November 19, 2025 • 52 mins
Welcome to episode 1 of our series- IBD Can Eat Me guest hosted by Stacey Collins, IBD RD. In this series, Stacey will interview other Dietitians who also specialize in IBD. This week we welcomed Venus Kalami- board-certified pediatric Dietitian Nutritionist!
What if the strict diet you’re told to follow does more harm than good? We sit down with pediatric dietitian Venus to unpack how nutrition in IBD can support health without sacrificing joy, culture, or family life. From Stanford Children’s IBD and celiac center to medical affairs and public education, Venus brings a rare mix of clinical depth and human warmth—and she doesn’t shy away from hard truths.
We dig into the pressure families feel to “do everything,” the overuse of restrictive therapeutic diets, and the real risks that come with them: malnutrition, ARFID, pediatric feeding disorders, and lasting food trauma. Venus shares a clear way to tell the difference between a transient food reaction and an inflammatory flare, helping patients step off the rollercoaster of fear and over-correction. She also shows how to make care culturally inclusive with simple, powerful questions: What do you like? What do you cook? What feels doable at home? It’s a move from generic handouts to plans that honor heritage foods and real life.
You’ll hear a vivid case study where a patient referred for low FODMAP improved dramatically without elimination—just lactase with dairy, spreading fruit across the day, and changing other patterns developed from past food trauma. We talk about involving mental health early, “asking around the ask” when supplements come up, and borrowing pediatric best practices for adults who shouldn’t have to navigate IBD alone. The theme running through it all: patients deserve permission to dream beyond survival. Biomarkers matter, but so do birthdays, travel, and the comfort foods that make you feel at home.
If this conversation resonates, follow the show, share it with someone who needs a gentler path, and leave a review to help more people find evidence-based, humane IBD care. Your feedback shapes future episodes—what question should we tackle next?
- Nutrition Pearls podcast with Venus
- Venus on X
- Solid Starts app
- "Offering Nutritional Therapies to Patients with IBD: Even If You're Not An Expert"- Video from Nutritional Therapy for IBD
Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_04 (00:12):
Next week we bring back our friend and friend of
the show, registered dietitianStacy Collins.
She's going to be helping ushost a new series called IBD
Community, where we bring inother dietitians who specialize
in inflammatory bowel disease.
This week we're taking it offwith registered pediatric
dietitian Venusa Kalami.
You'll hear all about her inStacy's intro.
(00:33):
So let's get it started.
SPEAKER_00 (00:39):
Hi everybody, welcome to Bowel Moments.
This is Robin.
SPEAKER_04 (00:41):
Hello, everyone.
This is Alicia, and we areabsolutely delighted to be
hosting our second ever IBD CanEat Me show.
This is a series we're going tobe doing with our BFF.
This is Stacey Collins,Dietician Extraordinaire.
So Stacey, welcome to the show.
SPEAKER_03 (00:59):
Thank you so much.
Is it okay if I introduce myfriend Venus?
Absolutely.
You take it away.
Okay, so my friend Venus Kalami.
I have asked her to kindlyprepare a bio so that I don't
just wax poetic about how she'smy favorite person and we're
besties, and I'm just so excitedabout her as a human being.
(01:19):
So Venus is a board-certifiedpediatric dietitian and
nutritionist author, an advocateat heart and in real life for
culturally, socioeconomically,and weight-inclusive nutrition.
As an experienced clinician,nutrition and science
communicator, and James BeardFoundation scholar with training
from Tufts, Stanford, and Fair,she empowers children and
(01:42):
families to live their fullestlives by building healthy
relationships with food andtheir bodies.
Much of her clinical experiencetook place at Stanford
Children's, where she helpedfound the inaugural nutrition
program for theirinternationally recognized
inflammatory battle disease andceliac disease center of
excellence.
She subspecializes in nutritionfor infants and children with
(02:04):
digestive and allergicconditions and advocates for
food-related quality of life andminimizing diet restrictions.
Her passion for food,psychology, and cultural
humility has been featured onmedia outlets such as CBS,
KPIX5, Very Well Health, SesameStreet, and others.
And she speaks often atprofessional conferences.
(02:26):
Most recently, she'stransitioned into the world of
medical affairs where she'sdoubled down on public speaking
and educates clinicians on thelatest and greatest in pediatric
nutrition.
Welcome, the news.
I'm so excited you're here.
Thank you, Stacey, for havingme.
SPEAKER_02 (02:41):
Thank you, Lisa and Robin.
But Stacy, you know, you reallymessed up in my bio because you
said you were going to mentionmy dogs and you didn't.
And I'm never gonna forgive youfor that.
SPEAKER_03 (02:50):
Did you hear Jackson in the background?
Jackson in the background waslike, hell yeah, the noose is
here.
Okay, shout out to Rostum and toBonu.
Baby Bonu Bear, it's no secret,but baby Bonu bear is my
favorite.
And I don't mean to pickfavorites, but Rostum is a
nugget and we love them both.
And shout out to the dogs.
Amen.
Shout out to the dogs.
Yeah.
SPEAKER_02 (03:10):
My reason for existing, you know, no big deal.
SPEAKER_03 (03:14):
Thank you for being here.
Thank you guys for having bothof us.
This is a real delight.
SPEAKER_00 (03:19):
We have to start with what are y'all drinking?
SPEAKER_03 (03:21):
Oh my god, so boring.
SPEAKER_02 (03:23):
But I'm drinking water.
Tears, I'm also drinking water.
Okay, amazing.
In a perfect world, I would bedrinking honestly a hot jasmine
tea because that keeps me goingand gives me joy, and I never
get sick of it.
SPEAKER_04 (03:38):
I am drinking water, but in the form of tea.
So I'm drinking a yogi immunityand stress tea.
I'm not sure if it's workingyet, but I'll let you know at
the end.
SPEAKER_03 (03:48):
Hope so.
What about you?
I see a topo chico.
SPEAKER_00 (03:52):
Sparkling water, lime with mint.
It's like I'm obsessed with itright now.
So I have regular water, asalways, multiple beverages on my
little desk here, and Topo ChicoLime with mint.
SPEAKER_01 (04:02):
As close to mojito as you can get without the
mojito baggage, which I reallylike.
SPEAKER_03 (04:08):
The mojito baggage.
SPEAKER_01 (04:09):
We're here for it all.
SPEAKER_03 (04:10):
Well, we're all well hydrated tonight.
So it should be a goodconversation.
What kind of trouble should weget into?
Venus, I'm gonna let you startit off by kind of introducing us
to how you eventually made yourway into the IBD community.
Gladly.
SPEAKER_02 (04:24):
Well, I started off at Stanford Children's as a
pediatric dietitian.
