November 5, 2025 • 51 mins
Want a clear, human guide to modern IBD care without the jargon? We’re joined by Janette Villalon, a physician assistant at UC Irvine’s IBD Center, who brings a front-line view of what truly helps patients: personalized therapy choices, honest safety talk, and practical plans that fit real life. She traces the evolution from a handful of anti-TNFs to a wider toolkit—anti-integrins, IL-12/23 and IL-23 inhibitors, JAK inhibitors, and S1P modulators—and explains how we match treatments to goals like fast relief, fewer side effects, and coverage of extraintestinal issues such as arthritis, uveitis, and psoriasis.
We dig into how APPs power the day-to-day of IBD clinics, from education to monitoring and rapid access, and how the GHAPP Conference and national societies elevated advanced practice training. Janette breaks down when clinical trials make sense, why strict inclusion criteria matter, and how logistics can steer decisions when someone is very sick. She demystifies biosimilars, outlining FDA standards that support confident switches when insurance demands it, and shares how she helps patients balance infusions, injections, or pills against travel, work, and adherence.
For those planning a family, Janette offers timely guidance: aim for clinical and endoscopic remission three to six months before conception, continue pregnancy-safe maintenance therapy, and discuss starting low-dose aspirin at 12 to 16 weeks to lower preeclampsia risk, coordinated with maternal-fetal medicine.
Looking ahead, we explore precision medicine and AI—predictive markers, microbiome insights, and smarter monitoring that could reduce trial-and-error and catch flares early. The throughline is empowerment: ask questions, read, return for follow-ups, and shape your care around your life. We close with community resources from the Crohn’s & Colitis Foundation and a shout-out to Camp Oasis for young patients.
If this conversation helped you, subscribe, share it with a friend, and leave a quick review—what’s the one topic you want us to go deeper on next?
Links:
- Gastroenterology & Hepatology Advanced Practice Providers (GHAPP) organization
- Camp Oasis- Crohn's & Colitis Foundation USA
- IBD Medication Guide- Crohn's & Colitis Foundation USA
- Pregnancy & IBD video- Crohn's & Colitis Foundation USA
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_02 (00:00):
Hi, I'm Alicia.
And I'm Robin, and you'relistening to Bow Moments, the
podcast sharing real talk aboutthe realities of IBD.
Sir.
This week we talked to JeanetteViolone.
Jeanette is a physician'sassistant at the University of
California Irvine IBD Center.
We talked to her all about howthe PAs work within the IBD
(00:22):
Center and how they support thephysicians and the rest of the
team.
We talked to her about treatmentchoices and how she works with
patients to make the rightselection and to give them all
the education that they need tochoose the right thing for them.
We talked to her about pregnancyand inflammatory bowel disease
and her special interest thereand the advice that she has for
patients and so much more.
We know you'll enjoy thisconversation just as much as we
(00:44):
did.
Cheers.
SPEAKER_01 (00:48):
Hi everybody, welcome to Bell Moments.
SPEAKER_02 (00:50):
This is Robin.
Hey everyone, this is Alicia,and we are so excited to be
joined by Jeanette Villon.
Jeanette, welcome to the show.
SPEAKER_00 (00:58):
Thank you so much for having me.
I'm so excited and humbled andhonored.
And I'm really excited to behere with you guys today to have
this casual fun conversationabout IBD and what's going on.
So I'm really excited.
SPEAKER_02 (01:11):
Well, we are very, very excited to have you and to
learn all about you in just asecond.
But our first veryunprofessional question is what
are you drinking?
SPEAKER_00 (01:18):
I don't know if that's a great question.
And I'm probably a really,really bad example because I
should practice what I preach,which is drink water and it's so
healthy for you and hydrating.
And I hate water.
Oh my God.
I wish I loved it.
I try so hard to drink it.
I really do.
But I'm currently drinkingGatorade Zero.
(01:40):
You know, I kid myself becauseit has no sugar, but it's
probably bad sugar.
But yeah, I'm drinking GatoradeZero and it's the glacier
freeze.
That's that's my choice.
I wish I could say I wasdrinking water with ice with a
touch of lemon, but no.
SPEAKER_01 (01:59):
I feel like a lot of people who listen are gonna feel
justified.
They're gonna be like, yes, hereis a medical professional saying
that they don't like water.
SPEAKER_00 (02:07):
Yep.
SPEAKER_01 (02:07):
Robin, what about you?
I am drinking ice water, but Ialso have coffee though.
I will drink coffee all hours ofthe day, even though it's
nighttime.
I don't care.
SPEAKER_00 (02:18):
Oh, I'm the same way.
I I love my coffee too.
SPEAKER_02 (02:21):
What about you, Alicia?
I am drinking a spindriftspiked.
The sparkling water is spiked.
This is uh real squeezedgrapefruit.
So I'm excited.
SPEAKER_00 (02:31):
That's exciting.
I haven't even opened it.
If I would have known, I wouldhave brought like a couple like
with my favorite alcohol if I ifI do drink, because I'm more
into the sugar than the alcohol.
So like a Bailey's or mojitowith extra mint, totally my
favorite.
I do love a mojito.
SPEAKER_01 (02:47):
Yes, I do love a mojito.
SPEAKER_00 (02:49):
Mint is very anti-inflammatory for the gut,
so I feel that it's I'm actuallynourishing my teeth.
And then margaritas.
Those are kind of oh, and Malibubabies.
I love those too.
So it's a Malibu baby's.
I don't know what that is.
It's coconut rum with pineapplejuice and a splash of cranberry.
And I'm very particular becausesometimes bartenders will
(03:12):
instead of pineapple juice,we'll put in grapefruit juice,
not the just not the same drink.
So it has to be pineapple and atouch of cranberry, and it is so
tasty.
SPEAKER_02 (03:21):
So, Jeanette, next question for you is what is your
connection to the IBD community?
What brought you into this as aprofession?
SPEAKER_00 (03:28):
So I'm gonna be honest.
So I've been a physicianassistant for many years.
I graduated PA school in 2001,and then initially my first job
out of practice, out of school,was a job at Mount Sinai in New
York, New York.
I was actually living therebecause I went to school at
Cornell and I lived in New YorkCity for a few years.
(03:49):
It was fantastic.
And I actually ended up gettinga job at Mount Sinai, and I
started my world in myexperience, if you will, in
transplantation.
So I worked in liver transplantand intestinal transplant
initially.
Back then, my experience withliver transplant was fantastic.
I will say liver transplant,this was at that time in the
(04:11):
early 2000s.
I'm sure it has changed.
Success rates were pretty low.
I'm sure they've gotten muchbetter.
But at the time, to find outthat this was an option for
patients that had short gutsyndrome or other issues with
their gut to actually have anintestinal transplant was pretty
amazing.
So I got a lot of experiencethere.
And then I ended up at UCI whenI ended up coming home to
(04:33):
California.
I started in UCI, uh, working inhepatobiliary and liver kidney
transplant.
So I did that for many years.
It was amazing.
I got really comfortable withworking with a lot of
immunosuppressive medications,and I'm very clear on using the
word immunosuppressive becauseas I talk later, IBD medical
(04:56):
therapies, a lot of patientstruly believe that they're
immunosuppressed when really alot of our all of our medicines
are really immune-targeted,which is a difference.
Outside of prednisone, ofcourse, which we use, which is
immunosuppressive, all of ourtherapies are really
immune-targeted.
So that really impacts our carein a much more positive way in
(05:16):
terms of side effects and thingslike that.
And then in 2014, this kind ofjust landed on me.
I had my daughter Eva when in2012, and I wanted to work a few
less hours and be have a littlebit more flexibility and kind of
started putting it out thereeven at UCI that I was looking
for something different.
And that's when I met Dr.
(05:37):
Nemisha Parek.
She is currently the IBDdirector at UCI.
She's the one that establishedthe program, created the
program, and has built theprogram.
And I did explain to her, quitehonestly, I was looking for
something a little bit moreflexible with less hours.
So I work about 32 hours a week,uh a little more in terms of
admin time, but it's flexible,which is what I needed.
(05:57):
And, you know, it's one of thethings I tell a lot of people, I
wish I would have started this alot sooner when I was single and
had a little bit more timebecause I do realize that IBD is
an amazing field.
It really started growing a lotwhen I entered the profession.
And since then it has grownreally exponentially.
And so that's kind of how Ilanded in it.
You know, to think back, Istarted in October of 2014.
(06:21):
And if we can imagine kind ofthe spectrum and of the
medications that we had, wereally had the anti-TNFs to work
with, which included infliximab,adolimimab, and then we worked
with Certalismab and thenSymphony, which I can't remember
the brand name because honestly,we weren't using it that much.
(06:42):
And then we also had obviouslythe immunomodulators, including
the thiopurines andmethotrexate.
And then we had gottenvitalismab in 2014.
And so that's kind of where Istarted.
And then since then, it hascatapulted to a bunch of new
medicines, which I'm sure we'llgo to get into later.
SPEAKER_01 (07:03):
Besides the medications, what other changes
have you seen in the past decadefrom your point of view in
clinical practice?
Because there's so much researchin IBD, but like how does that
translate into actual patients'lives every day?
Because it has to go through theclinic, right?
To get there.
SPEAKER_00 (07:22):
Yeah.
Well, let me say first, when Ifirst started, what makes IBD so
different and what was so kindof exciting about it and so
different for me, for me, is Iwanted to get in there and be
like, okay, what's thealgorithm?
What do you do?
Tell me steps one, two, three,kind of how do we do that?
(07:42):
And it was easier, I think,looking back back then, because
we didn't have as many therapiesat our disposal.
So what we've seen in the lastdecade or so is such an
expansion of therapeutic optionsthat the discussion of
positioning drugs has become alot more complicated.
(08:04):
And so there is always a lot ofresearch.
We have a new classes of drugsthat we are now using.
Initially, for example, afterbetalismab came out, we've had
the, which is an anti-integrin,we've had interleukin 12 and 23
blockers, we've had JACinhibitors, we've had
interleukin 23 blockersexclusively, and S1Ps as well.
(08:30):
And so we have so many drugsthat the discussion of
positioning has really become anissue and how you pick the best
therapy for a patient with IBD,how we can incorporate the use
of knowing the patient'spotential extraintestinal
manifestations that they mayhave and seeing what we can
(08:52):
treat with one drug that maytreat several things versus
various medications for each ofthe individual conditions.
So in clinical practice, anotherthing that I think has grown a
lot for me personally as anadvanced practice provider.
Again, I'm a physicianassistant, but within the
umbrella, it also includes nursepractitioners.
(09:13):
Is we've really gone a long wayto get information to our
advanced practice providers,which have really become crucial
in terms of the day-to-daymanagement of patients as
physicians work to do otherthings, whether it's doing their
procedures, whether it'sparticipating in conference and
(09:35):
their speaking events orconferences that they may
attend.
Really, it's the advancedpractice provider that we're
seeing a lot more readily on thefront lines of IBD.
And when I first started, therewasn't a lot of avenues and
there wasn't a lot ofopportunities where APPs were
given direct information to usas APPs.
(09:58):
We would attend conferences muchlike the physicians, but what
has really changed over the lastdecade is kind of this
partnership between physiciansand APPs, where they have really
escalated us in terms ofproviders for inflammatory bowel
disease.
So, for example, we have the GAPconference, which is huge.
It's the Gastro and HepatologyAdvanced Practice Provider
(10:20):
Conference.
It's for APPs, taught by APPs,led by APPs, for other APPs.
We didn't have that.
This is about eight years old.
And we are now teaching eachother about inflammatory bowel
disease as well as other GIconditions.
And so I think it's reallyimportant because the team for
(10:41):
inflammatory bowel disease isreally growing and becoming much
more knowledgeable.
