridentity and their sexual
identity and that might have abig impact on somebody's morale,
on somebody's mental health andhow they navigate life, and so
that's where, again, thecommunication is key.
Having these conversations iskey.
Speaker 1 (33:37):
Yeah, that would be a tough one.
That would be a toughconversation to have with
somebody because you're right,if that is such a big part of
their life and a big part oftheir sexuality, then that's a
hard conversation, right.
Speaker 3 (33:48):
Absolutely, and again , that's why I channel my
training in difficultcommunication and conversations.
Speaker 1 (33:53):
Yeah, yeah, so I'm guessing that there's a very
significant lack of literaturearound caring for the
transgender and sort of genderdiverse community, you know,
because it seems like therewould be a lot of hazards around
this.
You know you're having a doctorkind of downstairs is for
anybody is uncomfortable, buthaving that for somebody who
(34:14):
perhaps is really again is notin this cisgender pool, it feels
like there there would be a lotof potential folks that might
be dealing with some medicaltrauma, some medical gaslighting
that may have happened and somereal discomfort with getting
care.
Is there any research on that?
Like I kind of assume theanswer is no, just because you
said there are some people thatavoid care because of kind of
(34:36):
bad experiences and because of,you know, having doctors that
may have asked questions thewrong way or made assumptions.
So is there any research onthis and is there a way that
doctors can maybe, like thedoctors that are not you, who
clearly do this very well, couldbe better equipped to work with
people that are part of thetrans community?
Speaker 3 (34:55):
better equipped to work with people that are part
of the trans community.
So there isn't much research onit in IBD, on the trans
community specifically in IBD.
There are a couple of papersthat recently were published
more on the impact ofgender-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 monthsago.
(35:15):
It was led by Dr Audrey Bennettand that study looked at the
impact of gender-affirminghormones on transgender folks
who have IBD one year prior toinitiating gender-affirming
hormones and one year pastgender-affirming hormone
initiation.
And our aims were to look atrates of flare after initiating
gender-affirming hormones andwhat was interesting in our
(35:37):
study is that we showed thatthere wasn't an increased rate
in general.
Overall there wasn't anincreased rate of flares when
you initiate gender-affirminghormones in this community.
But there was one signal, fortestosterone maybe can result in
a slight increase in risk offlaring in a transmasculine
community.
But that does not mean I cautionthis, with multiple cautions is
(36:00):
that gender-affirming hormoneis life-saving care and
life-saving treatment andtherefore it should never be
that we're blaming something onthe gender-affirming hormones
and make the person stop that,because we recognize that when
somebody is on their journey oftransitioning, they have gone
through a lot to reach to thatjourney.
(36:21):
It's not something that'sovernight that somebody decides
to transition.
It's something that has been,that the person has gone through
a lot to reach to that pointand so by the time they've
reached that point, we know thatgender affirming hormones has a
great impact on somebody'sgender dysphoria, on somebody's
mental health.
Risk of suicide is decreasedafter somebody starts gender
(36:45):
affirming care and genderaffirming hormones and therefore
, as an IBD doctor, my roleisn't to play the broken arm
syndrome or always blaming thegender-affirming hormones on any
flair that that patient mighthave thereafter.
My job is to acknowledge thatthis person is in a much better
place now that they'retransitioning and they're living
(37:05):
their authentic self andauthentic life.
And how am I going to navigateor help you navigate your IBD
around that?
And so, with our study, when wesaw that there was a signal
with testosterone somebody who'sstarting on testosterone I
might have a more closemonitoring on their IBD in the
year after initiatingtestosterone just to make sure
they are safe and remain inremission, and if there needs to
(37:29):
be any minor adjustments totheir IBD treatment, I would
definitely do that, so that isimportant to keep in mind.
With that said, you brought upvery important points that the
trans community, but also peoplewho have IBD, have experienced
medical trauma gaslighting,dismissal, delays in care and
all those things.
(37:49):
More so the trans community,for sure, but what I'm getting
at is that I approach every IBDpatient, but more so the LGBT
community and specifically thetrans community, with
trauma-informed care, and thatmeans I assume everybody might
have some level of trauma.
And every step of the way I amapproaching that person with a
(38:11):
great degree of sensitivity,giving them step-by-step what
we're doing, pros and cons ofwhy we're doing it.
Specifically, within GI, a lotof our exams involve an anal
exam or a rectal exam involvesendoscopies that involve around
the genital area.
So making sure you're verysensitive around that and
(38:31):
informing the patients thebenefits and risks of a rectal
exam why am I doing it, why isit necessary in your particular
case and giving them the powerand the empowerment to say, no,
I don't want to get a rectalexam.
I recognize the risks andbenefits, but I'm not engaging
in it today or maybe next timeor never, and I respect that.
(38:51):
My job is to make sure that Iinform the patient about the
risks and benefits.
Why am I doing something andthey consent to it or not.
So, again, the trauma-informedapproach is extremely important
in any approach, whether inclinic or in endoscopy.
Making sure that when you'reexamining the pelvic area
(39:11):
particularly the anal exam orrectal exam that you reassure
somebody who might beexperiencing gender dysphoria
the transgender folks thatyou're not going to be exposing
their genitals to the entireroom in endoscopy and that their
genitals are going to always becovered.
But I do that for anybody.
I make sure that your genitalsare covered at all times during
(39:32):
your colonoscopy because we makesure that we're just exposing
the part that we need to exposewhen we're doing your
colonoscopy to make sure that weare doing the good exam, the
right exam, without exposing youbeyond.
That needs to be exposedbecause of how vulnerable this
type of exam is.
So if every gastroenterologistapproaches every patient with
(39:53):
IBD with such a trauma-informedframework, particularly in the
LGBT community and specificallythe transgender community, it's
going to take them a long way intheir patient rapport, in my
opinion.
Speaker 2 (40:04):
I have to take you back to the hormones for one
second, because this is apedestal that I get on a soapbox
.
So there is evidence and pleasecorrect me if I'm wrong that
biological females' hormonesaffect their IBD already.
So do you think that thegender-affirming care plays a
(40:27):
similar role for biologicalfemales, and it's not just
because it's for this purpose?
We already know that hormonesaffect biological females, so do
you think that that is part ofit?
Speaker 3 (40:40):
I think so.
Yes, the answer is yes becausewe know from studies in
cisgender females that estrogencan have a pro-inflammatory
element and can make IBD flaresworse.
And what we were interested inis to see the rates of flare in
the transgender community priorand post starting
(41:01):
gender-affirming hormones,whether it was estrogen or
testosterone.
And what I said is that therewasn't an increased rate of
flare prior and post.
And recognizing that was aretrospective study from a chart
review study.
It's not a clinical trial withprospective follow-up and a
randomized blinded control trialapproach.
It's a chart review study thatis impacted by biases that could
(41:25):
be from the chart, extractionand missing data and all that.
But recognizing that this isthe only evidence we have right
now and it is important evidenceto drive that message, it
doesn't dismiss the fact that weknow from biological studies on
lab studies, like on mice andalso on humans, that some of the
(41:48):
gender hormones, like estrogen,testosterone, estrogen
specifically can have morepro-inflammatory effects on IBD.
Speaker 2 (41:56):
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, Iassumed you were going to ask
that question, Robin.
Speaker 3 (42:05):
Yeah, and many, many folks when they're having their
menstrual cycles they noticemaybe that their IBD can flare
around their menstrual cycles Inpregnancy.
We know that if somebody hasactive IBD at the time of
conception, their IBD if it'sactive at the time of conception
, there's a two-thirds chance ofthe IBD getting worse or
staying the same during thepregnancy and one-third chance
(42:29):
of the IBD getting better, whileif the IBD is in remission at
the time of conception, theirchances of the IBD staying in
remission throughout thepregnancy is around two-thirds
chance.
So that's why a lot of ourcounseling when somebody is
interested in prenatalcounseling with IBD, we do
counsel about the importance ofachieving remission prior to
(42:49):
conception.