Didn't actually realize that Iwanted to go into pediatrics
until the opportunity presenteditself to me, but I knew I
always wanted to go intodigestive health nutrition, just
had a natural interest in it andreally loved the mind, body, gut
connection and how so much ofnutrition for digestive health
(04:46):
also has a lot to do with likeour mental health and our
socioeconomic status.
And then when I got into thatrole, somehow, miraculously, I
was placed in the twospecialties I really wanted to
spend the most time in, whichwas GI and maternal health.
So that was really, really nice.
I got to counsel pregnant momsand then counsel on celiac
disease and then teachgestational diabetes educations
(05:10):
and then counsel kids on tubefeedings.
And then a few years into thatrole, Stanford Children's was
really fortunate to havereceived a like it's either 60
million or 80 million dollargrant from an anonymous donor to
build this IBD and C ReactDisease Center of Excellence.
And so for that role, becauseprior to that they they didn't
(05:31):
have like a dedicated team, likeall the GI dietitians and all
the gastroenterologists wouldgenerally see IBD.
So they wanted to buildsomething really tailored and
specific.
And when they did that, theyneeded a dietitian.
And at that time, I had justfinished my master's in
nutrition science and policy.
There was a lot of focus onprogram building and research
and whatnot.
So it felt like the rightopportunity to go in, do
(05:53):
clinical work, but also do a lotof program building, get
involved with research, and alsodo like a lot of outreach, like
community outreach andeducation.
So IBD came to me.
I had family friends very closeto me who had really, really,
really bad IBD.
So I was familiar with it.
It wasn't something that was newto me, and I had that personal
connection.
(06:14):
And for me, I loved GI and lovedworking in a setting where I
could have long-termrelationships with my patients
and be able to advocate for thechild and help calm parents
down.
And IBD was a great fit forthat.
And there was a lot of food andmood stuff going on there that I
could I could get down with andsometimes run away from.
SPEAKER_03 (06:33):
Wonderful.
SPEAKER_02 (06:34):
Depends on the day.
SPEAKER_03 (06:35):
Yeah, depends on the day.
But thank you so much for takingus through that explanation.
And it sounds like just kind ofthe serendipitous conglomerate
of right place, right time,passion meets purpose sort of
thing.
And I think that's really cool,the like the pool that IBD had,
because I maintain that I've metmy favorite people in life
because of IBD, and you areincluded in that for sure.
(06:56):
So we like to kind of end theshow, or I say we, as if it's
also my show, but Robin andAlicia like to end the show by
asking patients and clinicianskind of what's one thing that
you could leave with the IBDcommunity.
And I don't think it's necessarythat we start on that note, but
on a similar note, in your timekind of spent on this journey
(07:19):
with IBD, with GI, what do youfeel like are common pain points
both for patients and forclinicians?
Because both are listeners hereof the Bow Moments podcast.
So I'm wondering from yourvantage point, Venuse, what do
you feel like are some commonpain points or even separate,
either way?
There's so many pain points.
SPEAKER_02 (07:38):
I think I think we need like a physical therapist
to walk us through all the painpoints because they're so
painful.
Just kidding.
So, but not kidding.
There's a lot going on in theworld of GI and IBD, and I think
they're both blessing and cursesin that, especially in
pediatrics, I think a lot ofclinicians are really, really
excited about nutrition and dietand lifestyle interventions to
(08:00):
help children and their familiesbe healthier, potentially
control their IBD to somedegree.
And then parents and caregiverstend to also be very nutrition
motivated and want to do, quote,everything I can, end quote, to
better help their child.
And with that comes an intenseamount of pressure to really
absolutely exhaust yourself indoing some of these restrictive
(08:23):
diets and making sure you'vedone everything you possibly can
for your child.
And when you have a child, a lotof times they don't want to go
on these restrictive diets, evenif the studies say that they
help improve cow protectinlevels by 25% or whatever it
might be.
Children need a lot morefunctional, meaningful, like
developmentally appropriatemotivators.
(08:46):
So that brings me to the painpoint of I think we all
clinicians, parents, to lesserdegree children feel like a
pressure that because a lot ofthese restrictive therapeutic
diets exist, that children mustgo on them or that they need to
be pushed on them or motivatedto get on them, and that if
we're not, we're we're missingsomething, we're missing this
great opportunity.
(09:06):
It's a tool.
There are so many others.
So I think that's one big painpoint that I know you know,
Stacy, I can go on forever aboutthis.
I think another pain point istreating food like medicine in
this regimented way of I don'tknow how to say it, other than
like treating food like it's amedical variable rather than
(09:26):
this like cultural variable, amoment where people come
together and have joy at thetable.
I've had children literally tellme that when something like
exclusive ventral nutrition wasoffered to them or a restrictive
diet was offered to them,they've said things along the
lines of, My disease has takeneverything away from me, at
least don't take my food awayfrom me.
(09:46):
Like my food is all I have, andI I couldn't agree with that
more.
Food is like it's comfort, andsome people say, Well, food
shouldn't be so emotional.
It is stop, it is.
And where I live in the BayArea, it's super multicultural.
So I have like a lot of SouthAsian children or Vietnamese
children that I've worked with,or I don't know, Korean families
(10:07):
where food is obviouslycultural, but for many of these
immigrant families, firstgeneration families, it's like
the closest connection that youhave to your country while
living abroad and feelingprobably alienated.
It means so much more to thesefamilies than many of us can
even begin to realize.
And it's meant to be just in anideal setting, it's meant to be
(10:29):
enjoyable.
We don't really need to betalking about milligrams of
this, grams of that, portions ofthis, eat this many refrigerated
potatoes per day.
Like cooked and cooled, baby,cooked and cooled.
Cooked and cooled, becauseresistant starches and
prebiotics and short chain fattyacids.
I also think like we've justreduced food down to all these
(10:51):
like nutritive components ratherthan like the the whole is
greater than the sum of itsparts.
Like I think food is very muchthat.
But then when we talk aboutnutrition, we just break it down
to all these nitty-grittyaspects.
And when we do that, we toss outlike the joy and the fun and the
emotional and culturalconnections.
So again, I can go on with thesepain points, but I'll I'll take
a pause here.
SPEAKER_03 (11:12):
I think that that's important because, well, for so
many reasons, right?
But also just it can be so hard.
It can be so hard.
So it's interesting to hear youtalk about this because our
training as dietitians isalmost, you know, we go through
the nutrition screening, we gothrough the nutrition
assessment.
It is kind of set up to makenutrition very algorithmic.
(11:34):
It is set up, especially if wethink way back to our training
where it's like, okay, 15 gramsof glucose might cause a blood
sugar spike.
How are we going to educatearound that?
And then to kind of take thisreally nuanced lens, this really
tailored sort of lens of lookingat the whole patient that's in
front of you.
And I'm hearing you say that,you know, where you're located,
(11:58):
you have very multiculturalpatients.