We've got another advancementover the last 10 years is a huge
focus, not only on medicaltherapy, but the comprehensive
care of the patient, includingdiet, psychosocial aspects,
having patients meet with socialworkers, having them meet with
(11:02):
dietitians, registereddietitians.
Me personally, I did a fantasticprogram through Cedar Sinai
where it was called IBD andDiet.
And we analyzed various dietsthat patients often ask about
the, you know, specificcarbohydrate diet or the CDED
diet, the Crohn's diseaseexclusion diet.
So how we managed to incorporatethat in our clinical practice.
(11:25):
So we're really looking at thepatient as a whole.
We also have a social workerthat they meet with and you
know, addressing some importantissues in IBD, including anxiety
and depression.
So kind of really focusing on amore holistic approach to care
in IBD, not just prescribingmedical therapies.
SPEAKER_02 (11:44):
I love that.
I love that that program is soholistic and really looking at
every aspect of people livingwith in their disease.
So I'm going to back you up ahair because you mentioned, you
know, sort of PAs, NPs, nursepractitioners.
Some people may not necessarilyknow what that is.
I'm guessing most peopleprobably have encountered a PA
or an MP.
But would you mind just talkinga little bit about how your
(12:06):
profession, how the PAprofession differs a little bit
from like the physician side ofthings, but how you work
together?
SPEAKER_00 (12:12):
So that is a really good question.
So there is a difference.
So for a physician assistant,you know, obviously physicians
go through, they get theirbachelor's, they go do a medical
school, which is four years,then they do a residency, you
know, whatever specialty theywant to do.
And more often than not, we'reseeing a lot more highly
specialized physicians and theydo fellowships, whether it's a
(12:35):
fellowship in gastroenteralogy,you know, anesthesiology, if you
want to, you know, be a surgeon.
So there's different programsand specialties that they do.
They have a very prolonged uheducation.
Our physicians are very, verywell trained.
And I will say this I respectour physicians, and I'm also
very clear in that I am not aphysician.
(12:57):
And I think that's veryimportant when you encounter
APPs, is that as wonderful as weare, it's very important to kind
of know our place in the teamand our relationship with our,
you know, physician colleagues.
That there are going to besituations where I encounter
that I may not understand or Imay need a little bit more
guidance.
And so I never want to gooutside of that space that I'm
(13:21):
comfortable for a matter of ego.
Patient safety and, you know,providing the best patient care
is more important to me than myego or coming up with something
that I may not understand.
And so I have no problem intelling patients, hey, you know,
let me discuss this with myattending and I'll get back to
you.
And so that also is reallyimportant in building trust and
(13:43):
rapport for those patients that,exactly, like you said, that may
not have experience with aphysician assistant or a nurse
practitioner.
The physician assistanteducation is different.
We do get a bachelor's and thereit's a master's.
Most programs now are master'sprograms.
When I went to school, it wascertific a certificate program,
but we have advanced now andthere's master's programs.
(14:05):
And later I did go and get anonline master's through Toro,
but now most programs are amaster's.
And it's a three and a half yearprogram where we kind of mimic
the medical school model.
We have a didactic session,which is about a year and a half
of didactic books, chemistry,basic science, all of that.
(14:27):
And then a year and a half ofinternships or rotations.
And, you know, in that youdevelop your thesis and you have
your masters.
So our education mimics the kindof the medical school model, but
in less time, with the idea thatwe get exposed to all aspects of
medicine and then we get a job.
(14:48):
And at that job, we get on handstraining and expertise as you go
along and get more practice.
The nurse practitioner model isa little bit different.
I can't speak 100% on them, butthey are nurses before they
advance their degree to nursepractitioners.
It adds a very authentic kind offield to nurse practitioners.
They are very patient focused.
(15:09):
They kind of uh have a differentsort of education, but
essentially we at the end of theday, we all do patient care
where we can prescribetherapies, order tests and labs,
interpret exams, and you know,make appropriate diagnostic
evaluations.
So we kind of get there in adifferent way, but we ultimately
have the same goal.
SPEAKER_02 (15:29):
Thank you so much for that explanation.
I mean, I know I have definitelyseen a nurse practitioner, I've
seen a PA, both really fantasticexperiences.
And I always felt like I wasreally listened to, which I so
it sounds like that's really animportant piece of kind of your
education is that real likepatient-centric aspect of
things.
SPEAKER_00 (15:45):
It's funny you said that because I actually have had
several patients who have saidto me, like, I really feel like
I somebody's listening to mebecause I do make that effort
into listening.
Because I, for example, haveseen patients that, you know,
they have IBD and their IBD istotally in remission, both
clinically and endoscopic.
They meet all the guidelines,you know, normalization of
(16:07):
inflammatory markers, butthey're still having six to ten
bowel movements a day.
So they have diarrhea orwhatever.
And they have seen gastros formany years who've managed their
IBD, but the patient still hasdiarrhea.
So that's when I say, okay,well, that's a totally different
thing.
We now have to delve into thatbecause, you know, not all
(16:27):
diarrhea is inflammatory boweldisease related.
And so I'll evaluate them andask them questions, and they've
said to me, you know, which isvery nice for me to hear, but at
the same time, it kind of givesyou an idea that when somebody
becomes so focused, sometimes weignore other things.
And she's like, that's like thefirst time somebody has really
listened to me.
And so it's it's it's good.
(16:48):
It's, I think, a wonderfulquality that providers should
give their patients, but maybenot all do.
So anyway, but yes.
SPEAKER_02 (16:55):
Well, I think you get that in every profession.
There's some people that do itdifferently than others, and so
but I'm it sounds like you youhave a great patient care model.
Um I am curious a little bitmore about the you mentioned the
APP training that's been aroundfor eight years.
And I I'm sorry, I did not writedown the name, and so now it's
out of my brain.
I think that's super cool.
How did that get started?
And then is there like, does ithave a theme every year?
(17:17):
How do you decide what's goingto be in the training session?
Has it evolved so that you havekind of like newer PA training
or APP training and then likepeople who have been in the
field for a little bit longer?
Tell me more about this.
SPEAKER_00 (17:28):
Well, thanks for asking.
Yeah, it's something that I'mreally proud of that our fellow
colleagues have made.
There is a conference that iscalled the Gastro and Hepatology
Advanced Practice ProviderConference.
And GAP has really grown.
We just went through our eighthyear or ninth.
(17:49):
I just spoke at it and I can'tremember which one is which.
Basically, it started as a smallgroup of APPs that were
realizing that we were notgetting the appropriate training
in gastroenterology as a whole,because there's a lot of new
(18:09):
grads, but there's a big stepfrom graduation to becoming an
experienced provider.
And while, you know, physiciansget a lot more training in that
because they have residency andfellowship and a lot of things,
you know, physician assistantskind of graduate from their
degree and then they move on topatient care.
(18:30):
So somebody has to train them.
And we were realizing that therewas a big deficit in our
education in gastroenterology.
So there are a lot of foundingmembers, including, I don't
know, back then it was ElizabethEvans that I worked with, Sharon
Dudley Brown, who's out of JohnsHopkins.
Through my years, I have metsuch amazing advanced practice
(18:50):
providers.
And they established this groupso that we could teach each
other.
And that makes a big differenceto be taught by each other.
There's a lot less, you know, atthe end of the day, physicians,
you know, they teach themselvesin certain ways.
And sometimes a lot of,especially new grads, might have
more insecurities about askingquestions or approaching doctors
(19:13):
about certain things.
So this conference startedbasically out of that idea.
And I have spoken at multipleconferences and it's set up to
where there's a big plenarysession.
We have committees within GAP.
There's educational committeesand a lot of different
committees that make it happen.
So I really want to give a shoutout to all of the members
(19:35):
because I haven't participatedin that aspect, but it is a lot
of work.
These people put a lot of timeof their own to establish the
appropriate curriculum and findadequate and experienced
speakers that they can contractto really provide that not just
education, but experience thatthey bring to the table.
(19:57):
So I have spoken in the pastabout inflammatory bowel
disease, Crohn's disease,ulcerative colitis.
I've done a talk on pauchitis,I've done a talk on ostomies,
but we also have hepatology,which is a huge field.
We have advanced practiceproviders that specialize in
esophageal disorders.
And so they look for expertsamongst advanced practice
(20:19):
providers across the country.
And those experts teach otherAPPs that are interested in
learning.
And that could vary from newgrads.
There's a program within GAPthat's called IBD Bootcamp.
And it's a whole session on allthe information IBD.
And so I'm extremely proud to beinvited as a faculty speaker
(20:41):
there.
But I won't take the creditbecause it took a lot of behind
the scenes work from a lot ofAPP pioneers that have really
grown this into a program whereevery year we're seeing more and
more advanced practice providersattending.
So, and they kept it goingthrough COVID, and they're
always coming up with innovativetopics to keep us up to date on
(21:03):
the most updated information.
So I really, you know, want toencourage all APPs to attend
that practice in Gastro and, youknow, focus on our education a
lot more.
That's super cool.
SPEAKER_02 (21:15):
I and I agree with you.
I think having you teach eachother is such a great way for
people to learn.
Has this sparked additionalchange in things like the AGA,
like DDWs, so digestive diseaseweek conference or the AGA
conferences or any of theseother like big conferences that
happen?
Have you noticed has that alsokind of changed how they are
handling education or howthey're doing things?
SPEAKER_00 (21:36):
Yes, it really has.
Like I said before, there hasbeen an evolution, I think, in
the partnership and relationshipbetween physicians and their
advanced practice providers.
I'm very fortunate.
I've always had a veryforward-thinking physician, Dr.
Nemisha Parek, who alwaysconsidered me a partner.
I didn't work for her.
(21:57):
She was always my partner inthis.
We were partners.
But we have seen it.
So the ACG as well as the AGAnow have committees for and
about advanced practiceproviders.
And they're really trying toincorporate us into that system
as well, as they realize that weare really on the front lines
(22:20):
and we allow physicians to doother things while we're the
ones that kind of have a lotmore face-to-face time with
patients.
And so they have recognized it alot.
As a matter of fact, just on apersonal note, I was asked to be
a part of just this last weekendwhen I went to GAP, it's called
(22:40):
the Milestones APP LeadConference.
And I was invited to be afaculty guest.
And it was spearheaded byamazing IBDologists, Anita
Aspali, Dr.
Ben Cohen, Dr.
Christina Ha at the Mayo Clinic,along with Angelina Collins and
(23:01):
Amy Stewart, both nursepractitioners in IBD and Gastro.
And they basically invited PAsand NPs across the country that
are doing IBD and brought themin to teach them leadership
skills, teach them how to createa presentation, educate them on
(23:24):
other avenues that we canpursue, whether it's in
education or speaking, andreally kind of bringing home the
concept of we really want towork with you and make you just
as good in the IBD and gastrofield.
This is very new, milestones andAPP.
And so there's always thingsthat are coming out in terms of
(23:47):
helping escalate advancedpractice providers, not only in
IBD, but also ingastroenterology as a whole.
So I was really honored to be apart of that.
It was an amazing experience.
I met such wonderful advancedpractice providers from across
the country.
And we shared our experience.
Angelina Collins shared hers,Amy Stewart shared hers.
(24:07):
They were leaders in thisconference.
We spoke to them.
We encouraged them to networkand how to network, giving them
ideas.
We got experience from theattending physicians.
So it was, it was, it wasmagical for lack of a better
word.
And it's going to keep growing.
It's just a program that's goingto keep growing.
And so there's always thingsthat are growing to escalate us
(24:29):
as professionals and asproviders, which is super
exciting.
SPEAKER_02 (24:33):
You're at an academic center.
So does that mean you also attimes participate in research,
what that's happening within theIBD center?
SPEAKER_00 (24:39):
So we do, they have a lot of research in IBD.