Speaker 2 (42:51):
I think that it's not across the board.
Estrogen, progesterone,testosterone Again, I am not a
scientist, I am just a patientwith lived experience.
I just feel like it affects IBDmore than anybody really knows
and I would hate for somebodynot to get the gender-affirming
care that they so richly deservebecause of fear of a flare when
(43:15):
that is like when hormones arecan affect, no matter what, I
see what you're saying.
I'm starting to tear up rightnow, just saying that, like I
just I think that I think thatwould be a huge disservice
because it's the hormones affectus all, no matter what our
biological gender is how weidentify.
It affects our IBD, no matterwhat.
Speaker 3 (43:35):
Right and again that comes from a place of
recognizing that a trans persondoesn't come to the beginning of
their transitioning journeyovernight.
They've gone through a lot tillthey've reached that beginning
of their journey and the persontreating them might have
implicit biases against thatcommunity.
Specifically, and when they'recounseling for stopping gender
(43:58):
affirming hormones, they mightbe thinking they're giving them
out of their best interest rightLike I'm telling you to stop
this because I'm trying to giveyou what's in your best interest
but that might be fraught witha little unintentional implicit
bias of oh, you're doing this toyourself, you don't need to
transition, and that's not theway we should be approaching
(44:21):
somebody who have reached thebeginning of their transitioning
journey, which is a big dealfor somebody, and this is an
amazing thing when somebodyactually gets to start living
their authentic self.
Speaker 1 (44:32):
Well, and I don't know, it just reminds me of like
there's risk in treatingeverything you know the
medications.
Yeah.
So I mean like this this riskof taking a you know a hormone
in causing a flare is I don'tknow.
I kind of akin to like saying,okay, don't take a biologic
because there's a tiny chancethat you may develop cancer,
(44:52):
kind of thing.
It's like well, one of thedoctors are really saying, well,
don't take a biologic becausethere's this tiny chance you may
develop cancer, kind of thing.
And it's like, well, one of thedoctors are really saying, well
, don't take a biologic becausethere's this tiny chance you may
get cancer.
So I don't know, to me it'slike you're going and you're
saying one thing but you're likethe other one is basically akin
in my mind.
Speaker 3 (45:05):
That's a great point, alicia, that you just made, so
thank you for making that point.
We always talk about risks andbenefits of everything, so why
do we not see it the same waywhen we're counseling somebody
who's transgender andtransitioning?
Speaker 1 (45:18):
Yes, I know.
One of the other studies that Iwas looking at when I was
looking you up is that youculturally sensitive practice.
Speaker 3 (45:24):
Yes.
Speaker 1 (45:25):
I'm curious especially how that layers in
with also working with LGBTQIplus community.
I would imagine there's somedistinct differences in kind of
how you might work with somepeople, some cultures.
I don't know this, but I kindof assume that layering in sort
of some cultural differencesmight also make this a very
different conversation you mightbe having with people, or like
(45:47):
it might be that there's thefamily is involved and what
happens if the whole family's inthe room and how are you
talking about sexual practiceswith dad sitting next to
somebody you know so curiousabout all of that.
Speaker 3 (45:58):
So in that paper we actually explored the concept of
cultural sensitivity in IBDcare and, in specific, what you
just defined is calledintersectionality
intersectionality of identity,and so that means that if
somebody is gay, it doesn't meanthat they're just gay.
It doesn't mean that everythingthat applies to one gay person
(46:18):
applies to all gay people andyou can just go on treating
every person the same way entity, and that includes what their
race is, where their nation oforigin is, what their
immigration status is, whattheir ethnicity is, their gender
(46:41):
, their sexual orientation,their household income,
educational status All of thatintersects to make that one
human being.
So each aspect that I justmentioned has a different impact
on that person's journeythrough their healthcare
experience or their IBD journey.
(47:02):
Which means that if somebodybelongs to the LGBTQ community
and I don't want to put it allin one bucket because I want to
get a little more nuanced hereIf somebody is cisgender male,
gay and Indian, of Indian originand born in the United States,
so that person is American andalso medical student.
(47:27):
That person's lived experienceis very different than a
cisgender male, gay, but Indian,born in India and a medical
student.
And in order to betterunderstand the experience of
that one first person that Igave you as an example.
To that second person you haveto lean in and to have more
(47:48):
cultural sensitivity andunderstanding, because if I
assume that, oh, they're both ofIndian origin and therefore
they might believe the samethings and have the same lived
experiences, then I've made somany biases and shortcuts that
have completely done both ofthem a disservice and I've
approached their care in a waythat is not helpful for either
(48:10):
of them.
So what I always do is try toleave my biases at the door
before I walk into the room, andI always try to check with
myself what are my biases, andso I try to listen to that
person.
Tell me about your livedexperience.
How is it being American, bornof Indian origin, being gay and
(48:33):
having IBD versus?
How is it for you, who is mayberecently immigrated to the
United States and navigating theimmigration system along with
navigating everything else,living with IBD as well?
And so the insurance, forexample, access for that one
person might be very differentthan the insurance access for
that person, and I might need togive more resources to that
(48:54):
person who's navigating alsotheir immigration status and
their identity.
They might not be fully out,they might be half out to some
friends, but not to theirparents.
And again, it's all aboutknowing that person in front of
you so that you would be able totailor the care for that one
person here versus the care forthat person there, so that you
(49:15):
would get the best outcomes foreither of them.
You cannot just blanket makeassumptions and blanket
prescribe different medicines,assuming that everybody is going
to have the same experience.
And so that's where culturalsensitivity comes to play, and I
hate the word culturalcompetence, which I've heard in
(49:35):
many historic trainings wherethey say oh, we're going to do
cultural competence training andthis is a major assumption that
you're assuming you'remastering the care of all
different cultures and you'recompetent.
Nobody's ever going to becompetent in anything culturally
related because there's layersand layers and layers of nuances
(49:58):
.
So that's where culturalhumility is a better approach.
Cultural sensitivity andhumility where I acknowledge
that I don't know a lot, and oneof my mentors that I quote a
lot.
He says in our current state ofignorance, because we know a
lot, we study a lot, but there'sway more that we don't know,
(50:21):
whether in medicine and ourmedical knowledge and also in
our cultural knowledge and inour approaches to human beings,
and so that's where I sayapproaching people with more
cultural humility, leaning inrecognizing intersectionalities
of identities, leaning inrecognizing intersectionalities
of identities, leaving yourbiases at the door as you're
talking to people, is a greatapproach, in my opinion, that
(50:42):
you should incorporate in yourIBD care.
Speaker 2 (50:44):
I'm really sad that I have to ask you the last
question, because I feel likethat even that answer to
Alicia's last question, I'm likeokay, I have three more
questions that I want to ask youbut we've already been talking
to you for more than an hour.
Speaker 3 (50:57):
It's been so fun.
Thank you.
Speaker 2 (51:00):
I adore you.
Speaker 3 (51:01):
J'adore.
Speaker 2 (51:02):
Completely, and what is the one thing you want the
IBD community to know?
Speaker 3 (51:07):
Well, I thought a lot about this one and I think I
settled on the one thing, and Iwould like to say that people
living with IBD are the expertsof 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 compassionatecare when you trust their voice,
(51:28):
it is clinically sound practice.
I think patients with IBD aremore than just their diagnosis.
I think patients with IBD aremore than just their diagnosis.
They have their intersectionalidentities and to truly care for
them, we must embrace theirfull identity clinically,
culturally, personally and buildcare models that are inclusive,
affirming and responsive totheir lived experiences.
(51:50):
And that's all.
Speaker 2 (51:51):
Trust and believe.
I have said that.
Listen and believe.
Believe your patients when theytell you.
Believe your patients when theytell you.
Speaker 3 (51:57):
Believe your patients when they tell you Like many
times the patient is telling yousomething is off, because
something is off.
It might not be that there'sreally high inflammatory markers
or active inflammation.