Can you give us some examples,both for patients and
clinicians, of what maybe tolook out for so that on either
side of the spectrum, they'rethinking about what a more
culturally inclusive, a moreindividualized, a more tailored
approach to nutrition, whatwould that actually look like in
(12:20):
practice?
SPEAKER_02 (12:21):
Yeah, I think it's a great question.
And I think that's that's thepain point for clinicians of
like, I want to practice in amore culturally inclusive way,
but I don't know how, or eventaking it a step further.
I have a lot of clinicians tellme that they feel like it's not
their place in that they don'twant to ask about culture or
they're afraid of saying thewrong thing or saying something
(12:43):
that might be a micro or macroaggression.
And so then we miss theconversation entirely, and I
think it's so much better to askimperfectly rather than not ask
at all.
Yes.
Yes, ask imperfectly.
And I I would like I wouldextend that message to to so
many factors within IBD.
I know we're not talking aboutthis quite yet, but talking
(13:04):
about like IBD and body image, alot of clinicians don't ask
about that because they're soafraid of saying the wrong
thing, and now I'm gonna causean eating disorder.
I think our our patients, ourfamilies need our compassion and
our sincerity and ourvulnerability, sometimes more
than the nitty-grittyrecommendations that we give
them.
They just need to beacknowledged as a human.
And I think sometimes in themedical world and nutritional
(13:26):
world, we really lose thehumanity and we we like decenter
the human from the wholeprocess.
So, anyway, to answer yourquestion about how folks can be
more culture inclusive, I thinkit's it's simple things like I
don't know, I can think of amillion families who've come to
me and they're like, Oh, shouldI should I be eating more kale?
Should I be eating morebroccoli?
(13:46):
And I'll ask things like, Well,what are the foods that you
typically like to eat?
Do you typically eat kale andbroccoli?
Do you like those foods?
What do you typically cook athome?
And I might have families whoare like, Oh, we really like to
cook with like fenagreek and ourstews and okra.
I'm like, those are great, thoseare fantastic.
You can cook with those, they'rejust as good as kale and
broccoli.
So I think what you're doing isbefore you answer the question,
(14:10):
you're asking, well, what is itthat you do?
And what is it that you like?
And what would actually work foryou?
And do you want to eat kale andbroccoli?
Are these things you actuallywant to do?
And usually somewhere in there,there's a response that they
give you that you're like, ah,you're doing something amazing.
Affirm that, like, let them feelgood about what it is that
they're doing.
So many of our resources in theworld of IBD tend to be very
(14:33):
westernized, so they're notsuper inclusive of wide cultural
eating patterns from MiddleEastern, North African to East
Asian to wherever in the worldyou want to stay.
And then we have a lot of likegeneric handouts that encouraged
the Mediterranean diet.
And I know this is not the firsttime that the Mediterranean diet
has been mentioned on thispodcast, but like the generic
(14:55):
go-to diet in the world of IBDis the Mediterranean diet.
Except the Mediterranean diet isreally just a generally healthy
diet that has lots of plants init and isn't super high in
saturated fat, and there'sreally nothing else that's
special about it without megetting too deep in the weeds
about my my qualms with theMediterranean diet.
And so if we can understand likewhat makes the Mediterranean
(15:18):
diet so quote unquote special,which is just that it's varied
and has a lot of fruits andvegetables and olive oil, but
you could argue that there aremany other oils that are good
for you too.
I mean, all that's to say islike, are there assumptions that
you're making?
Can you give some space to yourpatients to be who they are and
share about their culturalpractices?
And can you encourage themrather than make them feel like
(15:39):
they're not good enough?
SPEAKER_03 (15:40):
I love that so much.
And I've certainly lived, youknow, on the other side of this
as a patient too, but where youjust want the answer.
And I'm sure you've heard somany patients who are like, can
you just tell me the food thatwill limit my inflammation?
Can you just tell me the foodthat will be okay?
Or I'm gonna stick to my, youknow, same five foods over and
(16:00):
over and over and over.
And we we find that thesepatients are sort of stuck in
this, like, you know, most idealdiet scenario, where I don't
know, sometimes I wonder if it'sallowing them to actually live
into a better quality of life.
And Venice, you and I havetalked about this extensively,
where it's like, are we doingour job to make sure that
(16:21):
patients are actually living areally profound quality of life?
Or are we actually like causingthem to sacrifice even more?
And what what is that balancebetween like that rigidity
restriction?
Like, can you take me through alittle bit of like what your
brain is sort of going throughin an assessment with a patient?
Because I think another thingthat we get stuck in as
(16:43):
clinicians is we're told, youknow, which diets would be
appropriate for patients.
And then when we actually go inand start talking to the
patients, we're like, wow, thisdiet looks nothing like what
this patient looks like, right?
And so how do we help a patientreally live into their
individuality with nutrition?
Like, what does that processsort of look like in your brain
(17:03):
for you or with a conversationwith a patient for you?
SPEAKER_02 (17:06):
Yeah, I think it's a great question.
And again, I think in thisparticular setting in the world
of IBD, there's so much pressureto optimize diet from the
clinician end, from the parentcaregiver end, from the child
end, especially when we'reworking with like adolescents
and young adults as well in theworld of pediatrics.
But I would say, like, if I wereto summarize it succinctly and
(17:26):
then go into it because that'swhat I do because I can't resist
details.
The way I would put it is likethe whole point of trying to get
IBD under control, whether it'smedication, whether it's diet
and lifestyle, whatever, is toultimately help you live your
life, right?
Like these are all tools to helpyou find your joy and help you
get back to whatever it is thatgives you meaning and purpose.
(17:49):
And so if you are on a dietthat's like literally not only
narrowing the foods that youeat, but narrowing the life
experiences that you engage inor feel like you can engage in,
to me, that's a problem.
Like on balance, I don't feellike we're having a net positive
impact on IBD, but also qualityof life.
One particular patient thatcomes to mind, and I was telling
(18:12):
you about this particularpatient, Stacy, was this really
sweet family that had a younggirl who had IBD and they love
to do this like there's like asouthern ball event that their
family would travel to, andthere's like a chef there who
cooks all these foods and makesa lot of like southern barbecue,
a lot of fatty foods, plenty ofgluten and all the you know
trigger words that people hearin the world of IBD.
(18:34):
And this family was asking me,they're like, Yeah, we're we're
thinking of just not goingbecause I don't think there's
anything that she'll be able toeat, and it's it's that like I
we don't want to, you know,trigger her her IBD.
And what I asked them was, isthis something you guys enjoy?
They're like, Well, yeah.
I'm like, is it fun?
Well, yeah, and like, does shelook forward to it?
They're like, Yeah, it's one ofher favorite things.
(18:56):
I'm like, then you go, then yougo.
And I'm like, there's so many,then you, then you go, like, you
know, but like I think I thinksometimes IBD2 will put people
in this black or white place oflike, I can or I can't.