The only thing I'm currentlyparticipating in is in a
registry study, but we do have alot of clinical trials.
Because I'm in clinic a lot, itkind of deters time for me to
participate in clinicalresearch.
Medicine is currently veryproductivity driven, especially
(25:01):
for a lot of advanced practiceproviders, which is a little
difficult for somebody who orall of us who are this
altruistic kind of we want tohelp people and be patient
advocates.
And at the same time, having toreally see more and more
patients.
And you know, so it's kind of abalance that we have to match.
And so I have to pick and choosekind of what I do.
(25:22):
And so I really focus in onclinical care.
But there are other APPs acrossthe country that do a lot of
research and have thatopportunity within their
institutions, community practicePAs as well.
But me personally, I, you know,happen to work for an attending
that has a lot of other things.
And so really relies on me to bethere for my patients.
SPEAKER_02 (25:46):
As somebody, I mean, you are seeing patients all the
time.
It sounds like this is, youknow, you're every single day
all the time.
At what point do you bring upclinical trials to somebody?
Because I know it seems like alot of people are like, well,
nobody, they didn't tell meabout it until I was like ran
out of options, right?
Or I didn't have insurance, orsomething kind of happens.
How do you determine when it'sbest to bring up a clinical
trial to people?
SPEAKER_00 (26:06):
A lot of it depends on where the patient is at in
their stage of the diseaseprocess.
We do at our academic centerbring it up to patients,
especially since we have trialsthat are ongoing.
The issue, too, and we also kindof have to decide who we bring
it up to because clinical trialsare wonderful.
But you also have to keep inmind that they have very strict
(26:29):
inclusion and exclusioncriteria.
And so when you get really thosecomplex perianal disease
patients or the patient that'shad multiple surgeries or have
tried and failed more and morebiologics, the criteria can be a
little bit narrowed.
But we do bring it up.
Patients ask often, and so we'reable to answer that.
(26:52):
For example, there was the stemcell research for you know
perianal disease and fistulas,which has shown efficacy in
patients with more simplefistulas, but they may not
qualify because they have veryadvanced perianal disease.
So patients ask, and also basedon, you know, when we have
trials and when we know oftrials, for example, we get
(27:13):
notified of other centers thatare actively recruiting patients
that, you know, with thiscriteria, and if we have that
patient, we may offer it.
But then also at the same time,we have to balance the fact of
how sick is the patient.
Do they need treatment rightaway?
Do they have the time to go tothat center, fill out the
paperwork, do the consents?
So it is a balance.
(27:34):
And so we tend to kind of focuswhen we have people that we're
directly working with to offerit a little bit more regularly.
But right now, our main goalusually is just how sick they
are and how quickly we can getthem treated.
SPEAKER_02 (27:47):
I, you know, and I know the other thing that comes
up is you know, it's great toparticipate in clinical trials,
but sometimes it means like morescoping and more visits to the
doctor.
And so if you're really, reallybusy, it might not make sense
because of just timing of stuffand how, you know, how much more
kind of you have to be in thedoctor's office potentially.
So it's true.
SPEAKER_00 (28:04):
And I have to say, you know, I just I love my IBD
patients.
You know, with IBD, there'salways there's this what we
teach people, it's it's got thisbimodal age of distribution.
So you kind of have peopleyounger and then they kind of
plateauzel and then like intheir 50s to 70s, so you kind of
have both ranges of thespectrum.
So we have a lot of people thatare just kind of getting started
(28:24):
in life, going to college.
We do adults, so most of themare, you know, young adults that
have finished high school, butthey may be going on to college,
they may go on to study abroad,they may do other things.
And then I've got my, you know,older population who's retired
and now they're doing things,and so they don't really want to
get caught up in that becausethey want to live their life.
(28:45):
And going to the doctors is kindof annoying, especially if
they're feeling well.
So, and lifestyle and how busypeople are also affects the
choices that we make for medicaltherapies, which is something
that I, you know, should pointout, right?
We try to pick things that aremore convenient for them.
Do they want just injectables?
Do they want pills?
So there's so many things toconsider.
But yes, when it comes toclinical trials, committing to
(29:07):
that can be difficult forpeople.
I can definitely understand thatas well.
SPEAKER_02 (29:12):
So, in in keeping with the therapies thing for a
little while, and I want to givethe caveat that we're not
offering any medical advice onthe show at all.
So it does seem, and you this iswhere you correct me when I'm
wrong, is it seems like some ofthe newer medications that are
coming up seem to be moreeffective for some of those
really tough cases of likeCrohn's disease with fistulas
(29:32):
and things like that.
Am I right on this?
Like I feel like I'm hearingthis, but I also don't have
Crohn's disease with fistulas.
And so I'm curious if you'reseeing that some of the newer
medications are actually helpfulto treat some of these tougher
cases of like Crohn's or allstiff cleas.
SPEAKER_00 (29:46):
So I'll say this.
I think what we are seeing more,I'll get to your question, but I
think one of the definite thingsthat we are seeing in terms of
our options for medical therapyand kind of what a lot of
companies.
Companies are really focusing onand really publishing is the
safety.
Patients are more and more andmore concerned about the safety
(30:08):
profile.
And so we are trying to reallyget more specific therapies to
kind of decrease that the sideeffect and the risks.
In terms of data for perianaldisease, I'm gonna be honest,
it's more difficult to recruitpatients for the clinical trials
because when they do, that's notpart of their inclusion
criteria, which is more perianaldisease.
(30:31):
We have a lot of case reportsand we have experience on it,
which is published.
And there is some data that iscoming out.
A lot of them are trying topublish data on perianal disease
and how it responds because wehave so much more experience
with the use of the anti-TNFs.
So we kind of always do that.
But as things, as patientsbecome refractory or it doesn't
(30:52):
work anymore, we're starting toutilize these therapies.
And yes, we are finding that ithas significant efficacy in
controlling their perianaldisease.
So we have new data that's gonnacome that has to come.
And you know, obviously we'restudying that all the time.
Perianal disease is complicated.
It is a phenotype that is morecomplicated to treat.
(31:14):
And so it's currently there'svery small, limited amounts of
studies that are done on smallergroups of patients, but
definitely they are all showingpromising results in the
treatment of perianal disease.
SPEAKER_02 (31:28):
I think one of the issues is you're right, like the
research tends to be the folksthat are not quite complicated,
and you know, because they don'tmake the cut on clinical trial
recruitment.
So, but I'm happy to hear that.
So understanding that insurancecompanies make things
challenging for you as aprovider and also for patients.
In an ideal world where that wasnot the case, you mentioned
(31:48):
saying, you know, talking tosomebody about their preferences
and blah, blah, blah.
You have somebody sitting inyour chair.
Insurance is no matter.
You don't have to worry aboutit.
What is the criteria that youtalk to with folks about their
treatment options and how yousort of help them figure out
what's their best one?
What would you talk to themabout?
What you ask them?
SPEAKER_00 (32:05):
It is a very extensive conversation that I
have with them.
And I really appreciate youbringing up the issue of
insurance companies because itreally establishes a very
difficult framework with whichwe have to work in.
Because we as providers want tofunction in that ideal world.
And then we get denials all thetime, and we always have to
(32:25):
justify why we're doing what.
But in an ideal world, if Idon't have to worry on whether
or not they have Medicare, whichis a huge inconvenience, or what
they have to consider, I ask thepatient what their biggest
concerns are.
So for example, most patientswill express the safety profile
(32:46):
is super important to me.
I don't want anything that couldincrease, you know, my
malignancy or anything likethat.
I also look at them and say,look, you know, you also have
psoriasis and you have arthritisor you have uveitis or, you
know, spondylosine ankylitis.
So I say to them, look, youknow, these therapies work,
(33:09):
these may not.
We talk about trying to use adrug that can solve all the
problems.
Another important aspect istheir lifestyle.
If you have somebody thattravels a lot, if you have
somebody that travels for work,an infusion every four weeks may
not work, every eight weeks maynot work because they don't know
where they're going to be intheir travel schedule.
(33:30):
So we may look at something likeinjectables or oral pills if
they have ulcerative colitis.
So it's really a conversationthat is very individualistic,
addressing the goals that aremost important for the patient
and trying to find the best drugat the same time that can kind
of meet not only where they arein their disease, but how to
(33:51):
best treat them in it and alsoaccommodate their lifestyle.
And also another important thingis pregnancy.
A lot of women want to know arethese drugs safe?
What drugs can I take that aresafe during pregnancy?
What are drugs that I could takethat are safe during
breastfeeding?
And so we have that conversationas well.
It's a very, veryindividualistic and
(34:13):
comprehensive conversation basedon all of those things.
My experience, safety andconvenience are the most
important because I thinkpatients kind of have the
confidence and assume that thedrugs are approved because they
work, right?
So they don't typically get intothe details of, you know, rates
of remission at three monthsversus 52 weeks, you know.
(34:36):
And I will tell them, you know,some drugs work quicker than
others.
If they're super sick, I'm gonnasay, look, this is the drug
that's gonna help you the most.
This is safe, this is not safeduring pregnancy.
So it's a very extensiveconversation and oftentimes more
than one conversation.
I'll give them a very kind of abasic idea and then we'll bring
them back in a week so that theyhave time to review the
(34:57):
medications a lot.
You know, IBD patients are very,very smart and they read and
they're very inquisitive andthey want to know.
And they know more than I do.
I have one patient who is veryinto holistic care, and he'll
be, Did you read about thisvitamin that, you know?
And so they want to know, and sothey challenge you.
So I really encourage them toread on it.
(35:18):
Then we'll bring them back andwe'll have the conversation all
over again, but now with better,more informed questions on the
patient's behalf.
So it's a great question.
And I wish I had like a one sizefits all, but that's the beauty
of IBD is that one size does notfit all.
But again, that eliminates theinsurance.
If we talk about insurance, iteliminates a lot of other things
for certain patients.
So it is something we have toinclude whether we like it or
(35:41):
not.
And the other thing I do want tobring up, since we're kind of
talking a little bit aboutmedicines, is the advent of
biosimilars.
And that is a whole other layerthat we have now because, you
know, several of our class ofdrugs have lost patents,
including uh infliximab andadolimimab, and then
Eustachinimab or Stellara hasnow biosimilars as well.
(36:02):
So patients are getting lettersthat their insurance is no
longer covering brand nameStellara and they're getting all
freaked out, but we really havebiosimilars at our disposal.
And so we try to comfort themand say, look, we've had
experience with these drugs eversince the anti-TNF family, and
we're very comfortable inswitching these drugs.
They have to be, you know,extensively studied in order to
(36:24):
get approval by the FDA.
They have to meet the samedosing, mechanism of action,
efficacy, safety, and adverseevents profile, or they wouldn't
get this certification.
So that adds another layer ofconversation because sometimes
we may order a drug and they'llthe insurance company will say,
okay, but we'll do thebiosimilar.
And so we have to, you know,provide that assurance to the
(36:46):
patient that we're comfortablewith the drugs.
And so therefore they should betoo.
SPEAKER_01 (36:50):
Do you think that the conversation is going to
change as we get closer andcloser to precision medicine?
Because I always think aboutthis, like lifestyle is always a
big part of the initialconversation.
Because if you're not going totake the meds, then they are not
going to work, right?
So, like you said, if you'retraveling for work, you can't do
(37:11):
the infusion every four weeksbecause you just don't know
where you're going to be.
But as we get closer toprecision medicine, I just think
about it like if you tell methat this is the drug based on
whatever criteria have beenestablished that has the best
chance of working, regardless ofthe other questions.
I don't know.
I feel like my lifestyle mayhave to take a back seat to take
(37:33):
in.
And let me just say this too,Jeanette.
I have a very complex case and avery rare case.
So I wasn't one of those peoplewho can say, like, I'm worried
about the safety profile.
I didn't care about that.