It might be something else thatyou want to explore with them
and try to better understand,because many times I see people
cycling through biologics whenin fact their disease has been
(52:19):
quiet for a long while andthey've been responding to that
initial biologic.
But every time a patient comesin with I feel off or something
is wrong.
The first go-to is to changethe treatment when in fact it
could have been an issue withpelvic floor dysfunction or
abdominal wall pain or somethingrelated to their gut brain
access, where their mentalhealth or SIBO, like so many
(52:42):
things, that yes, so no.
That's, that's the truth, andso that's why I say believe your
patients, but also try toexplore things outside the box
to be able to better serve themyeah, I think, especially since
there is it's not like we have abajillion treatments for
inflammatory bowel disease.
Speaker 1 (53:00):
You know there's there's a limit, and so you're
right, cycling through thedifferent medications is a bit
dangerous, because then whathappens if you get to the end of
the line?
Speaker 3 (53:10):
Right, yeah, yeah.
Speaker 1 (53:11):
Right, but also the more important is listen to your
patients.
That is the perfect response tothat question.
And maybe we have to stop askingthe question because I don't
know, I think you just droppedthe mic on everybody, and so it
has been such a pleasure to haveyou on the show.
We've really, really, reallyenjoyed our conversation and we
just are so impressed with thework that you're doing.
It's so important anddefinitely life-changing
(53:33):
life-saving for people, I think,in a lot of ways.
So thank you for that and thankyou everybody else for
listening to the show and cheersguys.
Speaker 3 (53:41):
Cheers, cheers, cheers.
Thank you for having me.
Hi, this is Victor Shadeed, andif you enjoyed this episode,
please rate, review, subscribeand share with a friend.
Hi, I'm Alicia and I'm Robin, and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week, robin and I had thegreat pleasure of talking to Dr
Victor Shadeed.
Dr Shadeed is agastroenterologist and associate
professor at the Mayo Clinic inRochester, minnesota.
(00:22):
He's also the director of theirPride Clinic and has a special
interest in researching healthdisparities in inflammatory
bowel disease, particular to theLGBTQI plus community.
We had a really, really greatconversation with him, talking
all about inclusive care ofindividuals part of the LGBTQI
plus community and also a lotabout how doctors can get
comfortable talking to theirpatients around their sexuality.
(00:43):
So just a fair warning toeverybody that we do get in
depth and talk about sexualpractices in this episode, so it
may not be appropriate foreverybody, but we think you'll
find this conversation just asfascinating as we did and we
hope you'll get as much from itas we did.
Cheers.
Speaker 2 (01:01):
Hi everybody, Welcome to Bowel Moments.
This is Robin.
Speaker 1 (01:04):
Hello everyone, this is Alicia and we are absolutely
delighted to be joined by DrVictor Shadeed.
Dr Shadeed, welcome to the show.
We are really excited to hearall about you and your work, but
our first, very unprofessionalquestion is what are you
drinking?
Speaker 3 (01:18):
Well, hi, robin and Alicia, I'm so happy to be here
and I'm still at work, so it isa boring iced coffee and the ice
has melted, so I'll continuedrinking it, and it's still cold
, so that's good.
Speaker 1 (01:32):
It's just watery coffee now, unfortunately.
Speaker 3 (01:33):
It's watery coffee now Still does the job, though.
Speaker 1 (01:40):
I hope so, Robin, you're probably drinking coffee
too.
You're a big coffee in theafternoon woman as well.
Speaker 2 (01:46):
I am.
I debated on getting a freshcup but I'm actually drinking
flavored sparkling water on TopoChico.
But I have a lime and mint TopoChico.
Speaker 3 (01:56):
Oh, I've been wanting to try those yeah.
Speaker 1 (01:59):
They're good.
We're big fans of Topo Chico.
However, Robin, I could havesworn that last time we talked,
you made a comment about notdrinking as many bubbles.
Speaker 2 (02:07):
Yes, that is true, and I will regret this later.
That is true.
Speaker 1 (02:12):
Robin's day.
Pouches doesn't love thebubbles, unfortunately.
Speaker 2 (02:15):
No, well, I think it was the SIBO that didn't like
the bubbles, and then it was.
I took antibiotics and I wasbetter and now I feel like
probably coming back.
I probably will be messaging mydoctor after the show actually,
so like, hey, I think the SIBOis back, but I really.
They're delicious and it'sworth it.
It's just one day, it's justone bubbly beverage.
Speaker 3 (02:38):
Hey, you deserve the joy of one bubbly beverage.
I would give that to you.
Speaker 1 (02:44):
Yes, that's right Doctors orders Robin.
Joy of one bubbly beverage.
I would give that to you.
Speaker 2 (02:49):
Doctor's orders Robin .
Speaker 1 (02:50):
I like it.
What about you?
Dr Chidi is not providingmedical advice.
This is not what's happening onthe show?
Speaker 3 (02:55):
Absolutely not.
We're here as friends havingcoffee.
Speaker 1 (03:03):
I love that.
That's perfect.
Well, I am also drinking bubblywater as well, robin, but I've
got a San Pellegrino Essenza andthis is their kind of their
Topo Chico-ish.
This one is blood orange andblack raspberry.
It's nice, it's nice.
Why are bubbles bad with SIBO?
Speaker 3 (03:14):
So it's more about the bubbles causing bloating,
and when you drink more bubblesyou're going to have more
bloating and SIBO gives yousymptoms of bloating.
So when somebody has SIBO andthe bubbles won't cause SIBO but
would just make your bloatingworse, and so many a times when
I see a patient with isolatedbloating we can't identify other
(03:37):
causes of their bloating.
Part of the lifestylemodifications that we discuss
and part of the plan that wediscuss is to avoid bubbly
drinks, to avoid sipping out ofa straw and to avoid gulping.
So these are all little tricksthat you would do to help just
reduce the symptom of bloating,which sometimes is one of the
most difficult GI symptoms totreat, as maybe Robin can attest
(04:00):
.
Speaker 2 (04:00):
And my bloating is painful.
Not everybody has painfulbloating but mine is very
painful.
Speaker 3 (04:07):
I'm sorry.
Speaker 1 (04:08):
The next official question for you is tell us your
IBD story.
What brought you into ourcommunity?
What made you decide to becomea GI doctor?
Speaker 3 (04:15):
So I go back to when I was in medical school at the
American University of Beirut inLebanon.
That is where I grew up.
Also, I know that a ton ofpeople all around me one of
their first things that theyshare whenever they know I'm a
doctor is GI symptoms.
It's like right away you meetthe person and GI symptoms is
(04:35):
their first thing they want todiscuss with you.
Even when I was a medicalstudent that was what people
would want to discuss and I usedto like find it intriguing,
because all of us eat, all of usexperience a lot of variations
of GI symptoms, a huge array ofit, and everybody in our
lifetime has had one or anotherGI symptoms at different,
(04:58):
varying degrees, differentseverities, different
frequencies and all that.
So there's that.
So I got intrigued by thephysiology of the
gastrointestinal tract andstudying that in med school.
And then as I progressed andwent to the end of med school,
trying to decide whatspecialties I want to go to, I
knew that I am somebody wholoves to do procedures but also
(05:20):
loves to take care of a patientholistically in clinic.
So with that it was a sort ofin-between for me in my mind
between gynecology andobstetrics or gastroenterology
or internal medicine and thengastroenterology.
So I actually went through theprocess of applying for
(05:40):
obstetrics and gynecology.
I thought I have it in me to bethat person, and then I did all
my application for obstetricsand gynecology.
I thought I have it in me to bethat person and then I did all
my application for obstetricsand gynecology, went through
sub-internships as part of mytraining in OB-GYN here in the
United States.
So I traveled from Lebanon formed school.
I did a couple of months here inthe United States observing and
(06:01):
working with OB-GYNs and at thesame time was applying for that
residency training and I couldnot see myself in it.
I hated it.