And for them, they're like, Ican't.
I'm like, well, you can go andyou can talk to the chef and
(19:18):
maybe see if there's some otheroptions that like work better
for your family, and it may notbe perfect, and we're not
chasing perfection.
SPEAKER_00 (19:26):
I think that sometimes something that needs
to be clarified with people,especially when they're newly
diagnosed, is there's adifference between having some
symptoms when you eat food andbeing in an active flair, and
then like making it worse.
Because if you're gonna go tothis event and eat some barbecue
and have the symptoms for acouple of days, that's a whole
(19:46):
lot different than like actuallybeing in an active flare.
And like the food that we eat isthe inflammation is not caused
by the food that we eat.
Like if you're in an activedisease, that's a completely
different thing.
So I feel like sometimes peoplego confused about what that
means.
So they're like, is this gonnaput me into a flare?
(20:07):
Well, it's probably gonna giveyou symptoms for a couple of
days, but is is that gonna putyou into an actual flare, which
I think of as active disease.
So could you either both of you,one of you, talk about like the
differences there and eatingfood and making you symptomatic?
SPEAKER_02 (20:22):
Yeah, one of the things I say frequently to
families is that especially whenthey're in remission and doing
fine, but they're like, oh mygod, I ate this food and I had
loose stool.
And one of the things I tellthem is like, just because you
have IVD doesn't mean you don'tget to have a stomach ache
because you're nervous about atest.
Just because you have IVDdoesn't mean that you're not
gonna have loose stool aftereating three cups of fruit just
(20:42):
like everybody else.
So all the things that bothereverybody else's stomach is also
gonna bother your stomach.
And you might be a little bitmore heightened in your response
because of the history that youhave, and you might be more
aware of it because of whatyou've gone through.
That doesn't make it any lessscary, but I want you to know
that you're not in harm, likeyou're not causing harm to
yourself.
This is not disease, and the wayyou know the difference usually,
(21:06):
and this is not so perfectlyblack and white, but the way I
would tell people, like you knowyour energy starts going if
you're in a flare.
Like you notice that normalthings start becoming really
hard versus you consume too muchlactose in a setting, and then
like you know, within four hoursyou're like generally better the
next day, you're fine.
Whereas like when you're in aflare, it's with you, you feel
(21:26):
it, it's in your bones, and itdoesn't feel good.
Whereas like a food reaction,it's a lot more transient.
SPEAKER_03 (21:32):
Yeah, I think that's a really important point to
highlight, Robin, because sooften I talk to patients and
they're like, oh, it caused meto flare.
And I'm like, oh, did we checkyour CRP after you ate, you
know, a can of beans?
It's totally normal to have GIdistress after certain foods.
That's actually normal.
And that's something that we'vecertainly lost sight of, I
(21:53):
think, with just like thisoptimization purity sort of
culture that seems to be verypervasive on social media, is
that there is a certain level ofsmoke alarms that it's important
to be like, oh, I noticed that.
How can I zoom out?
Am I still participating?
Am I isolating?
Am I experiencing nocturnalbowel movements and night
sweats?
Because those are alwaysexample, like consistently, if
(22:16):
you're experiencing, you know,zooming out again more days in a
week than not, where you'rewaking up in the middle of the
night with nocturnal urgency andnight sweats, like those are all
things worth paying attention toversus, okay, well, I mean, I
went to a wedding this weekend,for example, had a very large
slice of chip chocolate cake.
And I'll tell you what, theplane ride home could have been
(22:37):
better, could have been a lotworse as well.
Could have been a lot worse.
But there is a certain level ofjust like learning that, okay, I
live in a body that hasexperienced trauma in my
digestive system.
How can I not attach so muchinvestment into that sensation
and understand that that is justgoing to be part of the
(22:58):
digestive process versus that'sgiving my body inflammation?
It's making me sick.
I did this to myself.
That's just kicking yourselfwire down.
It's not a good time.
And the only thing that we knowthat will, like, over time with
food, like really wreak havoc onthe microbiome is
over-restriction.
Malnutrition.
(23:18):
Malnutrition.
Can you talk about how commonthat was in your pediatric
population or if you saw it atall or never?
What what are your thoughts?
SPEAKER_02 (23:28):
If I saw a lot of over-restriction, I think that's
just the knee-jerk reaction inthis world of like I ate a food,
it made me feel a way, I'mtaking it out.
That's probably the norm versusthe exception across all the
kinds of IBD, across all thekinds of life stages, unless
they really had a parent orcaregiver who was really well
grounded and like really knewtheir stuff.
(23:49):
An analogy that I really like toshare with families to help them
get them out of this likerestrictive mindset is one of
like the musculoskeletal systemand physical therapy.
So sometimes a patient will cometo me and be like, oh my god,
like I ate this kale salad and Ihad so much diarrhea the next
day.
I'm like, Well, how much kalesalad?
And they're like, it was a bigbowl.
(24:09):
I'm like, yo, everybody getsdiarrhea after a kale salad.
That's not what I actually say.
But I'm also like, but really.
And so what I tell them, I waslike, well, how often do you
like eat that?
And they're like, not often.
That was like a one-off thing.
I'm like, okay, cool.
Let's talk about this.
You are like someone, liketaking a physical therapy, like
(24:30):
body example.
I'm like, you're someone whogoes on walks, right?
You're not a marathoner.
What you did last night wastrain like a marathoner with not
the body of a marathoner.
And what I mean by that is thatyour gut, just like your body,
needs to adapt to things in yourdiet.
And when you don't normally eatthose things and you introduce
them all of a sudden and a wholebunch at once, it's gonna freak
(24:53):
out, just like your muscles andyour bones would if you all of a
sudden decided to run 26 milestomorrow.
And I feel like that resonatesbecause our digestive system, as
you know, it's inside of us.
We can't see it, we can sure ashell feel it.
But with our physical outsidemuscles and bones kind of body,
we we see it more, we feel itmore.
There's it's easier to make thatconnection.
(25:13):
So I tell people, just like ifyou go to physical therapy, it
makes sense to introduce thesethings.
I'm not saying don't have thesefoods, but you might need to do
it smaller amounts, or you mightneed to ease into it, and you
can't have maybe too much all atonce, and you need to kind of
listen to your body and increaseas you feel works for you, and
that's gonna look different fromyour cousin who has IBD or your
(25:35):
Instagram BFF who has IBD.
So for those who have thatknee-jerk reaction to restrict
because maybe they were onrestrictive diets as a part of
their IBD management, or becausethey ate a food and they had
this digestive sensation andthey they're hyper-vigilant
around those sensations.
I try to really talk about like,well, think about it in a
different way, right?
(25:55):
Like if you took everything out,that wouldn't make sense.