Like I wanted to get better andI've had multiple surgeries and,
you know, I have a J pouch withCrohn's disease.
Like I have a complex case.
So I didn't have the luxury ofbeing like, yes, I'm worried
(37:55):
about the safety profile of thisdrug.
I was like, I would like to notdie, please.
But I just think about that thatpeople that do have, and this is
gonna sound bad, but what I forme, people that do have the
luxury of being able to have theconversation and have options
like this.
I'm a little bit jealous of youall.
But also, do you think thatconversation will change as we
(38:16):
get closer and closer toprecision medicine?
SPEAKER_00 (38:18):
Oh, absolutely.
I totally do.
We're already seeing so manychanges with, you know, AI and
how it's going to affect it.
Patients have been asking for avery long time, you know,
because that's one of the bigissues in IBD right now is why
does this person have such awonderful response to an
anti-TNF and this other persondidn't?
(38:40):
You know, why did this persontolerate Antibio and this person
did not?
Or so there it's, you know,they're already doing it in
terms of, you know, cancertreatments.
And so we're kind of a littlebit behind the eight ball there.
So it is going to make a hugedifference.
I mean, to know that we couldeliminate hopefully that trial
(39:01):
and error, which is, you know,you've got to give it a try and
then we'll see if it works andplan for that scope in six
months to see if we can checkfor healing, because I don't
know if you, your phenotype isgoing to your genetics will
respond to this.
So we're very hopeful, justeliminating the trial and error,
being able to predict based onmarkers, how well you'll
(39:25):
respond, monitoring outcomes.
Even now, you know, there's appsout there in terms of so many
different things that you canmonitor.
So we can use these things interms of like communicating with
your provider in terms of likemonitoring tools.
So, yes, I'm very hopeful.
And that is gonna be superexciting when we do have that at
(39:46):
our disposal.
And it's gonna, I, you know, theway things are moving, it moves
so quickly.
It's gonna snowball.
And for me, probably it'll behard for me and my brain to keep
up because I'm getting older andlike I only have like a limited
amount of brain space left, andthen I'm gonna have to leave it
to the younger.
Oh, this is the true thing.
Like, I told my boss, like,seriously, how complicated do we
(40:06):
have to name these drugs?
Seriously, adolimumab,eustakinimab, betalismab, you
know, tofacidinib, all thesecrazy, there's not enough room.
I I don't have enough room.
So you can imagine with AI, mybrain is going to explode.
But yeah, if we can use it tonot only predict if they'll
respond, use it to predictpotential flares.
(40:26):
You know, they're also studyinguse of microbiome data.
So there's so many things thatare being studied, it's it's
gonna snowball, and you know,we're just gonna try and keep
up.
So, but yeah, I'm hopeful thatit will because we do have those
cases where by the time, so forexample, for the for the
patients that do becomemedically refractory, that they
(40:48):
do end up needing, for example,ulcerative colitis, a total
colectomy with potential Jpouch.
By the time that patients gottento the total colectomy, they've
already been in this for years,shuffling through therapies
because patients want to tryeverything before they go to
that, right?
Obviously, I understand thatnobody wants to give away their
innards, nobody wants theirinnards removed.
(41:08):
You want to do everything youcan to keep everything whole.
It makes sense, right?
And you don't want to be a youngperson having to go through an
awesome lot to deal withpsychosocially going through
that, you know, just their ownvanity, they're growing.
There's a lot of things.
So if we could eliminate so manyyears of people being sick
before ultimately they eitherneed surgery, that would be a
(41:30):
game changer for people.
So yeah, looking forward to tothat coming out as well.
I don't know if I'll bepracticing, but I might have to
quit.
But but yes, yes, it would befantastic.
SPEAKER_02 (41:43):
So when you have patients that are having surgery
and and they're going to havepieces of their, you know, their
small intestine removed and theymaybe have to have multiple
surgeries, my Crohn's diseasefriends, you know, have to have
multiple surgeries.
How are you counseling thosepeople on the potential lack of
absorption they're gettingbecause of having less small
intestines?
I mean, I think we see with ourJPouch friends like that, you
(42:06):
know, your body can kind ofchange itself and transform in
many miraculous ways.
But you're right, at some point,like if you're, you know, you're
cutting pieces away, cuttingpieces away.
As do you start to sort ofcounsel people to go to a
dietitian or do things differentor do things nutritionally to
kind of compensate for that?
Or do you do different labs tocheck?
SPEAKER_00 (42:23):
Oh, yes.
So definitely for beforesurgery, we have to have a
really in-depth conversation.
And a lot of this is also doneby the surgeons because
sometimes you just don't knowhow much bowel you're going to
have to remove.
So the most common surgery, forexample, in Crohn's is an
(42:43):
ileosecectomy.
Well, you might remove some ofthe small bowel and part of the
first part of the colon, butultimately, you know, they
always have to take out thediseased area and a certain
amount after.
Usually, one surgery, they'll dookay.
Patients will typically have alot of diarrhea initially
because of the inflammation.
(43:04):
I do have some couple, a couple,not a lot, of patients with
short gut, and it's a very, verydifficult thing to treat.
Nutrition-wise, they have somemicronutrient deficiencies.
The main thing is just thediarrhea, right?
They just have a lot ofdiarrhea.
The good news about the smallbowel is that we do have about,
(43:25):
you know, 20 feet of it, soabout six to eight meters of it.
And so let's say you have like800 centimeters of small bowel.
And then in order for you toactually qualify for short gut,
you need to have less than 200centimeters.
So you're talking about removinga huge chunk.
So it is pretty amazing.
But I do counsel them, you aregoing to have potentially some
(43:48):
diarrhea, especially as theinflammation gets better.
If it's somebody's secondsurgery, we always talk about,
even with the first, we have totalk about the risk of adhesions
because that you may have awonderful surgery and then have
scar tissue down the line thatmay lead you to susceptible to
small bowel obstructions.
Short gut is difficult, but youneed a, and again, when the
(44:10):
surgeon goes in, there may belesions, there's areas of
inflammation that they may nothave seen, but typically they
can tell, but it's ultimatelydifficult until the end of the
surgery when you have the actualspecimen.
But even some removal can leadto different symptoms in
different patients.
So I do counsel them on it, butI will say I had a patient
(44:31):
recently that had a lot of smallbowel removed through disease,
and they're doing quite well ofthe small intestine.
But yes, we definitely monitorvitamins like B12, we monitor
iron micronutrients such asmagnesium and potassium and
phosphorus if they're havingdiarrhea.
And we tell them that this maybe a risk, especially in the
initial post-op period, and wejust have to give it time to see
(44:53):
how it ends up.
But yes, it's definitely a verydifficult conversation to have.
The surgeons have it a littlebit more who are able to talk a
little bit more in detail abouthow much they suspect they may
remove.
But ultimately, patients comeback to the GI, right?
When it comes to them having thediarrhea or, you know, they're
not absorbing as well.
I have some patients that needongoing supplements with
(45:13):
magnesium infusions becausethey're losing a lot of
magnesium.
So it is very difficult.
And I have a lot of thesepatients with this short gut are
very, they depend onantidiarrheals to not make them
normal, but just to get throughthe day.
And that's really difficult tosee as well.
SPEAKER_01 (45:32):
Thank you so much for answering all of our very
detailed and clinical questions.
SPEAKER_00 (45:39):
I did have one comment.
I know that we talked about alittle bit, and I don't mean to
interrupt, but since we'recoming to the end, I do want to
bring out something that's beenkind of not so new, but maybe
patients may or may not knowabout in IBD and pregnancy.
Again, we talked a little bit.
Most most of the medicines arevery, very safe in both
pregnancy and breastfeeding.
There is a recommendation that Ithink women should know about
(46:01):
that has been uh published nowin our guidelines is that women
that become pregnant with IBDhave a slightly higher risk of
pre-eclampsia and eclampsia.
And so now there is arecommendation that women should
start low dose aspirin betweenweeks 12 and 16 and throughout
the rest of the pregnancy tokind of decrease that risk.
(46:22):
That is one of the newerrecommendations, something that
they should talk to about withtheir GYN.
And then also just another thingwith IBD and pregnancy, which I
find, you know, super importantbecause I think that women, you
know, want to have babies.
And if they don't, that'stotally fine.
But we do see a lot of voluntarychildlessness in women because
of the questions that they haveabout pregnancy and the things
(46:44):
that they don't know aboutpregnancy, and that but just
means that they may not beproperly educated.
IBD women can get pregnant ifthey choose to.
We can talk have conversationsabout fertility, even women with
J pouch if they choose to.
There's always the IVF route.
Getting pregnant with a J pouchis more of a scarring issue of
the pelvic area versus theireggs not being, you know, good.
(47:06):
So I encourage patients early onto speak to I speak to my
patients about it, but you know,speaking to their GYN because we
do refer early on to maternalfetal medicines to have that
pre-pregnancy discussion andeducation.
But anyway, I wanted to makesure that they knew about that
aspirin recommendation.
It's kind of been, you know,rather new for us.
And so I want to make sure thatthey're aware to ask about it
(47:28):
and discuss it with their GYNand OB.
Yeah, and then the other reallyimportant thing that women need
to know, and I stronglyemphasize is that the
recommendation is that womenthat are thinking about getting
pregnant need to be in clinicaland endoscopic remission about
three to six months prior toconception.
That is super important becausethat will decrease your risk of
(47:50):
complications, including lowbirth weight and preterm
delivery that may occur if youhappen to get pregnant while
you're flaring.
So, to optimize the best resultsduring pregnancy, you really
should have endoscopic andclinical remission three to six
months before conception.
SPEAKER_01 (48:06):
Thank you so much, Jeanette, for coming on the show
and sharing so freely and openlyyour experience and especially
about all the medications andpatient care.
I know that a lot of ourlisteners are gonna get a lot
out of this episode, butunfortunately, it is time for me
to ask you our last question.
And that is, what is the onething you want the IBD community
(48:26):
to know?
SPEAKER_00 (48:27):
I think that the most important thing that I want
them to know is it the IBD fieldis growing so much in terms of
therapies, possibilities,treatments.
We're really honing in ondisease states much better.
We're really treating thepatient more comprehensively,
(48:48):
including diet and kind of amore holistic approach and a
very patient-centered approachto patients.
And I really want to encourageyou to talk to your doctors and
APPs about any concerns that youhave.
I mean, one of the things thatis most important to me is that
patient-provider relationshipand that trust.
(49:08):
And you have to have that withyour provider and just know that
providers they are busy, but youare the most important thing to
us.
If you were to attend as apatient the conferences that we
attend, you would see how muchwe do care about patients and
patient care.
So please feel comfortable toask us about any topic that you
(49:29):
may have because the worst thingfor an IBD patient or any
patient is to not have theirquestions answered and to not
know.
Knowing and having thatknowledge empowers you as a
patient, and you deserve thatright.
So never be afraid to askquestions.
Don't think that you're takingup too much of our time.
It is your right to askquestions.
(49:51):
It's growing.
Now is the best time in theworld to have IBD.
I mean, it is really amazing.
And as a provider, I'm excitedto be a part of it as I see the
changes and the growth as wehave new mechanisms of action on
the horizon as well.
So quail your anxieties byspeaking to providers.
Attend these podcasts, go topatient conferences when
(50:15):
available.
There is a huge community outthere, and it really, really,
really, really is empowering.
One more thing.
Join the Crohn's and ColitisFoundation.
I have to say, that is ournational organization.
And there are so many wonderfulopportunities and things within
the Crohn's and ColitisFoundation.
And I'll do one shout out to anamazing thing for any parent
(50:36):
with children with IBD.
Crohn's Colitus offers thisamazing camp called Camp Oasis.
It is for children with IBD.
And, you know, oftentimes,especially having IBD or any
chronic disease can be very,very isolating as an adult.