I felt that this is not theright fit for me.
So I actually withdrew from theOB-GYN application process and
the match and I pivoted myentire career towards internal
(06:25):
medicine, knowing that I want tothen proceed to
gastroenterology.
So then an opportunity came upwhere I got an award to go to
Johns Hopkins University to doresearch and over there I was
mentored by an amazing mentorwhose name is John Clark.
He mentored me on a lot ofresearch approaches for motility
(06:47):
disorders and I thought thatwas really intriguing and
interesting.
And then I moved on forresidency to the University of
Pittsburgh and the University ofPittsburgh was well known as an
IBD center.
At the time I was there, therewere great people in IBD there
Dr David Binion, dr MiguelRuguero, dr Jana Hashash so all
(07:08):
these folks.
I was still a little internresident in internal medicine
and my eyes were excited aboutall the work that they've been
doing and I started working onresearch with them.
My research was focused onpsychiatric elements related to
IBD.
I looked at depression, anxiety.
I looked at suicidality in thatpopulation and that broke my
(07:29):
heart, recognizing that IBDfolks are folks who are
diagnosed at a younger age.
It was people who are my age,going through all these
different life milestones andtransitions as they're
navigating a chronic illness ata young age, and I saw the
resilience in this population.
I saw how they are allexcellent, excelling in their
(07:52):
life despite this big burdenthat has been put on them, and I
felt that this is my callingand that's where I moved on to
GI fellowship at Mayo Clinic andknew that I want to pursue IBD.
I also did research in motilityand IBD and then I moved on as
I joined staff at Mayo Clinic tolook at more health disparities
(08:17):
and health equity in the IBDcommunity, particularly in the
LGBT community.
Speaker 1 (08:22):
So that's where I am now how beautiful that story was
, though I love that this is thecareer that spoke to you.
I mean, that's really wonderfulto hear.
Speaker 3 (08:30):
Yeah, it remains to be a mystery in many ways of
things that we don't know aboutdifferent aspects of how we
treat IBD, how it manifests, thedifferent layers of it that
we're still all peeling andtrying to figure out together.
I love the community we have inthe IBD world, where it's a
(08:50):
community that is involving notjust the MD and that's it.
In fact, I learn more from mypatients, I learn more from
patient advocates than I wouldlearn from a colleague many a
times.
I learn more from havingconversations and there are so
many nuances that it's not donein one way and that's it.
There are so many differentways that approaching so many
(09:13):
different aspects of IBD careand it's such a rewarding and
privilege to be part of thatvillage or part of that
community advancing caretogether.
So I love that part.
Speaker 1 (09:24):
And we love that.
You love it because I thinkhaving providers like you who
really like take that approachto it and really feel that
deeply about the patientcommunity, I think is really,
really important.
I mean, you're the type ofdoctors that I think make a
difference in the care and workpassionately to make sure that
we're trying to figure out howdo we really treat people well
while they're coping with this,while also trying to figure out,
you know, what's the cause andhow do we cure this.
(09:46):
So I think that makes me happyto hear Thank you.
I think one of the aspects thatI find really, again, really
lovely about this is that youknow, in your search, in your
sort of research specifically ondisparities and making sure
that, again, our entirecommunity really feels supported
and treated by the healthcareprofessionals, you have focused
a lot on, you know, kind of thehealth disparities specifically
(10:08):
around the LGBTQIA pluscommunity.
So talk to us a little bitabout how did you sort of start
down that path.
It sounds like that kind ofcame as you kind of got later in
your career.
But talk to us a little bitabout kind of how did you get
started on that?
And then I know you have hadsome studies that I've found
that really talk about someaspects of you know, providers
providing care to this communityand how things could be
(10:28):
slightly slightly different.
I think that's maybe slightlyis not the right word, but could
be different and could be moreinclusive.
Speaker 3 (10:33):
Absolutely.
Yeah, alicia, thank you forthat question.
Explore the needs of the LGBTcommunity within the IBD
community by talking to peopleand talking and leaning in and
learning about my patients,learning about the people I'm
caring for or I'm having theprivilege to encountering, and
(10:57):
I've had so many patients whocome to our clinic and they
share with me their life stories.
They share with me their winsand successes and their downs
and difficulties and throughthat I have encountered many
folks who belong to the LGBTcommunity who I felt experienced
(11:19):
maybe a little more challengesor obstacles as they navigated
their IBD diagnosis as well thanother folks.
Not dismissing or diminishingthe experiences of others, but I
felt that the lived experiencesof the LGBT community might
have been a little morechallenging.
Or many times many IBD patients,regardless of their sexual
(11:41):
orientation or gender identity,feel that their providers are
either dismissive or they mighthave a delay in diagnosis.
Symptoms can be quitenonspecific.
Many times that lead to testingafter testing or provider after
provider until finally oh yeah,you had Crohn's disease.
(12:01):
All along, and from the LGBTcommunity, they might fear
seeking care because they fearof the stigma they might
experience at a provider'soffice or they might feel that a
provider's office might not bea safe space for them or they,
if, let's say, within the LGBTcommunity.
Some folks might be more quoteunquote straight and cis passing
(12:25):
, 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 isheartbreaking and not right at
all, because the first thing wedo when we get our medical
(12:46):
degree is we take ourHippocrates 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 andour clinics and have to create
(13:06):
that safe space for all ourpatients to feel that they can
come to us for their needs.
And unfortunately, the systemsthat have been built over time
have overlooked the LGBTcommunity, and when the systems
were built they didn't have thatcommunity specifically in mind.
And so in our current state, weare faced with places that
(13:32):
might stigmatize against thatspecific community,
unintentionally or intentionally.
And if you're dealing with IBDsymptoms, you might be delaying
your care because you're fearingto show up to the doctor's
office or fearing to bestigmatized against and that
might lead to worse outcomesrelated to your IBD.
And that, again, was one of mydriving forces of speaking up
(13:56):
about this specific communityand advocating and creating
spaces that are more inclusiveand creating approaches that are
more inclusive in the LGBT IBDcare.
Speaker 1 (14:09):
I agree.
I think that's so importantbecause I think just in the
conversations we've had in pastwith past guests, past shows,
talking about sexuality isuncomfortable period.
But it does seem like in theconversations from the
provider's perspective, likethey were like, yeah, it's
difficult for me to talk aboutit.
I'm uncomfortable talking aboutit seems to be to be to the
(14:35):
cisgender community.
It's like there's sort of it'salmost like it sort of defaults
there.
It's like the only way I canthink about it.
And so I think it is interestingand important to try to figure
out how do we communicate, how Ado we get the medical community
, the GI providers, to be morecomfortable discussing sexuality
?
But also, how can we sort ofmake sure that we're
communicating that interest inthat aspect of the person's life
and how that may impact theirdisease or how their disease may
(14:56):
impact it?
And how do we communicate thatin a way that is more inclusive
and open instead of sort ofalmost feeling like the default
is kind of to the cisgendercommunity?
So I think that's superimportant.
I mean, that's one of thestudies I told you I wanted to
ask you about before we startedwas that there was a study that
you were part of that, wherethey talked about like 95, I
think it was 95% of theproviders that you talked to all
(15:17):
said yes, it's absolutelyimportant to talk about
sexuality, and especiallysexuality to the LGBTQI plus
community, but only 27% of themactually did it.
Speaker 3 (15:28):
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 andcomfortably address different
aspects of sexuality, sexualdesire, sexual practices and
(15:50):
sexual activities, activitiesand all those extremely
important things.
Because at the beginning of thetalk of our conversation I was
telling you how we have to takecare of a patient holistically,
and when we're thinking aboutsomebody holistically, we're
thinking about multiple or allaspects of their life and how
(16:11):
IBD can affect every singleaspect of their life and we have
to better understand how IBDhas impacted every aspect of
their life and how can we, asIBD providers, give that person
different resources, empowermentto address the different layers
of how IBD impacts one's life,including their sexual health,
(16:35):
sexual activity, sexualpractices.