Just like if you had pain inyour body and you stopped moving
entirely, that also wouldn'tmake sense.
And what you're doing to yourgut is stopping moving entirely,
like you would for your body.
I may simplify it sometimes forthe younger ones, but it's it's
the parents usually who need tohear it that it doesn't make
sense to take stuff out.
But the world at large reallyloves to tell people like take
(26:17):
more out and then you'll findthe root cause and you'll cure
yourself, quote unquote, of IBD,and then like all will be
better.
And that's like the furthestthing from the truth, and it's
not even going into how muchhavoc that wreaks on the child
and the family units and mentalhealth and their ability to like
live their lives.
SPEAKER_03 (26:35):
Kind of along those lines, just thinking about this
hyper restriction that'sover-consumed, over-prescribed,
it seems like people fail tounderstand that diet is not a
benign intervention.
And so, you know, to I'll saymany of my white patients, it
feels like in some ways, I'll behonest, it feels sometimes as a
(26:56):
white person, it feels easier totalk to them about diet and
nutrition because a lot of ourfoods have been like already
colonialized.
They've already been kind ofprescribed around the
Mediterranean diet, which failedto, you know, encompass things
like places like Tunisia orMorocco.
So stay with me, stay with me.
(27:17):
So I had a patient one time whowas a First Nations indigenous
patient, and they described thetrauma of not being able to eat
their cultural foods becausethey were made to believe that
they were inflammatory foods.
I'm talking like rice and corn.
(27:38):
They were made to believe thatthese foods were inflammatory.
And they talked about how thatwas actually more traumatic to
them than their entire year ofnot being believed about a
fistula, of being deniedbiologics.
When I finally was able to tellthem, like, you can actually
have these foods, we're justgoing to have to consider
(28:01):
different textures that aregoing to be congruent with your,
you know, perianal disease.
We're just going to have toconsider different scenarios in
which this may or may not bebeneficial for your overall
symptom management.
They actually described like notbeing allowed to eat their foods
as more psychologically damagingto themselves than their actual
(28:22):
disease process.
Do you have any examples ofvenues of something where it's
like you think that a patientmight benefit from perhaps X
diet, or maybe anotherpractitioner is like, hey, can
the dietitian go see them toeducate them around why diet?
But can you kind of like take usthrough a little bit about what
goes through an actual nutritionassessment whenever patients are
(28:44):
asking about supplements andthey're the, you know, and we're
asking them questions asdietitians, like, what is an
actual nutrition assessment looklike with a dietitian for us to
be able to understand how totruly like meet a person where
they are?
Because that's something we hearall the time.
Meet a person where they are,but we're trained in algorithms.
So how do we really meet aperson where they are?
SPEAKER_02 (29:05):
I don't even know where to start, but I want to
start everywhere.
So I want to backtrack and sayto you your point that the point
that I think you were trying tomake is that restriction is not
benign.
And I think there's a hugemisconception that a lot of
these dietary therapies areperceived as more natural and
therefore lower risk in terms ofembarking on as an intervention
(29:25):
for IBD.
I don't think that could befurther from the truth because,
again, especially withimpressionable young children,
we can be sending a lot of wrongmessages, we can be invoking
significant food-related traumalike your patient.
That was not the first time I'veheard a story like that.
I've I've heard that so manytimes where patients were like,
I would rather be sick than eatin this way.
(29:47):
I really rather would.
And I was seeing so much of thisover prescription of these
dietary therapies whereclinicians, well intentioned,
didn't know how to do the job ofthe dietitian, right?
And were prescribing the diets.
It got to the point so much thatI literally was having trouble
sleeping.
It was so bad.
Like I felt like it was a messbeyond anything that I could
(30:08):
fix.
And then I went to NASP again,which is the North American
Society for PediatricGastroenterology, Hepatology,
and Nutrition.
They really need to shorten thatthough.
And I told them, I was like, Ineed to get up on a podium and I
need to talk about this becausethis can't go on the way it is
right now, where people areviewing this these diets as
medicinal and no risk.
(30:28):
That this is insane becausethere are so many risks from
disordered eating to theemotional trauma to furthering
feeding disorders like RFID orPFDs to think about the
families.
SPEAKER_03 (30:40):
Really quickly, I'm sorry to interject.
Can you just explain veryquickly what RFID and PFD stands
for, just for the listeners?
For sure.
SPEAKER_02 (30:47):
So PFD is a pediatric feeding disorder,
which can is a big umbrella ofmany different types of feeding
disorders.
And there's, you know, debate inthe pediatric world of is RFID a
PFD or not?
I'm not going to get into that.
RFID, we see a lot in the worldof GI, especially in IBD, and it
stands for avoidant restrictivefood intake disorder.
And we often see it in the worldof IBD because we're working
(31:09):
with a patient population thathas had a lot of shitty
experiences with food.
And very naturally, thispopulation becomes fearful of
food because they've had so manynegative reactions.
So you take a patient like thatand put them on a really
restrictive diet, you areliterally telling them, keep on
having more RFID, like keep keepbeing fearful, keep doing that.
So it got to the point where Igot up on a podium and I went
(31:32):
through a bunch of literature, alot of literature in the world
of mental health, GI mentalhealth, on why these therapeutic
diets, which can be helpful fora small sub-population, is
generally not as beneficial aswe think.
And then myself, a pediatric IBDpsychologist, a pediatric
gastroenterologist, and apatient advocate sat down
(31:55):
together and wrote a paper thatwe published in the Journal of
Pediatric Gastroenterology andNutrition, which is JPGN, where
we talk about like who is a goodfit patient and who is not a
good fit patient for diettherapy.
And I'm telling you, good fitpatient is a unicorn.
Right?
They need all the resources.
They need to be have arelatively chill relationship
(32:16):
with food in their body.
Their disease can't be tooextreme because we're we're
running the risk of makingmalnutrition worse.
We need to have resources thatare culturally appropriate.
We need, must have a dietitianand honestly a mental health
specialist because this is hard.
And when people are telling youthings like this diet was more
traumatic than mylife-threatening disease, you
(32:37):
bet I want a mental healthspecialist in there.
So, to your actual question,Stacey, of like what does a
nutrition assessment look like?
It looks like centering thepatient.
If you're trying to not takethis algorithmic approach, which
as human beings, I like to thinkthat none of us are these simple
plug-and-chug equations.
So if I have a new patient, likewhat I really like to know is
what's on your mind and what isit that you want to talk about?
(33:00):
What's important to you?
Tell me a little bit aboutyourself.
Like, what school do you go to?
What classes are you taking?
What's your favorite?
What are your favoriteactivities?
What brings you joy?
What I really want to know isobviously the patient, but I
also want to know what motivatesthem, like what gives them
purpose in life.
Because, especially with kids, alot of kids don't care about
health.
They don't care about cowprotectant levels.