Imagine for a child that justwants a normal childhood, be a
part of Crohn's and colitis.
(50:56):
There's so many ways that youcan, so many things that you can
get off their website, so muchinformation and so many
activities that would onlybenefit you as a patient as
well.
SPEAKER_02 (51:05):
That's a great shout-out.
SPEAKER_00 (51:06):
We love Camp Oasis.
SPEAKER_02 (51:07):
We're big fans of Camp Oasis.
Oh, good over here.
So yes, yeah, great shout-out.
Thank you.
Such great advice.
Absolutely love it.
So thank you.
Thank you, Jeanette, so much forcoming to spend the evening with
us and sharing all of yourwisdom and knowledge.
And thank you, everybody else,for listening to the show.
And cheers, everybody.
SPEAKER_00 (51:24):
Thank you guys.
Cheers.
I'm really excited to have beenhere.
Thank you so much.
Hi, this is Jeanette Valone.
If you enjoyed this podcast,please share it with all of your
friends.
Please subscribe and give us apositive rating.
Thank you so much.
Hi, I'm Alicia.
And I'm Robin, and you'relistening to Bow Moments, the
podcast sharing real talk aboutthe realities of IBD.
Sir.
This week we talked to JeanetteViolone.
Jeanette is a physician'sassistant at the University of
California Irvine IBD Center.
We talked to her all about howthe PAs work within the IBD
(00:22):
Center and how they support thephysicians and the rest of the
team.
We talked to her about treatmentchoices and how she works with
patients to make the rightselection and to give them all
the education that they need tochoose the right thing for them.
We talked to her about pregnancyand inflammatory bowel disease
and her special interest thereand the advice that she has for
patients and so much more.
We know you'll enjoy thisconversation just as much as we
(00:44):
did.
Cheers.
SPEAKER_01 (00:48):
Hi everybody, welcome to Bell Moments.
SPEAKER_02 (00:50):
This is Robin.
Hey everyone, this is Alicia,and we are so excited to be
joined by Jeanette Villon.
Jeanette, welcome to the show.
SPEAKER_00 (00:58):
Thank you so much for having me.
I'm so excited and humbled andhonored.
And I'm really excited to behere with you guys today to have
this casual fun conversationabout IBD and what's going on.
So I'm really excited.
SPEAKER_02 (01:11):
Well, we are very, very excited to have you and to
learn all about you in just asecond.
But our first veryunprofessional question is what
are you drinking?
SPEAKER_00 (01:18):
I don't know if that's a great question.
And I'm probably a really,really bad example because I
should practice what I preach,which is drink water and it's so
healthy for you and hydrating.
And I hate water.
Oh my God.
I wish I loved it.
I try so hard to drink it.
I really do.
But I'm currently drinkingGatorade Zero.
(01:40):
You know, I kid myself becauseit has no sugar, but it's
probably bad sugar.
But yeah, I'm drinking GatoradeZero and it's the glacier
freeze.
That's that's my choice.
I wish I could say I wasdrinking water with ice with a
touch of lemon, but no.
SPEAKER_01 (01:59):
I feel like a lot of people who listen are gonna feel
justified.
They're gonna be like, yes, hereis a medical professional saying
that they don't like water.
SPEAKER_00 (02:07):
Yep.
SPEAKER_01 (02:07):
Robin, what about you?
I am drinking ice water, but Ialso have coffee though.
I will drink coffee all hours ofthe day, even though it's
nighttime.
I don't care.
SPEAKER_00 (02:18):
Oh, I'm the same way.
I I love my coffee too.
SPEAKER_02 (02:21):
What about you, Alicia?
I am drinking a spindriftspiked.
The sparkling water is spiked.
This is uh real squeezedgrapefruit.
So I'm excited.
SPEAKER_00 (02:31):
That's exciting.
I haven't even opened it.
If I would have known, I wouldhave brought like a couple like
with my favorite alcohol if I ifI do drink, because I'm more
into the sugar than the alcohol.
So like a Bailey's or mojitowith extra mint, totally my
favorite.
I do love a mojito.
SPEAKER_01 (02:47):
Yes, I do love a mojito.
SPEAKER_00 (02:49):
Mint is very anti-inflammatory for the gut,
so I feel that it's I'm actuallynourishing my teeth.
And then margaritas.
Those are kind of oh, and Malibubabies.
I love those too.
So it's a Malibu baby's.
I don't know what that is.
It's coconut rum with pineapplejuice and a splash of cranberry.
And I'm very particular becausesometimes bartenders will
(03:12):
instead of pineapple juice,we'll put in grapefruit juice,
not the just not the same drink.
So it has to be pineapple and atouch of cranberry, and it is so
tasty.
SPEAKER_02 (03:21):
So, Jeanette, next question for you is what is your
connection to the IBD community?
What brought you into this as aprofession?
SPEAKER_00 (03:28):
So I'm gonna be honest.
So I've been a physicianassistant for many years.
I graduated PA school in 2001,and then initially my first job
out of practice, out of school,was a job at Mount Sinai in New
York, New York.
I was actually living therebecause I went to school at
Cornell and I lived in New YorkCity for a few years.
(03:49):
It was fantastic.
And I actually ended up gettinga job at Mount Sinai, and I
started my world in myexperience, if you will, in
transplantation.
So I worked in liver transplantand intestinal transplant
initially.
Back then, my experience withliver transplant was fantastic.
I will say liver transplant,this was at that time in the
(04:11):
early 2000s.
I'm sure it has changed.
Success rates were pretty low.
I'm sure they've gotten muchbetter.
But at the time, to find outthat this was an option for
patients that had short gutsyndrome or other issues with
their gut to actually have anintestinal transplant was pretty
amazing.
So I got a lot of experiencethere.
And then I ended up at UCI whenI ended up coming home to
(04:33):
California.
I started in UCI, uh, working inhepatobiliary and liver kidney
transplant.
So I did that for many years.
It was amazing.
I got really comfortable withworking with a lot of
immunosuppressive medications,and I'm very clear on using the
word immunosuppressive becauseas I talk later, IBD medical
(04:56):
therapies, a lot of patientstruly believe that they're
immunosuppressed when really alot of our all of our medicines
are really immune-targeted,which is a difference.
Outside of prednisone, ofcourse, which we use, which is
immunosuppressive, all of ourtherapies are really
immune-targeted.
So that really impacts our carein a much more positive way in
(05:16):
terms of side effects and thingslike that.
And then in 2014, this kind ofjust landed on me.
I had my daughter Eva when in2012, and I wanted to work a few
less hours and be have a littlebit more flexibility and kind of
started putting it out thereeven at UCI that I was looking
for something different.
And that's when I met Dr.
(05:37):
Nemisha Parek.
She is currently the IBDdirector at UCI.
She's the one that establishedthe program, created the
program, and has built theprogram.
And I did explain to her, quitehonestly, I was looking for
something a little bit moreflexible with less hours.
So I work about 32 hours a week,uh a little more in terms of
admin time, but it's flexible,which is what I needed.
(05:57):
And, you know, it's one of thethings I tell a lot of people, I
wish I would have started this alot sooner when I was single and
had a little bit more timebecause I do realize that IBD is
an amazing field.
It really started growing a lotwhen I entered the profession.
And since then it has grownreally exponentially.
And so that's kind of how Ilanded in it.
You know, to think back, Istarted in October of 2014.
(06:21):
And if we can imagine kind ofthe spectrum and of the
medications that we had, wereally had the anti-TNFs to work
with, which included infliximab,adolimimab, and then we worked
with Certalismab and thenSymphony, which I can't remember
the brand name because honestly,we weren't using it that much.
(06:42):
And then we also had obviouslythe immunomodulators, including
the thiopurines andmethotrexate.
And then we had gottenvitalismab in 2014.
And so that's kind of where Istarted.
And then since then, it hascatapulted to a bunch of new
medicines, which I'm sure we'llgo to get into later.
SPEAKER_01 (07:03):
Besides the medications, what other changes
have you seen in the past decadefrom your point of view in
clinical practice?
Because there's so much researchin IBD, but like how does that
translate into actual patients'lives every day?
Because it has to go through theclinic, right?
To get there.
SPEAKER_00 (07:22):
Yeah.
Well, let me say first, when Ifirst started, what makes IBD so
different and what was so kindof exciting about it and so
different for me, for me, is Iwanted to get in there and be
like, okay, what's thealgorithm?
What do you do?
Tell me steps one, two, three,kind of how do we do that?
(07:42):
And it was easier, I think,looking back back then, because
we didn't have as many therapiesat our disposal.
So what we've seen in the lastdecade or so is such an
expansion of therapeutic optionsthat the discussion of
positioning drugs has become alot more complicated.
(08:04):
And so there is always a lot ofresearch.
We have a new classes of drugsthat we are now using.
Initially, for example, afterbetalismab came out, we've had
the, which is an anti-integrin,we've had interleukin 12 and 23
blockers, we've had JACinhibitors, we've had
interleukin 23 blockersexclusively, and S1Ps as well.
(08:30):
And so we have so many drugsthat the discussion of
positioning has really become anissue and how you pick the best
therapy for a patient with IBD,how we can incorporate the use
of knowing the patient'spotential extraintestinal
manifestations that they mayhave and seeing what we can
(08:52):
treat with one drug that maytreat several things versus
various medications for each ofthe individual conditions.
So in clinical practice, anotherthing that I think has grown a
lot for me personally as anadvanced practice provider.
Again, I'm a physicianassistant, but within the
umbrella, it also includes nursepractitioners.
(09:13):
Is we've really gone a long wayto get information to our
advanced practice providers,which have really become crucial
in terms of the day-to-daymanagement of patients as
physicians work to do otherthings, whether it's doing their
procedures, whether it'sparticipating in conference and
(09:35):
their speaking events orconferences that they may
attend.
Really, it's the advancedpractice provider that we're
seeing a lot more readily on thefront lines of IBD.
And when I first started, therewasn't a lot of avenues and
there wasn't a lot ofopportunities where APPs were
given direct information to usas APPs.
(09:58):
We would attend conferences muchlike the physicians, but what
has really changed over the lastdecade is kind of this
partnership between physiciansand APPs, where they have really
escalated us in terms ofproviders for inflammatory bowel
disease.
So, for example, we have the GAPconference, which is huge.
It's the Gastro and HepatologyAdvanced Practice Provider
(10:20):
Conference.
It's for APPs, taught by APPs,led by APPs, for other APPs.
We didn't have that.
This is about eight years old.
And we are now teaching eachother about inflammatory bowel
disease as well as other GIconditions.
And so I think it's reallyimportant because the team for
(10:41):
inflammatory bowel disease isreally growing and becoming much
more knowledgeable.
We've got another advancementover the last 10 years is a huge
focus, not only on medicaltherapy, but the comprehensive
care of the patient, includingdiet, psychosocial aspects,
having patients meet with socialworkers, having them meet with
(11:02):
dietitians, registereddietitians.
Me personally, I did a fantasticprogram through Cedar Sinai
where it was called IBD andDiet.
And we analyzed various dietsthat patients often ask about
the, you know, specificcarbohydrate diet or the CDED
diet, the Crohn's diseaseexclusion diet.
So how we managed to incorporatethat in our clinical practice.
(11:25):
So we're really looking at thepatient as a whole.
We also have a social workerthat they meet with and you
know, addressing some importantissues in IBD, including anxiety
and depression.
So kind of really focusing on amore holistic approach to care
in IBD, not just prescribingmedical therapies.
SPEAKER_02 (11:44):
I love that.
I love that that program is soholistic and really looking at
every aspect of people livingwith in their disease.
So I'm going to back you up ahair because you mentioned, you
know, sort of PAs, NPs, nursepractitioners.
Some people may not necessarilyknow what that is.