There's a good amount ofliterature out there that
describes the fact that IBD canimpact folks' sexual drive or
libido, or it can impact theirability to have sexual
performances.
A lot of the studies werelooked at in a cisgender,
(16:56):
heteronormative lens and not anexpansive queer-inclusive lens.
So a lot of these studies aremore about individuals having
issues with erectile dysfunctionor decreased libido, but not
expanding beyond that ondifferent sexual practices and
so many times when somebody whodoesn't just fall into the
(17:20):
heteronormative cisgender bucketcomes to clinic and asks about
any types of sexual practices oractivities that are beyond the
sorry missionary intercourse, weall get uncomfortable and we
have a hard time addressingtheir concerns.
Patients can read our bodylanguage.
They can read our discomfortand it's such a vulnerable
(17:43):
conversation when you, as apatient, are sharing this with
your provider and asking aquestion about it.
It because many patients do notdisclose or share or ask these
questions, knowing that theymight not have a satisfying
answer or they might be faced bysquirms or moving around in
your chair, being uncomfortableto respond or dismiss dismissal.
(18:05):
So, with that said, the factthat patients do not share it,
doctors or providers aren'tcomfortable discussing it or
having well-informedconversation about sexual
practices and sexual health.
It ends up being an unaddressedneed for patients to talk about
(18:25):
.
They might end up reaching outto friends asking about this or
their partners, or maybe socialmedia and online forums, but not
well-informed, medical,evidence-based approach to
sexual practices with IBD.
Speaker 2 (18:38):
Okay, we have had a couple of physicians on the show
that have said this, and I'veheard it out in the wild too,
where doctors say we are nottrained to do that in medical
school, and sometimes I wonderbut you are a human being so,
even though you're not trainedto manage it by medical school,
(18:59):
it seems.
Again, I've been a patient for25 years, so it seems like it
would be a normal part ofconversation, in the sense that
I have a disease that affectsthe pelvic area of my body.
And so why wouldn't that affecteverything that has to do with
the pelvic area of my body?
(19:19):
So that's why I'm like.
I always love it when doctorssay that, because I'm like okay,
first of all yes, thank you Getthe training but then also,
like.
Speaker 3 (19:27):
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 differenthuman emotions and human
physiologic parts of our bodiesas well.
So why do you need training tobe able to address sexual health
and sexual practices?
Is what you're asking, rightSort of.
Speaker 2 (19:49):
Or why does it have to be that specific training
Like?
I feel like when they say weweren't trained, it's always
going back to medical school andyou receive so much training
after medical school, right,Residency and fellowship and all
of these other things.
So, I love it and it also kindof makes me like giggle a little
bit on the inside because I'mlike, okay, we all, every other
profession you have to do, youknow training outside of
(20:11):
whatever you learned in schoolor whatever it's like you're
continuing to learn your job.
Speaker 3 (20:14):
You're so right, absolutely, and I didn't mean
just about not being trained inmedical school, but what I meant
is more about being able tohave this conversation and
trying not to show thediscomfort that you have while
you're having the conversation,because it's such a sensitive
and vulnerable conversation.
(20:36):
So we do have training.
A lot of times we get trainingabout having difficult
conversations or breaking badnews or talking about end of
life, aspects of training ordifferent themes and topics that
we get trained in in a way thatwe're not robots, that we get
trained in in a way that we'renot robots but at least for us
to like peel that band-aid andbe more comfortable once we're
(20:58):
faced with a real-life situationwhere we're having to deal with
these situations.
At least we would have done itin a more educational,
structured curriculum type ofsetting before we're in the
actual world, real-worldpractice of these conversations.
Because it's such a sensitivetopic Like, for example, end of
(21:20):
life, you don't want to bethrown into having an end of
life conversation with somebodyfor the first time without
having any training doing it ora framework to do it and then
end up saying something wrong orbad or hurtful at such a
sensitive time in somebody'slife.
Similarly with sexual health andsexual practices, you want to
(21:40):
at least have some form offramework or language and a way
to approach it that you becomecomfortable with addressing it,
that the first time you'readdressing it in clinic or the
multiple times you're addressingit in clinic, you would have at
least a framework you fall backonto in the way you communicate
with your patient, so that yourpatient knows that you are
(22:02):
somebody who is comfortable,confident and you are somebody
who they can come to and theycan 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 andthen your doctor starts fumbling
and dismissing it or moving onto another topic or start
sitting on their hands and justwobbling around as you're
(22:25):
looking at them and you're likewe're all human, like why aren't
you being normal about it?
Speaker 2 (22:30):
Why aren't you being normal I?
Would definitely say that.
What's wrong with you?
Why aren't you being normalright now?
Speaker 3 (22:35):
Right right, why aren't you being normal right
now and just answering myquestion?
But it's more about like,different people have different
levels of vulnerability,openness, and also different
levels of being reserved orbeing open or conversational, so
we cannot expect that everybodyreacts to different
conversations or topics in thesame way.
(22:57):
The most important thing is toremember that, just like you're
talking about poop in clinic andwe're comfortable and do it
like it's our second nature, wehave to channel that emotion of
oh, I'm comfortable, talk to meabout your poop all day.
Okay, let me channel that intohow I'm going to be talking to
you about all the other aspectsthat might be or might not be
(23:19):
comfortable, and also practicingdifferent frameworks or
different scripts that wouldallow me to become more
comfortable in bringing it up,because the patients might not
bring it up.
The majority of patients do notbring up sexual health and
sexual practices.
So I tend to ask all mypatients what do you do for sex?
Are you sexually active withmen, women or both?
(23:39):
What are different sexualpractices you engage in?
And I preface it by saying,because of IBD impacting every
aspect of your life, I want tomake sure that you are
addressing all the elements ofyour life that might be impacted
and some of them that you mightnot bring up to me.
I am bringing it up to you totell you that I am a safe space
for you to talk to me about thisand if you don't want to talk
(24:00):
about it this time, maybe nextvisit you can tell me more if
you want, and I'm happy toanswer.
And I do that about everythingelse.
I do that about how are youdoing, how's your mood doing,
how's your mental health doing,how are your relationships?
How is IBD impacting yourprogress and your career goals.
So it's like thinking aboutevery element, and we recognize
(24:21):
that not every provider hasenough time to spend that much
time with talking about yourdiagnosis, all the healthcare
maintenance needed, all thetreatment options or how you've
been doing on the treatments,and then to address all these
other very important aspects ofyour life that might be impacted
by IBD within a 15-minute visit.
(24:42):
It's impossible, but rememberthat we have a longitudinal
relationship with that patientand with that person and not
everything needs to be addressedtoday.
And these are things that youcould say cliffhanger.
On our next visit, how about?
We might also talk about yoursexual health?
Or on our next visit?
How about we might talk aboutyour career goals, because, oh,
(25:05):
you're in remission and you'vebeen doing great.
Let me maybe know you betternext time about other parts of
you that might be importanttowards your care.
So that's how I view it andI've familiarized.
Although I didn't have a formalcurriculum that I've gone
through.
I channel a lot of other ways,whether it's having difficult
conversation curriculum thatI've gone through before, or
(25:28):
having end of life conversationthat I've gone through.
I channel these frameworks intoother types of conversations so
that I've gone through.
I channel these frameworks intoother types of conversations so
that I have more openness, morevulnerability, more
authenticity with my patientsand being more comfortable
around these topics.
Speaker 2 (25:42):
New CE program led by Dr Victor Chedidi.
Just by being able to ask thequestion in a real and honest
way, you give your patientpermission being able to ask the
question in a real and honestway.
You give your patient permission.
You give them, whether they wantto talk to you about it or not,
where you're like the way thatyou asked that question, I was
like, okay, let's talk about it,I'm ready to answer that
(26:02):
question for you because it'sjust a real and honest way to
ask it.
And by you being willing to bethe first person to ask the
question, that gives yourpatient space to say like, okay,
I'm not ready to talk about itnow, but I could be ready to
talk about it in the future.