(33:21):
I'm a big fan of speaking one'smotivational language, which is
not like Spanish to Spanish,English to English, but like if
I have a boy who loves baseball,right, we're gonna talk about
okay, eating, not skipping yourmeals, and trying to include
carrots and broccoli twice aweek is actually gonna help your
vision be sharper so that whenyou go up to bat, you are gonna
(33:42):
hit that ball, and this is yourcompetitive advantage against
the opposing team that speakstheir language.
So I want to know the thingsthat give them purpose so that
when I am then asking about,okay, well, tell me what you eat
and who cooks and who shops andwhat do you like and what do you
don't like, I'm thinking aboutokay, how can I help move the
needle forward in a way thatgives purpose and meaning to
(34:04):
them and keeps them motivated.
And it's also a nice way forparents and caregivers to see
their child like spark up aboutsomething and help them also
move away from like the tabletime struggles of like just eat
your vegetables and just onemore bite, and moving away from
that dynamic that also makeskids not love being at the
(34:24):
dinner table with their parents.
So when you are caught feelinglike, oh, I want to potentially
prescribe this therapeutic dietas a clinician, you have to ask
yourself, does it make sense?
Do they want to do this?
What is it giving?
What is it taking away?
On balance, is this helping oris this hurting?
Where is the finish line?
(34:44):
Once you get there, what doeslife after the finish line look
like?
Because, okay, sure, you getyour cow protectins down to a
really great level and you scopeand it looks really great and
there's no inflammation.
Okay, but now we're like eatingthis super restrictive diet that
no one is happy eating, thenwhat?
So I like clinicians to thinkabout that because sometimes
you're just caught in thesurvival of like patients coming
(35:06):
every 20 minutes and you justneed to stay on top of your
schedule and you're just tryingto give an answer to move on and
like just survive your day.
And I I empathize deeply.
And we also have to think aboutwhat does the finish line look
like?
Is there life beyond like thisrestriction and survival?
Like, can we have a little bitof happiness right now and not
focus so much on restriction?
SPEAKER_03 (35:25):
No, I think that's important because something you
had mentioned to me inconversations prior is giving
patients permission to dreambeyond surviving.
And like the most importantquestion a dietitian ever asked
me as a patient is how did ittaste?
And to me, that reinforced,like, oh, it's okay that me with
(35:45):
a J Pouch, like me with, youknow, a 10-year plus history,
god like 15-year history withulcerative colitis.
It still means that I deserveto, you know, enjoy those
moments when I'm able toactually like taste a meal and
enjoy the, you know, thedigestive experience that isn't
(36:06):
always available.
That's something that youactually kind of taught me,
Venus, is like giving patientspermission to dream beyond
surviving.
And then also like that balanceof sacrifice in a time-bound
way.
Like maybe, maybe for somepeople it is really feasible to
do some sort of medical diet fora short period of time as a
bridge to therapy.
(36:28):
For some people, it can offerthem a sense of comfort.
But what do you do?
For example, if you have theseguidelines that say that we
should be approaching people oneway, but then you're looking at
a patient and you're like, thisjust doesn't make sense.
Like, because I think that'swhere a lot of dietitians and
even other clinicians get hungup.
It's like, well, the guidelinessay one thing, but I know that
(36:51):
this patient needs anotherthing.
Like we have people right nowwho don't have access to full
kitchens.
We have people right now whodon't have access to groceries,
we have people right now whohave a million reasons not to
eat at all.
What do we do in thosescenarios?
SPEAKER_02 (37:06):
Yeah, I think a lot of times dietitians are put in a
position where they get areferral, and the referral is
like, teach them this dietrather than like do an
assessment and evaluate if adiet therapy would be
appropriate at all.
And I think with that comes thisimplicit pressure to maybe move
forward with prescribing dietsthat aren't appropriate for
(37:27):
patients, at least in the worldof pediatrics.
And so one of the things I thinkthat you know dietitians and
other clinicians can do is totake a step back and relieve
yourself of that pressure and dothe assessment and really be
objective and subjective,because we're we're talking
about humans here, about doesthis make sense for the patient
(37:48):
and not to be afraid to use yourvoice and respectfully just
communicate that style is not agood fit.
I had a patient who came to mewith inflammatory bowel disease
that per his labs and per hislast scope was completely
controlled, like literallypatent scope, perfect.
But this guy was still having 15to 20 bowel movements a day.
(38:10):
So they said that he has irritalbowel syndrome diarrhea type and
referred him to me for a lowFODMAPS diet education.
I did a really, really, reallydeep intake.
This took a lot of time, and soI think that can be a big
barrier to clinicians.
But a good intake, I think,really does take time to get to
know your patients and to comecome across like the few small
interventions you really need tomake versus these grand sweeping
(38:32):
generalized recommendations thatpatients tend to get all the
time that aren't individualized.
So after a lot of questions andasking and all this sort of
stuff, I realized that he'slikely severely lactose
intolerant.
I noticed that he's eating largeportions of fruit all at once
and he's consuming literalgallons of fluid a day, which is
like probably triple toquadruple of what his body like
(38:55):
actually needed if he were tosit down and do the math.
But when I approached him aboutlike, okay, I kind of think
you're probably lactoseintolerant, like, what do you
think about that?
He's like, Oh yeah, I know I'mlactose intolerant.
And I was like, Okay, tell memore.
He's like, I know I'm lactoseintolerant, but I really don't
want to restrict myself and Iwant to eat what I want to eat
because I used to have activebulimia, and so the idea of
(39:20):
restricting myself scares methat I may re-trigger myself to
that really low point in mylife, and I've made so much
progress, and I I don't want togo back to that place, and and I
I don't want to be restricted,so I was like, Well, I'm not
here to restrict you, so I'mlike, could you could you take a
lactate with your McFlurry nexttime?
He's like, Yes.
I'm like, cool, done.
unknown (39:40):
Okay.
SPEAKER_03 (39:41):
Wait, you you said McFlurry.
SPEAKER_02 (39:44):
Oh my goodness.
Because that's what it was.
He was he was getting likeflurry, so I'm like, I'm not
gonna take this away from you,and also like, yeah, okay, sugar
and dairy and whatever, but I'mlike, hmm, I don't know,
life-threatening eating disorderwhere you can have like fatal
electrolyte shifts and like youknow what I mean?
I'm like, eat the McFlurria.
I will not be the one to sendyou back to that place, and I
(40:07):
hope you never go back to thatplace.
And then the next thing is thathe had a lot of like residual
behaviors left over from when hewas a lot had more active
bulimia, so he would eat likelarge portions of food at once,
including really fiber-richfoods like fruit, which are it
was it's great.
It's great for IPD, antioxidantsand fiber and all the things.
So I told him, again, I'm nothere to restrict you, I just
(40:27):
need you to spread that fruitout throughout the day.