I'm guessing most peopleprobably have encountered a PA
or an MP.
But would you mind just talkinga little bit about how your
(12:06):
profession, how the PAprofession differs a little bit
from like the physician side ofthings, but how you work
together?
SPEAKER_00 (12:12):
So that is a really good question.
So there is a difference.
So for a physician assistant,you know, obviously physicians
go through, they get theirbachelor's, they go do a medical
school, which is four years,then they do a residency, you
know, whatever specialty theywant to do.
And more often than not, we'reseeing a lot more highly
specialized physicians and theydo fellowships, whether it's a
(12:35):
fellowship in gastroenteralogy,you know, anesthesiology, if you
want to, you know, be a surgeon.
So there's different programsand specialties that they do.
They have a very prolonged uheducation.
Our physicians are very, verywell trained.
And I will say this I respectour physicians, and I'm also
very clear in that I am not aphysician.
(12:57):
And I think that's veryimportant when you encounter
APPs, is that as wonderful as weare, it's very important to kind
of know our place in the teamand our relationship with our,
you know, physician colleagues.
That there are going to besituations where I encounter
that I may not understand or Imay need a little bit more
guidance.
And so I never want to gooutside of that space that I'm
(13:21):
comfortable for a matter of ego.
Patient safety and, you know,providing the best patient care
is more important to me than myego or coming up with something
that I may not understand.
And so I have no problem intelling patients, hey, you know,
let me discuss this with myattending and I'll get back to
you.
And so that also is reallyimportant in building trust and
(13:43):
rapport for those patients that,exactly, like you said, that may
not have experience with aphysician assistant or a nurse
practitioner.
The physician assistanteducation is different.
We do get a bachelor's and thereit's a master's.
Most programs now are master'sprograms.
When I went to school, it wascertific a certificate program,
but we have advanced now andthere's master's programs.
(14:05):
And later I did go and get anonline master's through Toro,
but now most programs are amaster's.
And it's a three and a half yearprogram where we kind of mimic
the medical school model.
We have a didactic session,which is about a year and a half
of didactic books, chemistry,basic science, all of that.
(14:27):
And then a year and a half ofinternships or rotations.
And, you know, in that youdevelop your thesis and you have
your masters.
So our education mimics the kindof the medical school model, but
in less time, with the idea thatwe get exposed to all aspects of
medicine and then we get a job.
(14:48):
And at that job, we get on handstraining and expertise as you go
along and get more practice.
The nurse practitioner model isa little bit different.
I can't speak 100% on them, butthey are nurses before they
advance their degree to nursepractitioners.
It adds a very authentic kind offield to nurse practitioners.
They are very patient focused.
(15:09):
They kind of uh have a differentsort of education, but
essentially we at the end of theday, we all do patient care
where we can prescribetherapies, order tests and labs,
interpret exams, and you know,make appropriate diagnostic
evaluations.
So we kind of get there in adifferent way, but we ultimately
have the same goal.
SPEAKER_02 (15:29):
Thank you so much for that explanation.
I mean, I know I have definitelyseen a nurse practitioner, I've
seen a PA, both really fantasticexperiences.
And I always felt like I wasreally listened to, which I so
it sounds like that's really animportant piece of kind of your
education is that real likepatient-centric aspect of
things.
SPEAKER_00 (15:45):
It's funny you said that because I actually have had
several patients who have saidto me, like, I really feel like
I somebody's listening to mebecause I do make that effort
into listening.
Because I, for example, haveseen patients that, you know,
they have IBD and their IBD istotally in remission, both
clinically and endoscopic.
They meet all the guidelines,you know, normalization of
(16:07):
inflammatory markers, butthey're still having six to ten
bowel movements a day.
So they have diarrhea orwhatever.
And they have seen gastros formany years who've managed their
IBD, but the patient still hasdiarrhea.
So that's when I say, okay,well, that's a totally different
thing.
We now have to delve into thatbecause, you know, not all
(16:27):
diarrhea is inflammatory boweldisease related.
And so I'll evaluate them andask them questions, and they've
said to me, you know, which isvery nice for me to hear, but at
the same time, it kind of givesyou an idea that when somebody
becomes so focused, sometimes weignore other things.
And she's like, that's like thefirst time somebody has really
listened to me.
And so it's it's it's good.
(16:48):
It's, I think, a wonderfulquality that providers should
give their patients, but maybenot all do.
So anyway, but yes.
SPEAKER_02 (16:55):
Well, I think you get that in every profession.
There's some people that do itdifferently than others, and so
but I'm it sounds like you youhave a great patient care model.
Um I am curious a little bitmore about the you mentioned the
APP training that's been aroundfor eight years.
And I I'm sorry, I did not writedown the name, and so now it's
out of my brain.
I think that's super cool.
How did that get started?
And then is there like, does ithave a theme every year?
(17:17):
How do you decide what's goingto be in the training session?
Has it evolved so that you havekind of like newer PA training
or APP training and then likepeople who have been in the
field for a little bit longer?
Tell me more about this.
SPEAKER_00 (17:28):
Well, thanks for asking.
Yeah, it's something that I'mreally proud of that our fellow
colleagues have made.
There is a conference that iscalled the Gastro and Hepatology
Advanced Practice ProviderConference.
And GAP has really grown.
We just went through our eighthyear or ninth.
(17:49):
I just spoke at it and I can'tremember which one is which.
Basically, it started as a smallgroup of APPs that were
realizing that we were notgetting the appropriate training
in gastroenterology as a whole,because there's a lot of new
(18:09):
grads, but there's a big stepfrom graduation to becoming an
experienced provider.
And while, you know, physiciansget a lot more training in that
because they have residency andfellowship and a lot of things,
you know, physician assistantskind of graduate from their
degree and then they move on topatient care.
(18:30):
So somebody has to train them.
And we were realizing that therewas a big deficit in our
education in gastroenterology.
So there are a lot of foundingmembers, including, I don't
know, back then it was ElizabethEvans that I worked with, Sharon
Dudley Brown, who's out of JohnsHopkins.
Through my years, I have metsuch amazing advanced practice
(18:50):
providers.
And they established this groupso that we could teach each
other.
And that makes a big differenceto be taught by each other.
There's a lot less, you know, atthe end of the day, physicians,
you know, they teach themselvesin certain ways.
And sometimes a lot of,especially new grads, might have
more insecurities about askingquestions or approaching doctors
(19:13):
about certain things.
So this conference startedbasically out of that idea.
And I have spoken at multipleconferences and it's set up to
where there's a big plenarysession.
We have committees within GAP.
There's educational committeesand a lot of different
committees that make it happen.
So I really want to give a shoutout to all of the members
(19:35):
because I haven't participatedin that aspect, but it is a lot
of work.
These people put a lot of timeof their own to establish the
appropriate curriculum and findadequate and experienced
speakers that they can contractto really provide that not just
education, but experience thatthey bring to the table.
(19:57):
So I have spoken in the pastabout inflammatory bowel
disease, Crohn's disease,ulcerative colitis.
I've done a talk on pauchitis,I've done a talk on ostomies,
but we also have hepatology,which is a huge field.
We have advanced practiceproviders that specialize in
esophageal disorders.
And so they look for expertsamongst advanced practice
(20:19):
providers across the country.
And those experts teach otherAPPs that are interested in
learning.
And that could vary from newgrads.
There's a program within GAPthat's called IBD Bootcamp.
And it's a whole session on allthe information IBD.
And so I'm extremely proud to beinvited as a faculty speaker
(20:41):
there.
But I won't take the creditbecause it took a lot of behind
the scenes work from a lot ofAPP pioneers that have really
grown this into a program whereevery year we're seeing more and
more advanced practice providersattending.
So, and they kept it goingthrough COVID, and they're
always coming up with innovativetopics to keep us up to date on
(21:03):
the most updated information.
So I really, you know, want toencourage all APPs to attend
that practice in Gastro and, youknow, focus on our education a
lot more.
That's super cool.
SPEAKER_02 (21:15):
I and I agree with you.
I think having you teach eachother is such a great way for
people to learn.
Has this sparked additionalchange in things like the AGA,
like DDWs, so digestive diseaseweek conference or the AGA
conferences or any of theseother like big conferences that
happen?
Have you noticed has that alsokind of changed how they are
handling education or howthey're doing things?
SPEAKER_00 (21:36):
Yes, it really has.
Like I said before, there hasbeen an evolution, I think, in
the partnership and relationshipbetween physicians and their
advanced practice providers.
I'm very fortunate.
I've always had a veryforward-thinking physician, Dr.
Nemisha Parek, who alwaysconsidered me a partner.
I didn't work for her.
(21:57):
She was always my partner inthis.
We were partners.
But we have seen it.
So the ACG as well as the AGAnow have committees for and
about advanced practiceproviders.
And they're really trying toincorporate us into that system
as well, as they realize that weare really on the front lines
(22:20):
and we allow physicians to doother things while we're the
ones that kind of have a lotmore face-to-face time with
patients.
And so they have recognized it alot.
As a matter of fact, just on apersonal note, I was asked to be
a part of just this last weekendwhen I went to GAP, it's called
(22:40):
the Milestones APP LeadConference.
And I was invited to be afaculty guest.
And it was spearheaded byamazing IBDologists, Anita
Aspali, Dr.
Ben Cohen, Dr.
Christina Ha at the Mayo Clinic,along with Angelina Collins and
(23:01):
Amy Stewart, both nursepractitioners in IBD and Gastro.
And they basically invited PAsand NPs across the country that
are doing IBD and brought themin to teach them leadership
skills, teach them how to createa presentation, educate them on
(23:24):
other avenues that we canpursue, whether it's in
education or speaking, andreally kind of bringing home the
concept of we really want towork with you and make you just
as good in the IBD and gastrofield.
This is very new, milestones andAPP.
And so there's always thingsthat are coming out in terms of
(23:47):
helping escalate advancedpractice providers, not only in
IBD, but also ingastroenterology as a whole.
So I was really honored to be apart of that.
It was an amazing experience.
I met such wonderful advancedpractice providers from across
the country.
And we shared our experience.
Angelina Collins shared hers,Amy Stewart shared hers.
(24:07):
They were leaders in thisconference.
We spoke to them.
We encouraged them to networkand how to network, giving them
ideas.
We got experience from theattending physicians.
So it was, it was, it wasmagical for lack of a better
word.
And it's going to keep growing.
It's just a program that's goingto keep growing.
And so there's always thingsthat are growing to escalate us
(24:29):
as professionals and asproviders, which is super
exciting.
SPEAKER_02 (24:33):
You're at an academic center.
So does that mean you also attimes participate in research,
what that's happening within theIBD center?
SPEAKER_00 (24:39):
So we do, they have a lot of research in IBD.
The only thing I'm currentlyparticipating in is in a
registry study, but we do have alot of clinical trials.
Because I'm in clinic a lot, itkind of deters time for me to
participate in clinicalresearch.
Medicine is currently veryproductivity driven, especially
(25:01):
for a lot of advanced practiceproviders, which is a little
difficult for somebody who orall of us who are this
altruistic kind of we want tohelp people and be patient
advocates.
And at the same time, having toreally see more and more
patients.
And you know, so it's kind of abalance that we have to match.
And so I have to pick and choosekind of what I do.
(25:22):
And so I really focus in onclinical care.
But there are other APPs acrossthe country that do a lot of
research and have thatopportunity within their
institutions, community practicePAs as well.
But me personally, I, you know,happen to work for an attending
that has a lot of other things.
And so really relies on me to bethere for my patients.
SPEAKER_02 (25:46):
As somebody, I mean, you are seeing patients all the
time.
It sounds like this is, youknow, you're every single day
all the time.
At what point do you bring upclinical trials to somebody?
Because I know it seems like alot of people are like, well,
nobody, they didn't tell meabout it until I was like ran
out of options, right?