And also, I mean people aren'teven comfortable talking about
poop all the time.
I mean I've had IBD for 25years and my parents sometimes
(26:26):
will still say we don't, don'ttalk about that.
And I talk about poop everysingle day of my life.
It's such a big part of my life.
I never thought poop would besuch a big part of my life, but
it is.
And so I do really understandyou saying how sensitive the
topic is and how some people arenot comfortable talking about
it, because a lot of people inmy life don't even want to talk
about poop Right, which iseverybody poops.
Speaker 3 (26:49):
Everybody poops.
Speaker 2 (26:51):
At least once a day, hopefully.
If it's not once a day, youshould probably see a
gastroenterologist.
Speaker 3 (26:56):
No listen.
Speaker 2 (26:57):
I'm looking at you, Alicia.
Everybody has a difference.
Speaker 3 (27:00):
I actually think that a normal bowel movement
frequency is patient by patient.
Speaker 2 (27:06):
Some people might go every other day.
Speaker 3 (27:08):
Not necessarily once a day, Some people every other
day is normal for them and theydon't need to see a
gastroenterologist.
Speaker 1 (27:14):
I agree with Robin.
I do think the fact that youopen it up and you say it in
such a matter of fact way really, I think, does probably make
people feel a lot more confidenttalking to you about it.
But one thing you said is, likeyou know, talking like maybe
you're in remission and it's notbothering you, but I do think
there's been some people we'vetalked to that even when they're
in remission, this sort ofripple effects of of things like
surgeries still impact theirsexual health.
(27:35):
So can we talk a little bitabout like I would imagine that
if gastroenterologists aren'tsuper great about talking about
this, I would imagine surgeonsdon't get gold stars either,
maybe even less gold stars.
So, you know, can we talk alittle 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.
(27:56):
Like how are you talking tothem about the potential
ramifications of what this maydo for them in lots of ways and
including sexual health?
Speaker 3 (28:05):
Yeah, that's a great point and I have to preface it
by I love our colorectalsurgeons.
They're tremendous and I have alot of.
Them are my friends on directcall.
We go back and forth thinkingabout ways to better improve our
patients' care.
We recognize we're all part ofa multidisciplinary team of
advocates and caregivers andproviders who are putting that
(28:29):
patient in the center ofeverything.
And so I've had discussions alot with a lot of my colorectal
surgeons and so I've haddiscussions a lot with a lot of
my colorectal surgeons and someof them actually I noticed that
patients go to them about sexualpractices before they come to
us and ask us especially ifthey're undergoing a pelvic type
surgery, like a total colonremoval with a J pouch formation
(28:51):
, or they're having their entirecolon removed with the closure
of the anus or what some peoplemight call a barbie butt.
So the patients would many atimes go to the surgeon to ask
about sexual practices.
When is it okay for me to havesex?
How is it safe for me to havesex or not?
Is it safe for me to havepenetrative vaginal or
(29:14):
penetrative anal sex when I havea J pouch?
Will my J pouch surgery impactmy ability to have an erection
if somebody has a penis.
So so many questions that theygo to the surgeons.
Some of it has been studied,like I said, in a
heteronormative cisgender lens.
Studied, like I said, in aheteronormative cisgender lens.
(29:38):
But, like the aspects of analreceptive intercourse or anal
sex in folks who have hadJ-pouch surgery, for example,
this has not been studiedsystematically so we don't have
evidence-based data to guide ourpatients on.
Is it safe?
Is it not safe If the pouch washand-sewn versus was stapled?
(29:58):
Does it have better complianceif it was hand-sewn and you're
able to engage in anal sexbetter?
Or the rectal cuff is a littlelonger versus shorter, does that
have any difference on anal sex?
And that's where I brought upthe fact that having that
conversation prior to surgerywith a patient might modify how
(30:20):
the surgeon might want toapproach the surgery in a way or
another, and not that there isagain a lot of data to support
which way to go with the surgery.
But it might help the surgeonmaybe create a little larger
pouch if a patient is engagingin anal receptive intercourse or
giving them counseling on whenit would be safe, which, again,
(30:43):
we don't have data, but assumingthat if the pouch healed and
now it's normal.
You don't have issues withpouchitis or stricture or
narrowing at the site of thesurgery, then I don't see why
not.
If you're practicing safeapproaches to anal penetration
or anal intercourse, I don't seewhy not.
(31:04):
Why can't you individualize theapproach to that specific
patient?
Okay, you've not had any issueswith pouch inflammation or
pouchitis.
Your pouch anastomosis orsuture area is flexible.
So if you use a lot of lube,take it slow.
Know what's good pain, what'sbad pain, know when to say stop,
(31:25):
when to say go.
Have that mutual communicationwith your partner and engage
with your partner, involve themin your care if you want to.
You can involve them as much asyou want or as much as you
don't want.
And not everybody we cannotassume everybody is in a
monogamous relationship.
Some people have multiplepartners, can be polyamorous or
(31:47):
can be in open relationships orthere are a whole variety of
sexualities and sexualexperiences that we have to
honour and understand and beable to guide that specific
individual based on who they are, how they navigate life, they
navigate their sexualexperiences and sexuality and
navigate that surgery approach.
(32:09):
So there isn't a one glove fitsall, but that's the importance
of having that sit down andcommunication and leaning in and
listening and trying to betterguide that person.
If somebody ended up acquiringclosure of the anus with the
quote unquote Barbie butt, thatperson will not be engaging in
anal receptive intercourse.
And that'd be important to havethat conversation with that
(32:32):
person before.
Because for many people not onlygay men engage in anal
receptive intercourse.
It is a very common practicethat we don't ask about, but we
know that a lot of straightwomen, straight men, lesbian
women, gay men, trans person,every type of person might
engage in anal intercourse.
And so by leaning in and askingand knowing your patient better
(32:56):
, you would know what are theirsexual practices and you would
be able to counsel themaccordingly to what is
appropriate for them.
And also many people might feelthat this is part of their
identity when they engage inanal intercourse.
Within the gay community, forexample, some people are
exclusively what they callbottoms, so they only engage in
anal intercourse and they'reonly on the receiving end.
(33:18):
So if that person is going tobe losing their rectum, they
might be losing part of theiridentity and their sexual
identity and that might have abig impact on somebody's morale,
on somebody's mental health andhow they navigate life, and so
that's where, again, thecommunication is key.
Having these conversations iskey.
Speaker 1 (33:37):
Yeah, that would be a tough one.
That would be a toughconversation to have with
somebody because you're right,if that is such a big part of
their life and a big part oftheir sexuality, then that's a
hard conversation, right.
Speaker 3 (33:48):
Absolutely, and again , that's why I channel my
training in difficultcommunication and conversations.
Speaker 1 (33:53):
Yeah, yeah, so I'm guessing that there's a very
significant lack of literaturearound caring for the
transgender and sort of genderdiverse community, you know,
because it seems like therewould be a lot of hazards around
this.
You know you're having a doctorkind of downstairs is for
anybody is uncomfortable, buthaving that for somebody who
(34:14):
perhaps is really again is notin this cisgender pool, it feels
like there there would be a lotof potential folks that might
be dealing with some medicaltrauma, some medical gaslighting
that may have happened and somereal discomfort with getting
care.
Is there any research on that?
Like I kind of assume theanswer is no, just because you
said there are some people thatavoid care because of kind of
(34:36):
bad experiences and because of,you know, having doctors that
may have asked questions thewrong way or made assumptions.
So is there any research onthis and is there a way that
doctors can maybe, like thedoctors that are not you, who
clearly do this very well, couldbe better equipped to work with
people that are part of thetrans community?
Speaker 3 (34:55):
better equipped to work with people that are part
of the trans community.
So there isn't much research onit in IBD, on the trans
community specifically in IBD.
There are a couple of papersthat recently were published
more on the impact ofgender-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 monthsago.