So if you're gonna have likethree cups of fruit, could you
do like one cup in the morning,one in the middle of the day,
one in the evening, just see howit feels.
Just an experiment, right?
If you don't like it, we don'thave to do this forever.
It's we're just feeling it out.
He was down with that.
And then I was like, okay, butthe water, the water we have to
cut down.
This is crazy.
Like, and and the water wasbecause a a lot of folks who
(40:50):
have bulimia will drink a lot ofwater after a meal to make it
easier to vomit.
And that was like anotherresidual behavior.
So I said, I think this is wherethis comes comes from.
He agreed, and we agreed to justcut down his water in half, see
how that felt before we cut itdown any further.
After a couple of visits, whenhe came back, his stooling went
from 15 to 20 urgent bowelmovements a day to three to four
(41:13):
non-urgent, formed, comfortablebowel movements.
And we did not do any such lowFODMAP diets.
I didn't take anything out ofhis diet except if you count
water, a little bit of water.
Took some water up, okay.
And I so I I use that case oftenbecause it took a lot of
questioning to get to thatpoint, and the knee-jerk
(41:33):
reaction from a lot of GIclinicians would have been a low
FODMAP's diet, and that's whathe was referred to me for.
And I was like, this isobjectively wrong, the wrong
thing to do.
I had no doubt in my heart,mind, body, and soul that like
we're not doing this.
And so then after we had thesuccess story, I emailed his
gastroenterologist, who happenedto be the head director of my
(41:54):
program, is a very reputableperson, and I was like, So
here's the story.
And then we had this reallygreat discussion in clinic, and
I told him my like unadulteratedthoughts about a low FODMAPS
diet that in most cases it'sactually really harmful, and in
a way, it's kind of a lazyintervention to give anyone who
has some sort of GI sensation alow FODMAPS diet, is also
insane.
(42:14):
So who knows what your questionwas, Stacy?
I went on my tangent, but here Iam.
SPEAKER_03 (42:18):
No, it's great, and it's simply it's simply not
appropriate for people with ahistory of eating disorder.
So there's that, but well done,well done.
SPEAKER_00 (42:25):
As somebody who has lived with this disease for more
than half my life now and beingdiagnosed as an adult is I find
sometimes too, is thatespecially the last time I was
in active disease for a longtime, for several years, my body
is it's like a habit.
It's used to go into thebathroom three, four, five times
a night.
And so my body's like, well, wehave to go to the bathroom even
if we don't.
(42:46):
So sometimes it's even that whenI have pain and discomfort in
certain areas, I'm in remission.
So it's like, okay, all right,fine.
Let's have a little conversationhere.
Is this actually pain anddiscomfort, or is there
something happening and you'relike, oh, it must be pain
because that's what I'm used to?
Especially for adult patientswho've lived with lived with it
for a long time.
I feel like that is just we'reso used to like feeling every
(43:08):
feeling, feeling every morsel offood go through our body,
feeling all of these things, andour body is so used to t trying
to take care of us the best thatit can.
SPEAKER_02 (43:16):
Yeah, I totally agree.
Our bodies are imperfect, andthat's what makes them so good.
You know, they they areimperfect, and sometimes our
body needs to take care of themind.
The mind needs to take care ofthe body with IBD, without IBD.
Like we are flawed human beings,and we just sometimes need
someone to bounce ourexperiences off of to be
validated and to like know thatlike this is normal and this is
(43:38):
okay, and that you don't need acrazy restrictive diet to make
it better.
SPEAKER_03 (43:41):
I think that sometimes I come across as a
little too like I'm just like soaggressive on like IBD patients
deserve to experience like agood digestive experience.
And I'll just say, like, heardone of the GI doctors in our
clinic recently explain to anewly diagnosed patient, like,
IBD sucks enough.
(44:02):
Like, we shouldn't also makeyour diet suck.
But it was just such arefreshing like reframe from in
2012 when I was diagnosed, thedoctor was like, diet doesn't
matter.
And to me, that meant like mypleasure doesn't matter, my
curiosity doesn't matter, myfear doesn't matter because the
way that I was afraid of, theway that food hurt in digestion,
my God, like water hurt todigest.
(44:24):
And the way to just wasp thataway as if, like, oh, it doesn't
matter.
I mean all of this to say, like,to me, in that moment, just
hearing that doctor say that tothat patient, like IBD sucks
enough.
We don't need food to also suckfor you.
You need your diet to be asvaried, as possible, in as safe
of a way as possible.
Like here, talk to Stacey.
I just hope that people arehearing the nuance of like the
(44:47):
work that we do is like holdingspace, understanding a person.
Where are you?
Where do you come from?
Tell me everything you've everwanted to know about food.
And also something that Ilearned from you, Venus, is like
asking around a person'scuriosity.
So, for example, if they want acertain supplement, actually,
can you really quickly like gointo that spiel?
Because you you are very muchmore eloquent about that.
(45:10):
I just really think that'simportant really quickly.
SPEAKER_02 (45:12):
I'm something that I'm a big fan of is teaching
other clinicians to ask aroundthe ask, which means that if a
patient's coming to you andthey're like, oh, what do you
think about this proteinsupplement?
Or, or like, what do you thinkabout green juicing and celery
juice and whatever?
A great way to just acknowledgethat they're motivated is to be
like, oh, that's reallyinteresting.
I'm happy to answer thatquestion for you, but tell me a
(45:33):
little bit more about whatmotivated you to pursue this.
Like, what is it that you wantto know about it?
What drew you to this?
And I think that helps us asclinicians be able to give more
thoughtful and individualizedresponses versus being like,
yeah, the protein's fine.
Ah, creatine, I don't know, askyour dietitian.
Green juice, if you like it,drink it.
More of what it does is like itjust gives us more insight into
where they're coming from,what's important to them.
(45:55):
And it also gives us anopportunity to redirect to maybe
something that's gonna be morebeneficial to what it is they
need.
So if let's say it's greenjuice, and I'm like, it sounds
like you're super motivated totake control of your health, do
something good for your body,nourish your body.
And I love that you're askingabout this.
I'm wondering if we could talkmore about like incorporating
vegetables in a way that feelsgood for your gut because that's
(46:17):
gonna give you actually evenmore benefits than the celery
juice that you're asking meabout.
We could do the celery juicetoo.
That's fine.
But I'm just thinking about likewhat you're motivated about and
like what it is that you'retrying to achieve.
And I want to help you getthere.
So I think asking around the askgives us just a glimpse into the
worldview that our patients haveand what's important to them.
SPEAKER_03 (46:36):
I love that so much.
Robin, what do you think that wecould take from Venusa's
pediatric lens and bring intoadulthood or adult GI?
SPEAKER_00 (46:46):
I think lots of things from the pediatric lens
need to be brought into adult GIjust because they're so focused
on the care of the whole patientmore so in the pediatric world
than they are in the adultworld.