Or I didn't have insurance, orsomething kind of happens.
How do you determine when it'sbest to bring up a clinical
trial to people?
SPEAKER_00 (26:06):
A lot of it depends on where the patient is at in
their stage of the diseaseprocess.
We do at our academic centerbring it up to patients,
especially since we have trialsthat are ongoing.
The issue, too, and we also kindof have to decide who we bring
it up to because clinical trialsare wonderful.
But you also have to keep inmind that they have very strict
(26:29):
inclusion and exclusioncriteria.
And so when you get really thosecomplex perianal disease
patients or the patient that'shad multiple surgeries or have
tried and failed more and morebiologics, the criteria can be a
little bit narrowed.
But we do bring it up.
Patients ask often, and so we'reable to answer that.
(26:52):
For example, there was the stemcell research for you know
perianal disease and fistulas,which has shown efficacy in
patients with more simplefistulas, but they may not
qualify because they have veryadvanced perianal disease.
So patients ask, and also basedon, you know, when we have
trials and when we know oftrials, for example, we get
(27:13):
notified of other centers thatare actively recruiting patients
that, you know, with thiscriteria, and if we have that
patient, we may offer it.
But then also at the same time,we have to balance the fact of
how sick is the patient.
Do they need treatment rightaway?
Do they have the time to go tothat center, fill out the
paperwork, do the consents?
So it is a balance.
(27:34):
And so we tend to kind of focuswhen we have people that we're
directly working with to offerit a little bit more regularly.
But right now, our main goalusually is just how sick they
are and how quickly we can getthem treated.
SPEAKER_02 (27:47):
I, you know, and I know the other thing that comes
up is you know, it's great toparticipate in clinical trials,
but sometimes it means like morescoping and more visits to the
doctor.
And so if you're really, reallybusy, it might not make sense
because of just timing of stuffand how, you know, how much more
kind of you have to be in thedoctor's office potentially.
So it's true.
SPEAKER_00 (28:04):
And I have to say, you know, I just I love my IBD
patients.
You know, with IBD, there'salways there's this what we
teach people, it's it's got thisbimodal age of distribution.
So you kind of have peopleyounger and then they kind of
plateauzel and then like intheir 50s to 70s, so you kind of
have both ranges of thespectrum.
So we have a lot of people thatare just kind of getting started
(28:24):
in life, going to college.
We do adults, so most of themare, you know, young adults that
have finished high school, butthey may be going on to college,
they may go on to study abroad,they may do other things.
And then I've got my, you know,older population who's retired
and now they're doing things,and so they don't really want to
get caught up in that becausethey want to live their life.
(28:45):
And going to the doctors is kindof annoying, especially if
they're feeling well.
So, and lifestyle and how busypeople are also affects the
choices that we make for medicaltherapies, which is something
that I, you know, should pointout, right?
We try to pick things that aremore convenient for them.
Do they want just injectables?
Do they want pills?
So there's so many things toconsider.
But yes, when it comes toclinical trials, committing to
(29:07):
that can be difficult forpeople.
I can definitely understand thatas well.
SPEAKER_02 (29:12):
So, in in keeping with the therapies thing for a
little while, and I want to givethe caveat that we're not
offering any medical advice onthe show at all.
So it does seem, and you this iswhere you correct me when I'm
wrong, is it seems like some ofthe newer medications that are
coming up seem to be moreeffective for some of those
really tough cases of likeCrohn's disease with fistulas
(29:32):
and things like that.
Am I right on this?
Like I feel like I'm hearingthis, but I also don't have
Crohn's disease with fistulas.
And so I'm curious if you'reseeing that some of the newer
medications are actually helpfulto treat some of these tougher
cases of like Crohn's or allstiff cleas.
SPEAKER_00 (29:46):
So I'll say this.
I think what we are seeing more,I'll get to your question, but I
think one of the definite thingsthat we are seeing in terms of
our options for medical therapyand kind of what a lot of
companies.
Companies are really focusing onand really publishing is the
safety.
Patients are more and more andmore concerned about the safety
(30:08):
profile.
And so we are trying to reallyget more specific therapies to
kind of decrease that the sideeffect and the risks.
In terms of data for perianaldisease, I'm gonna be honest,
it's more difficult to recruitpatients for the clinical trials
because when they do, that's notpart of their inclusion
criteria, which is more perianaldisease.
(30:31):
We have a lot of case reportsand we have experience on it,
which is published.
And there is some data that iscoming out.
A lot of them are trying topublish data on perianal disease
and how it responds because wehave so much more experience
with the use of the anti-TNFs.
So we kind of always do that.
But as things, as patientsbecome refractory or it doesn't
(30:52):
work anymore, we're starting toutilize these therapies.
And yes, we are finding that ithas significant efficacy in
controlling their perianaldisease.
So we have new data that's gonnacome that has to come.
And you know, obviously we'restudying that all the time.
Perianal disease is complicated.
It is a phenotype that is morecomplicated to treat.
(31:14):
And so it's currently there'svery small, limited amounts of
studies that are done on smallergroups of patients, but
definitely they are all showingpromising results in the
treatment of perianal disease.
SPEAKER_02 (31:28):
I think one of the issues is you're right, like the
research tends to be the folksthat are not quite complicated,
and you know, because they don'tmake the cut on clinical trial
recruitment.
So, but I'm happy to hear that.
So understanding that insurancecompanies make things
challenging for you as aprovider and also for patients.
In an ideal world where that wasnot the case, you mentioned
(31:48):
saying, you know, talking tosomebody about their preferences
and blah, blah, blah.
You have somebody sitting inyour chair.
Insurance is no matter.
You don't have to worry aboutit.
What is the criteria that youtalk to with folks about their
treatment options and how yousort of help them figure out
what's their best one?
What would you talk to themabout?
What you ask them?
SPEAKER_00 (32:05):
It is a very extensive conversation that I
have with them.
And I really appreciate youbringing up the issue of
insurance companies because itreally establishes a very
difficult framework with whichwe have to work in.
Because we as providers want tofunction in that ideal world.
And then we get denials all thetime, and we always have to
(32:25):
justify why we're doing what.
But in an ideal world, if Idon't have to worry on whether
or not they have Medicare, whichis a huge inconvenience, or what
they have to consider, I ask thepatient what their biggest
concerns are.
So for example, most patientswill express the safety profile
(32:46):
is super important to me.
I don't want anything that couldincrease, you know, my
malignancy or anything likethat.
I also look at them and say,look, you know, you also have
psoriasis and you have arthritisor you have uveitis or, you
know, spondylosine ankylitis.
So I say to them, look, youknow, these therapies work,
(33:09):
these may not.
We talk about trying to use adrug that can solve all the
problems.
Another important aspect istheir lifestyle.
If you have somebody thattravels a lot, if you have
somebody that travels for work,an infusion every four weeks may
not work, every eight weeks maynot work because they don't know
where they're going to be intheir travel schedule.
(33:30):
So we may look at something likeinjectables or oral pills if
they have ulcerative colitis.
So it's really a conversationthat is very individualistic,
addressing the goals that aremost important for the patient
and trying to find the best drugat the same time that can kind
of meet not only where they arein their disease, but how to
(33:51):
best treat them in it and alsoaccommodate their lifestyle.
And also another important thingis pregnancy.
A lot of women want to know arethese drugs safe?
What drugs can I take that aresafe during pregnancy?
What are drugs that I could takethat are safe during
breastfeeding?
And so we have that conversationas well.
It's a very, veryindividualistic and
(34:13):
comprehensive conversation basedon all of those things.
My experience, safety andconvenience are the most
important because I thinkpatients kind of have the
confidence and assume that thedrugs are approved because they
work, right?
So they don't typically get intothe details of, you know, rates
of remission at three monthsversus 52 weeks, you know.
(34:36):
And I will tell them, you know,some drugs work quicker than
others.
If they're super sick, I'm gonnasay, look, this is the drug
that's gonna help you the most.
This is safe, this is not safeduring pregnancy.
So it's a very extensiveconversation and oftentimes more
than one conversation.
I'll give them a very kind of abasic idea and then we'll bring
them back in a week so that theyhave time to review the
(34:57):
medications a lot.
You know, IBD patients are very,very smart and they read and
they're very inquisitive andthey want to know.
And they know more than I do.
I have one patient who is veryinto holistic care, and he'll
be, Did you read about thisvitamin that, you know?
And so they want to know, and sothey challenge you.
So I really encourage them toread on it.
(35:18):
Then we'll bring them back andwe'll have the conversation all
over again, but now with better,more informed questions on the
patient's behalf.
So it's a great question.
And I wish I had like a one sizefits all, but that's the beauty
of IBD is that one size does notfit all.
But again, that eliminates theinsurance.
If we talk about insurance, iteliminates a lot of other things
for certain patients.
So it is something we have toinclude whether we like it or
(35:41):
not.
And the other thing I do want tobring up, since we're kind of
talking a little bit aboutmedicines, is the advent of
biosimilars.
And that is a whole other layerthat we have now because, you
know, several of our class ofdrugs have lost patents,
including uh infliximab andadolimimab, and then
Eustachinimab or Stellara hasnow biosimilars as well.
(36:02):
So patients are getting lettersthat their insurance is no
longer covering brand nameStellara and they're getting all
freaked out, but we really havebiosimilars at our disposal.
And so we try to comfort themand say, look, we've had
experience with these drugs eversince the anti-TNF family, and
we're very comfortable inswitching these drugs.
They have to be, you know,extensively studied in order to
(36:24):
get approval by the FDA.
They have to meet the samedosing, mechanism of action,
efficacy, safety, and adverseevents profile, or they wouldn't
get this certification.
So that adds another layer ofconversation because sometimes
we may order a drug and they'llthe insurance company will say,
okay, but we'll do thebiosimilar.
And so we have to, you know,provide that assurance to the
(36:46):
patient that we're comfortablewith the drugs.
And so therefore they should betoo.
SPEAKER_01 (36:50):
Do you think that the conversation is going to
change as we get closer andcloser to precision medicine?
Because I always think aboutthis, like lifestyle is always a
big part of the initialconversation.
Because if you're not going totake the meds, then they are not
going to work, right?
So, like you said, if you'retraveling for work, you can't do
(37:11):
the infusion every four weeksbecause you just don't know
where you're going to be.
But as we get closer toprecision medicine, I just think
about it like if you tell methat this is the drug based on
whatever criteria have beenestablished that has the best
chance of working, regardless ofthe other questions.
I don't know.
I feel like my lifestyle mayhave to take a back seat to take
(37:33):
in.
And let me just say this too,Jeanette.
I have a very complex case and avery rare case.
So I wasn't one of those peoplewho can say, like, I'm worried
about the safety profile.
I didn't care about that.
Like I wanted to get better andI've had multiple surgeries and,
you know, I have a J pouch withCrohn's disease.
Like I have a complex case.
So I didn't have the luxury ofbeing like, yes, I'm worried
(37:55):
about the safety profile of thisdrug.
I was like, I would like to notdie, please.
But I just think about that thatpeople that do have, and this is
gonna sound bad, but what I forme, people that do have the
luxury of being able to have theconversation and have options
like this.
I'm a little bit jealous of youall.
But also, do you think thatconversation will change as we
(38:16):
get closer and closer toprecision medicine?
SPEAKER_00 (38:18):
Oh, absolutely.
I totally do.
We're already seeing so manychanges with, you know, AI and
how it's going to affect it.
Patients have been asking for avery long time, you know,
because that's one of the bigissues in IBD right now is why
does this person have such awonderful response to an
anti-TNF and this other persondidn't?
(38:40):
You know, why did this persontolerate Antibio and this person
did not?
Or so there it's, you know,they're already doing it in
terms of, you know, cancertreatments.
And so we're kind of a littlebit behind the eight ball there.