(35:15):
It was led by Dr Audrey Bennettand that study looked at the
impact of gender-affirminghormones on transgender folks
who have IBD one year prior toinitiating gender-affirming
hormones and one year pastgender-affirming hormone
initiation.
And our aims were to look atrates of flare after initiating
gender-affirming hormones andwhat was interesting in our
(35:37):
study is that we showed thatthere wasn't an increased rate
in general.
Overall there wasn't anincreased rate of flares when
you initiate gender-affirminghormones in this community.
But there was one signal, fortestosterone maybe can result in
a slight increase in risk offlaring in a transmasculine
community.
But that does not mean I cautionthis, with multiple cautions is
(36:00):
that gender-affirming hormoneis life-saving care and
life-saving treatment andtherefore it should never be
that we're blaming something onthe gender-affirming hormones
and make the person stop that,because we recognize that when
somebody is on their journey oftransitioning, they have gone
through a lot to reach to thatjourney.
(36:21):
It's not something that'sovernight that somebody decides
to transition.
It's something that has been,that the person has gone through
a lot to reach to that pointand so by the time they've
reached that point, we know thatgender affirming hormones has a
great impact on somebody'sgender dysphoria, on somebody's
mental health.
Risk of suicide is decreasedafter somebody starts gender
(36:45):
affirming care and genderaffirming hormones and therefore
, as an IBD doctor, my roleisn't to play the broken arm
syndrome or always blaming thegender-affirming hormones on any
flair that that patient mighthave thereafter.
My job is to acknowledge thatthis person is in a much better
place now that they'retransitioning and they're living
(37:05):
their authentic self andauthentic life.
And how am I going to navigateor help you navigate your IBD
around that?
And so, with our study, when wesaw that there was a signal
with testosterone somebody who'sstarting on testosterone I
might have a more closemonitoring on their IBD in the
year after initiatingtestosterone just to make sure
they are safe and remain inremission, and if there needs to
(37:29):
be any minor adjustments totheir IBD treatment, I would
definitely do that, so that isimportant to keep in mind.
With that said, you brought upvery important points that the
trans community, but also peoplewho have IBD, have experienced
medical trauma gaslighting,dismissal, delays in care and
all those things.
(37:49):
More so the trans community,for sure, but what I'm getting
at is that I approach every IBDpatient, but more so the LGBT
community and specifically thetrans community, with
trauma-informed care, and thatmeans I assume everybody might
have some level of trauma.
And every step of the way I amapproaching that person with a
(38:11):
great degree of sensitivity,giving them step-by-step what
we're doing, pros and cons ofwhy we're doing it.
Specifically, within GI, a lotof our exams involve an anal
exam or a rectal exam involvesendoscopies that involve around
the genital area.
So making sure you're verysensitive around that and
(38:31):
informing the patients thebenefits and risks of a rectal
exam why am I doing it, why isit necessary in your particular
case and giving them the powerand the empowerment to say, no,
I don't want to get a rectalexam.
I recognize the risks andbenefits, but I'm not engaging
in it today or maybe next timeor never, and I respect that.
(38:51):
My job is to make sure that Iinform the patient about the
risks and benefits.
Why am I doing something andthey consent to it or not.
So, again, the trauma-informedapproach is extremely important
in any approach, whether inclinic or in endoscopy.
Making sure that when you'reexamining the pelvic area
(39:11):
particularly the anal exam orrectal exam that you reassure
somebody who might beexperiencing gender dysphoria
the transgender folks thatyou're not going to be exposing
their genitals to the entireroom in endoscopy and that their
genitals are going to always becovered.
But I do that for anybody.
I make sure that your genitalsare covered at all times during
(39:32):
your colonoscopy because we makesure that we're just exposing
the part that we need to exposewhen we're doing your
colonoscopy to make sure that weare doing the good exam, the
right exam, without exposing youbeyond.
That needs to be exposedbecause of how vulnerable this
type of exam is.
So if every gastroenterologistapproaches every patient with
(39:53):
IBD with such a trauma-informedframework, particularly in the
LGBT community and specificallythe transgender community, it's
going to take them a long way intheir patient rapport, in my
opinion.
Speaker 2 (40:04):
I have to take you back to the hormones for one
second, because this is apedestal that I get on a soapbox
.
So there is evidence and pleasecorrect me if I'm wrong that
biological females' hormonesaffect their IBD already.
So do you think that thegender-affirming care plays a
(40:27):
similar role for biologicalfemales, and it's not just
because it's for this purpose?
We already know that hormonesaffect biological females, so do
you think that that is part ofit?
Speaker 3 (40:40):
I think so.
Yes, the answer is yes becausewe know from studies in
cisgender females that estrogencan have a pro-inflammatory
element and can make IBD flaresworse.
And what we were interested inis to see the rates of flare in
the transgender community priorand post starting
(41:01):
gender-affirming hormones,whether it was estrogen or
testosterone.
And what I said is that therewasn't an increased rate of
flare prior and post.
And recognizing that was aretrospective study from a chart
review study.
It's not a clinical trial withprospective follow-up and a
randomized blinded control trialapproach.
It's a chart review study thatis impacted by biases that could
(41:25):
be from the chart, extractionand missing data and all that.
But recognizing that this isthe only evidence we have right
now and it is important evidenceto drive that message, it
doesn't dismiss the fact that weknow from biological studies on
lab studies, like on mice andalso on humans, that some of the
(41:48):
gender hormones, like estrogen,testosterone, estrogen
specifically can have morepro-inflammatory effects on IBD.
Speaker 2 (41:56):
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, Iassumed you were going to ask
that question, Robin.
Speaker 3 (42:05):
Yeah, and many, many folks when they're having their
menstrual cycles they noticemaybe that their IBD can flare
around their menstrual cycles Inpregnancy.
We know that if somebody hasactive IBD at the time of
conception, their IBD if it'sactive at the time of conception
, there's a two-thirds chance ofthe IBD getting worse or
staying the same during thepregnancy and one-third chance
(42:29):
of the IBD getting better, whileif the IBD is in remission at
the time of conception, theirchances of the IBD staying in
remission throughout thepregnancy is around two-thirds
chance.
So that's why a lot of ourcounseling when somebody is
interested in prenatalcounseling with IBD, we do
counsel about the importance ofachieving remission prior to
(42:49):
conception.
Speaker 2 (42:51):
I think that it's not across the board.
Estrogen, progesterone,testosterone Again, I am not a
scientist, I am just a patientwith lived experience.
I just feel like it affects IBDmore than anybody really knows
and I would hate for somebodynot to get the gender-affirming
care that they so richly deservebecause of fear of a flare when
(43:15):
that is like when hormones arecan affect, no matter what, I
see what you're saying.
I'm starting to tear up rightnow, just saying that, like I
just I think that I think thatwould be a huge disservice
because it's the hormones affectus all, no matter what our
biological gender is how weidentify.
It affects our IBD, no matterwhat.
Speaker 3 (43:35):
Right and again that comes from a place of
recognizing that a trans persondoesn't come to the beginning of
their transitioning journeyovernight.
They've gone through a lot tillthey've reached that beginning
of their journey and the persontreating them might have
implicit biases against thatcommunity.
Specifically, and when they'recounseling for stopping gender
(43:58):
affirming hormones, they mightbe thinking they're giving them
out of their best interest rightLike I'm telling you to stop
this because I'm trying to giveyou what's in your best interest
but that might be fraught witha little unintentional implicit
bias of oh, you're doing this toyourself, you don't need to
transition, and that's not theway we should be approaching
(44:21):
somebody who have reached thebeginning of their transitioning
journey, which is a big dealfor somebody, and this is an
amazing thing when somebodyactually gets to start living
their authentic self.
Speaker 1 (44:32):
Well, and I don't know, it just reminds me of like
there's risk in treatingeverything you know the
medications.
Yeah.
So I mean like this this riskof taking a you know a hormone
in causing a flare is I don'tknow.