So it is going to make a hugedifference.
I mean, to know that we couldeliminate hopefully that trial
(39:01):
and error, which is, you know,you've got to give it a try and
then we'll see if it works andplan for that scope in six
months to see if we can checkfor healing, because I don't
know if you, your phenotype isgoing to your genetics will
respond to this.
So we're very hopeful, justeliminating the trial and error,
being able to predict based onmarkers, how well you'll
(39:25):
respond, monitoring outcomes.
Even now, you know, there's appsout there in terms of so many
different things that you canmonitor.
So we can use these things interms of like communicating with
your provider in terms of likemonitoring tools.
So, yes, I'm very hopeful.
And that is gonna be superexciting when we do have that at
(39:46):
our disposal.
And it's gonna, I, you know, theway things are moving, it moves
so quickly.
It's gonna snowball.
And for me, probably it'll behard for me and my brain to keep
up because I'm getting older andlike I only have like a limited
amount of brain space left, andthen I'm gonna have to leave it
to the younger.
Oh, this is the true thing.
Like, I told my boss, like,seriously, how complicated do we
(40:06):
have to name these drugs?
Seriously, adolimumab,eustakinimab, betalismab, you
know, tofacidinib, all thesecrazy, there's not enough room.
I I don't have enough room.
So you can imagine with AI, mybrain is going to explode.
But yeah, if we can use it tonot only predict if they'll
respond, use it to predictpotential flares.
(40:26):
You know, they're also studyinguse of microbiome data.
So there's so many things thatare being studied, it's it's
gonna snowball, and you know,we're just gonna try and keep
up.
So, but yeah, I'm hopeful thatit will because we do have those
cases where by the time, so forexample, for the for the
patients that do becomemedically refractory, that they
(40:48):
do end up needing, for example,ulcerative colitis, a total
colectomy with potential Jpouch.
By the time that patients gottento the total colectomy, they've
already been in this for years,shuffling through therapies
because patients want to tryeverything before they go to
that, right?
Obviously, I understand thatnobody wants to give away their
innards, nobody wants theirinnards removed.
(41:08):
You want to do everything youcan to keep everything whole.
It makes sense, right?
And you don't want to be a youngperson having to go through an
awesome lot to deal withpsychosocially going through
that, you know, just their ownvanity, they're growing.
There's a lot of things.
So if we could eliminate so manyyears of people being sick
before ultimately they eitherneed surgery, that would be a
(41:30):
game changer for people.
So yeah, looking forward to tothat coming out as well.
I don't know if I'll bepracticing, but I might have to
quit.
But but yes, yes, it would befantastic.
SPEAKER_02 (41:43):
So when you have patients that are having surgery
and and they're going to havepieces of their, you know, their
small intestine removed and theymaybe have to have multiple
surgeries, my Crohn's diseasefriends, you know, have to have
multiple surgeries.
How are you counseling thosepeople on the potential lack of
absorption they're gettingbecause of having less small
intestines?
I mean, I think we see with ourJPouch friends like that, you
(42:06):
know, your body can kind ofchange itself and transform in
many miraculous ways.
But you're right, at some point,like if you're, you know, you're
cutting pieces away, cuttingpieces away.
As do you start to sort ofcounsel people to go to a
dietitian or do things differentor do things nutritionally to
kind of compensate for that?
Or do you do different labs tocheck?
SPEAKER_00 (42:23):
Oh, yes.
So definitely for beforesurgery, we have to have a
really in-depth conversation.
And a lot of this is also doneby the surgeons because
sometimes you just don't knowhow much bowel you're going to
have to remove.
So the most common surgery, forexample, in Crohn's is an
(42:43):
ileosecectomy.
Well, you might remove some ofthe small bowel and part of the
first part of the colon, butultimately, you know, they
always have to take out thediseased area and a certain
amount after.
Usually, one surgery, they'll dookay.
Patients will typically have alot of diarrhea initially
because of the inflammation.
(43:04):
I do have some couple, a couple,not a lot, of patients with
short gut, and it's a very, verydifficult thing to treat.
Nutrition-wise, they have somemicronutrient deficiencies.
The main thing is just thediarrhea, right?
They just have a lot ofdiarrhea.
The good news about the smallbowel is that we do have about,
(43:25):
you know, 20 feet of it, soabout six to eight meters of it.
And so let's say you have like800 centimeters of small bowel.
And then in order for you toactually qualify for short gut,
you need to have less than 200centimeters.
So you're talking about removinga huge chunk.
So it is pretty amazing.
But I do counsel them, you aregoing to have potentially some
(43:48):
diarrhea, especially as theinflammation gets better.
If it's somebody's secondsurgery, we always talk about,
even with the first, we have totalk about the risk of adhesions
because that you may have awonderful surgery and then have
scar tissue down the line thatmay lead you to susceptible to
small bowel obstructions.
Short gut is difficult, but youneed a, and again, when the
(44:10):
surgeon goes in, there may belesions, there's areas of
inflammation that they may nothave seen, but typically they
can tell, but it's ultimatelydifficult until the end of the
surgery when you have the actualspecimen.
But even some removal can leadto different symptoms in
different patients.
So I do counsel them on it, butI will say I had a patient
(44:31):
recently that had a lot of smallbowel removed through disease,
and they're doing quite well ofthe small intestine.
But yes, we definitely monitorvitamins like B12, we monitor
iron micronutrients such asmagnesium and potassium and
phosphorus if they're havingdiarrhea.
And we tell them that this maybe a risk, especially in the
initial post-op period, and wejust have to give it time to see
(44:53):
how it ends up.
But yes, it's definitely a verydifficult conversation to have.
The surgeons have it a littlebit more who are able to talk a
little bit more in detail abouthow much they suspect they may
remove.
But ultimately, patients comeback to the GI, right?
When it comes to them having thediarrhea or, you know, they're
not absorbing as well.
I have some patients that needongoing supplements with
(45:13):
magnesium infusions becausethey're losing a lot of
magnesium.
So it is very difficult.
And I have a lot of thesepatients with this short gut are
very, they depend onantidiarrheals to not make them
normal, but just to get throughthe day.
And that's really difficult tosee as well.
SPEAKER_01 (45:32):
Thank you so much for answering all of our very
detailed and clinical questions.
SPEAKER_00 (45:39):
I did have one comment.
I know that we talked about alittle bit, and I don't mean to
interrupt, but since we'recoming to the end, I do want to
bring out something that's beenkind of not so new, but maybe
patients may or may not knowabout in IBD and pregnancy.
Again, we talked a little bit.
Most most of the medicines arevery, very safe in both
pregnancy and breastfeeding.
There is a recommendation that Ithink women should know about
(46:01):
that has been uh published nowin our guidelines is that women
that become pregnant with IBDhave a slightly higher risk of
pre-eclampsia and eclampsia.
And so now there is arecommendation that women should
start low dose aspirin betweenweeks 12 and 16 and throughout
the rest of the pregnancy tokind of decrease that risk.
(46:22):
That is one of the newerrecommendations, something that
they should talk to about withtheir GYN.
And then also just another thingwith IBD and pregnancy, which I
find, you know, super importantbecause I think that women, you
know, want to have babies.
And if they don't, that'stotally fine.
But we do see a lot of voluntarychildlessness in women because
of the questions that they haveabout pregnancy and the things
(46:44):
that they don't know aboutpregnancy, and that but just
means that they may not beproperly educated.
IBD women can get pregnant ifthey choose to.
We can talk have conversationsabout fertility, even women with
J pouch if they choose to.
There's always the IVF route.
Getting pregnant with a J pouchis more of a scarring issue of
the pelvic area versus theireggs not being, you know, good.
(47:06):
So I encourage patients early onto speak to I speak to my
patients about it, but you know,speaking to their GYN because we
do refer early on to maternalfetal medicines to have that
pre-pregnancy discussion andeducation.
But anyway, I wanted to makesure that they knew about that
aspirin recommendation.
It's kind of been, you know,rather new for us.
And so I want to make sure thatthey're aware to ask about it
(47:28):
and discuss it with their GYNand OB.
Yeah, and then the other reallyimportant thing that women need
to know, and I stronglyemphasize is that the
recommendation is that womenthat are thinking about getting
pregnant need to be in clinicaland endoscopic remission about
three to six months prior toconception.
That is super important becausethat will decrease your risk of
(47:50):
complications, including lowbirth weight and preterm
delivery that may occur if youhappen to get pregnant while
you're flaring.
So, to optimize the best resultsduring pregnancy, you really
should have endoscopic andclinical remission three to six
months before conception.
SPEAKER_01 (48:06):
Thank you so much, Jeanette, for coming on the show
and sharing so freely and openlyyour experience and especially
about all the medications andpatient care.
I know that a lot of ourlisteners are gonna get a lot
out of this episode, butunfortunately, it is time for me
to ask you our last question.
And that is, what is the onething you want the IBD community
(48:26):
to know?
SPEAKER_00 (48:27):
I think that the most important thing that I want
them to know is it the IBD fieldis growing so much in terms of
therapies, possibilities,treatments.
We're really honing in ondisease states much better.
We're really treating thepatient more comprehensively,
(48:48):
including diet and kind of amore holistic approach and a
very patient-centered approachto patients.
And I really want to encourageyou to talk to your doctors and
APPs about any concerns that youhave.
I mean, one of the things thatis most important to me is that
patient-provider relationshipand that trust.
(49:08):
And you have to have that withyour provider and just know that
providers they are busy, but youare the most important thing to
us.
If you were to attend as apatient the conferences that we
attend, you would see how muchwe do care about patients and
patient care.
So please feel comfortable toask us about any topic that you
(49:29):
may have because the worst thingfor an IBD patient or any
patient is to not have theirquestions answered and to not
know.
Knowing and having thatknowledge empowers you as a
patient, and you deserve thatright.
So never be afraid to askquestions.
Don't think that you're takingup too much of our time.
It is your right to askquestions.
(49:51):
It's growing.
Now is the best time in theworld to have IBD.
I mean, it is really amazing.
And as a provider, I'm excitedto be a part of it as I see the
changes and the growth as wehave new mechanisms of action on
the horizon as well.
So quail your anxieties byspeaking to providers.
Attend these podcasts, go topatient conferences when
(50:15):
available.
There is a huge community outthere, and it really, really,
really, really is empowering.
One more thing.
Join the Crohn's and ColitisFoundation.
I have to say, that is ournational organization.
And there are so many wonderfulopportunities and things within
the Crohn's and ColitisFoundation.
And I'll do one shout out to anamazing thing for any parent
(50:36):
with children with IBD.
Crohn's Colitus offers thisamazing camp called Camp Oasis.
It is for children with IBD.
And, you know, oftentimes,especially having IBD or any
chronic disease can be very,very isolating as an adult.
Imagine for a child that justwants a normal childhood, be a
part of Crohn's and colitis.
(50:56):
There's so many ways that youcan, so many things that you can
get off their website, so muchinformation and so many
activities that would onlybenefit you as a patient as
well.
SPEAKER_02 (51:05):
That's a great shout-out.
SPEAKER_00 (51:06):
We love Camp Oasis.
SPEAKER_02 (51:07):
We're big fans of Camp Oasis.
Oh, good over here.
So yes, yeah, great shout-out.
Thank you.
Such great advice.
Absolutely love it.
So thank you.
Thank you, Jeanette, so much forcoming to spend the evening with
us and sharing all of yourwisdom and knowledge.
And thank you, everybody else,for listening to the show.
And cheers, everybody.
SPEAKER_00 (51:24):
Thank you guys.
Cheers.
I'm really excited to have beenhere.
Thank you so much.
Hi, this is Jeanette Valone.
If you enjoyed this podcast,please share it with all of your
friends.
Please subscribe and give us apositive rating.
Thank you so much.
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