I kind of akin to like saying,okay, don't take a biologic
because there's a tiny chancethat you may develop cancer,
(44:52):
kind of thing.
It's like well, one of thedoctors are really saying, well,
don't take a biologic becausethere's this tiny chance you may
develop cancer, kind of thing.
And it's like, well, one of thedoctors are really saying, well
, don't take a biologic becausethere's this tiny chance you may
get cancer.
So I don't know, to me it'slike you're going and you're
saying one thing but you're likethe other one is basically akin
in my mind.
Speaker 3 (45:05):
That's a great point, alicia, that you just made, so
thank you for making that point.
We always talk about risks andbenefits of everything, so why
do we not see it the same waywhen we're counseling somebody
who's transgender andtransitioning?
Speaker 1 (45:18):
Yes, I know.
One of the other studies that Iwas looking at when I was
looking you up is that youculturally sensitive practice.
Speaker 3 (45:24):
Yes.
Speaker 1 (45:25):
I'm curious especially how that layers in
with also working with LGBTQIplus community.
I would imagine there's somedistinct differences in kind of
how you might work with somepeople, some cultures.
I don't know this, but I kindof assume that layering in sort
of some cultural differencesmight also make this a very
different conversation you mightbe having with people, or like
(45:47):
it might be that there's thefamily is involved and what
happens if the whole family's inthe room and how are you
talking about sexual practiceswith dad sitting next to
somebody you know so curiousabout all of that.
Speaker 3 (45:58):
So in that paper we actually explored the concept of
cultural sensitivity in IBDcare and, in specific, what you
just defined is calledintersectionality
intersectionality of identity,and so that means that if
somebody is gay, it doesn't meanthat they're just gay.
It doesn't mean that everythingthat applies to one gay person
(46:18):
applies to all gay people andyou can just go on treating
every person the same way entity, and that includes what their
race is, where their nation oforigin is, what their
immigration status is, whattheir ethnicity is, their gender
(46:41):
, their sexual orientation,their household income,
educational status All of thatintersects to make that one
human being.
So each aspect that I justmentioned has a different impact
on that person's journeythrough their healthcare
experience or their IBD journey.
(47:02):
Which means that if somebodybelongs to the LGBTQ community
and I don't want to put it allin one bucket because I want to
get a little more nuanced hereIf somebody is cisgender male,
gay and Indian, of Indian originand born in the United States,
so that person is American andalso medical student.
(47:27):
That person's lived experienceis very different than a
cisgender male, gay, but Indian,born in India and a medical
student.
And in order to betterunderstand the experience of
that one first person that Igave you as an example.
To that second person you haveto lean in and to have more
(47:48):
cultural sensitivity andunderstanding, because if I
assume that, oh, they're both ofIndian origin and therefore
they might believe the samethings and have the same lived
experiences, then I've made somany biases and shortcuts that
have completely done both ofthem a disservice and I've
approached their care in a waythat is not helpful for either
(48:10):
of them.
So what I always do is try toleave my biases at the door
before I walk into the room, andI always try to check with
myself what are my biases, andso I try to listen to that
person.
Tell me about your livedexperience.
How is it being American, bornof Indian origin, being gay and
(48:33):
having IBD versus?
How is it for you, who is mayberecently immigrated to the
United States and navigating theimmigration system along with
navigating everything else,living with IBD as well?
And so the insurance, forexample, access for that one
person might be very differentthan the insurance access for
that person, and I might need togive more resources to that
(48:54):
person who's navigating alsotheir immigration status and
their identity.
They might not be fully out,they might be half out to some
friends, but not to theirparents.
And again, it's all aboutknowing that person in front of
you so that you would be able totailor the care for that one
person here versus the care forthat person there, so that you
(49:15):
would get the best outcomes foreither of them.
You cannot just blanket makeassumptions and blanket
prescribe different medicines,assuming that everybody is going
to have the same experience.
And so that's where culturalsensitivity comes to play, and I
hate the word culturalcompetence, which I've heard in
(49:35):
many historic trainings wherethey say oh, we're going to do
cultural competence training andthis is a major assumption that
you're assuming you'remastering the care of all
different cultures and you'recompetent.
Nobody's ever going to becompetent in anything culturally
related because there's layersand layers and layers of nuances
(49:58):
.
So that's where culturalhumility is a better approach.
Cultural sensitivity andhumility where I acknowledge
that I don't know a lot, and oneof my mentors that I quote a
lot.
He says in our current state ofignorance, because we know a
lot, we study a lot, but there'sway more that we don't know,
(50:21):
whether in medicine and ourmedical knowledge and also in
our cultural knowledge and inour approaches to human beings,
and so that's where I sayapproaching people with more
cultural humility, leaning inrecognizing intersectionalities
of identities, leaning inrecognizing intersectionalities
of identities, leaving yourbiases at the door as you're
talking to people, is a greatapproach, in my opinion, that
(50:42):
you should incorporate in yourIBD care.
Speaker 2 (50:44):
I'm really sad that I have to ask you the last
question, because I feel likethat even that answer to
Alicia's last question, I'm likeokay, I have three more
questions that I want to ask youbut we've already been talking
to you for more than an hour.
Speaker 3 (50:57):
It's been so fun.
Thank you.
Speaker 2 (51:00):
I adore you.
Speaker 3 (51:01):
J'adore.
Speaker 2 (51:02):
Completely, and what is the one thing you want the
IBD community to know?
Speaker 3 (51:07):
Well, I thought a lot about this one and I think I
settled on the one thing, and Iwould like to say that people
living with IBD are the expertsof 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 compassionatecare when you trust their voice,
(51:28):
it is clinically sound practice.
I think patients with IBD aremore than just their diagnosis.
I think patients with IBD aremore than just their diagnosis.
They have their intersectionalidentities and to truly care for
them, we must embrace theirfull identity clinically,
culturally, personally and buildcare models that are inclusive,
affirming and responsive totheir lived experiences.
(51:50):
And that's all.
Speaker 2 (51:51):
Trust and believe.
I have said that.
Listen and believe.
Believe your patients when theytell you.
Believe your patients when theytell you.
Speaker 3 (51:57):
Believe your patients when they tell you Like many
times the patient is telling yousomething is off, because
something is off.
It might not be that there'sreally high inflammatory markers
or active inflammation.
It might be something else thatyou want to explore with them
and try to better understand,because many times I see people
cycling through biologics whenin fact their disease has been
(52:19):
quiet for a long while andthey've been responding to that
initial biologic.
But every time a patient comesin with I feel off or something
is wrong.
The first go-to is to changethe treatment when in fact it
could have been an issue withpelvic floor dysfunction or
abdominal wall pain or somethingrelated to their gut brain
access, where their mentalhealth or SIBO, like so many
(52:42):
things, that yes, so no.
That's, that's the truth, andso that's why I say believe your
patients, but also try toexplore things outside the box
to be able to better serve themyeah, I think, especially since
there is it's not like we have abajillion treatments for
inflammatory bowel disease.
Speaker 1 (53:00):
You know there's there's a limit, and so you're
right, cycling through thedifferent medications is a bit
dangerous, because then whathappens if you get to the end of
the line?
Speaker 3 (53:10):
Right, yeah, yeah.
Speaker 1 (53:11):
Right, but also the more important is listen to your
patients.
That is the perfect response tothat question.
And maybe we have to stop askingthe question because I don't
know, I think you just droppedthe mic on everybody, and so it
has been such a pleasure to haveyou on the show.
We've really, really, reallyenjoyed our conversation and we
just are so impressed with thework that you're doing.
It's so important anddefinitely life-changing
(53:33):
life-saving for people, I think,in a lot of ways.
So thank you for that and thankyou everybody else for
listening to the show and cheersguys.
Speaker 3 (53:41):
Cheers, cheers, cheers.
Thank you for having me.
Hi, this is Victor Shadeed, andif you enjoyed this episode,
please rate, review, subscribeand share with a friend.
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