Not every big clinic hasresources like dietitians and
and mental health support.
So I just love that wholetreating the whole patient and
(47:08):
uh taking care of them, whichthey do very well in the
pediatric space.
If I can be Robin for a moment,welcome.
SPEAKER_04 (47:15):
I also feel like perhaps in the pediatric
setting, they're much moredefaulted to including the
family in discussions andtalking about what's important
to the family.
And I think that's not somethinglike once you get to be an
adult, they're like, it's justyou and you gotta manage
yourself.
It's it feels like we sort oflose that community around us.
And so I do feel like that'ssomething that pediatric
(47:37):
clinicians and dietitians inparticular are talking about
like what's important to yourfamily, how do you celebrate
things?
Like, you know, how can we helpyou kind of keep the flavor of
your family as we're trying tohelp you navigate these waters?
SPEAKER_00 (47:47):
So Felicia, that is so good because even as an
adult, you are not on your own.
Like I have a caregiver.
When I was in the hospital, whenI had surgery, when I'm in a
flare, my husband's there, mydaughters are there.
Like it's not just me takingcare of myself.
Like that's such a good point.
SPEAKER_03 (48:04):
I think that wraparound like comprehensive
meeting people where they are.
I think everything I know fromnutrition is because you know, a
pediatric dietitian is like you,the news has taken time on a
podcast.
SPEAKER_02 (48:16):
I think that's what makes pediatrics special.
And I think I hadn't again I hadno intention of going into
pediatrics, but once I saw likethe respect for the family unit
and like the emphasis on ittakes a village, truly, I stayed
because I hated how isolated theadult world felt.
And it's very, very hard.
And I commend those who work inthe adult space, but I need some
warm and fuzzies at the end ofmy clinic day, and I felt like I
(48:39):
could get that in pediatrics,and it was still hard.
And you're still seeing childrengo through the worst days of
their life and entrusting youwith something that I've felt
very privileged to have beenentrusted with.
Still not easy, but at leastlike you visibly see the
community and you can includethem.
Whereas I think adult care isjust a lot more individualistic
and it may lend itself to makingIBD feel like that much more of
(49:02):
an isolated experience.
I feel like that's amisrepresentation because it
really does take a village totake care of someone, love on
someone well, feed them well,and you know, no one is taken
care of alone, whether you'renot the adult or a child.
It's just that in pediatrics weacknowledge that in adult world
we we pretend we're all toughcookies.
Deep down we're just softmarshmallows, you know.
SPEAKER_03 (49:22):
Yeah, we're just tall kids.
You said that, right?
We're just tall kids.
SPEAKER_02 (49:26):
Yeah, adults are big kids, but kids are not small
adults, is what I say.
SPEAKER_00 (49:30):
That's right.
Um, I feel like this is gonna bea fun series, Alicia.
That IBD Can Eat Me series withStacey.
Thank you both so much for beingon the show.
I'm gonna give each one of youan opportunity to answer this
question.
What is the one thing that youwant the IBD community to know?
SPEAKER_02 (49:47):
You are allowed to dream above and beyond just
surviving your condition.
You are allowed to dream beyondideal cal protectin levels and
perfect scopes.
Like you can dream about thattrip you want to take and the
college that you want to go toand the profession that you want
to pursue.
Don't limit yourself, don't letyour condition limit yourself.
Your journey to whatever it isthat you want to do is gonna
(50:09):
look different because of IBD,but you can still have the
journey.
It's not gonna look the same,but don't not have the journey
at all.
And gosh darn it, like please,please think about it, please
dream.
Wonderful.
SPEAKER_03 (50:21):
Yeah.
I also think that it'simportant, I'll just piggyback
off of that, to advocate for notonly for yourself, but when you
do advocate for yourself, knowthat you're also advocating for
others.
So if you do happen to have adietitian, it's okay to tell
them, like, hey, this handout isnot my life.
This is this is not gonna workfor me.
Challenge your clinicians to bereally strong accomplices on
(50:46):
your behalf so that you canhave, you know, recruit the
resources to dream beyond yourfecal cow protective levels.
SPEAKER_00 (50:54):
Sometimes it can be scary to advocate for yourself,
but you have to do it scared forthe reason that Stacey said,
like advocating for yourselfhelps other patients, even if
you love your doctor, even ifyou especially if you love your
doctor.
But when you love your doctor,it can feel scarier because
like, or if you've been livingwith the disease for a long time
(51:17):
and you're like, I don't want totalk about this anymore, like
you have to do it.
Sometimes it's hard, even ifyou're like me and you're
outspoken, and most people wouldthink like it's she's not scared
of talking to her doctor, she'snot scared of advocating for
herself and others, she's notscared of that.
I 100% am when I'm in the momentwith my doctor because sometimes
I don't want to be the labpatient.
(51:38):
I don't want to be the squeakywheel, I don't want to be the
one who's the problem, or Idon't want to be that person,
but it does help all thepatients coming behind you.
SPEAKER_04 (51:46):
Stacey, Venice, it was so lovely to get a chance to
eavesdrop on your conversation.
So thank you guys so much forcoming and joining us and doing
the second inner IVD Can Eat Meseries.
So we're excited to have Staceyback to have even more wisdom
dropped upon everybody.
So thank you guys so much.
Thank you, everyone else, forlistening.
And cheers.
(52:09):
If you like this episode, pleaserate, review, subscribe, and
even better, share it with yourfriends.
Cheers.
Next week we bring back our friend and friend of
the show, registered dietitianStacy Collins.
She's going to be helping ushost a new series called IBD
Community, where we bring inother dietitians who specialize
in inflammatory bowel disease.
This week we're taking it offwith registered pediatric
dietitian Venusa Kalami.
You'll hear all about her inStacy's intro.
(00:33):
So let's get it started.
SPEAKER_00 (00:39):
Hi everybody, welcome to Bowel Moments.
This is Robin.
SPEAKER_04 (00:41):
Hello, everyone.
This is Alicia, and we areabsolutely delighted to be
hosting our second ever IBD CanEat Me show.
This is a series we're going tobe doing with our BFF.
This is Stacey Collins,Dietician Extraordinaire.
So Stacey, welcome to the show.
SPEAKER_03 (00:59):
Thank you so much.
Is it okay if I introduce myfriend Venus?
Absolutely.
You take it away.
Okay, so my friend Venus Kalami.
I have asked her to kindlyprepare a bio so that I don't
just wax poetic about how she'smy favorite person and we're
besties, and I'm just so excitedabout her as a human being.
(01:19):
So Venus is a board-certifiedpediatric dietitian and
nutritionist author, an advocateat heart and in real life for
culturally, socioeconomically,and weight-inclusive nutrition.
As an experienced clinician,nutrition and science
communicator, and James BeardFoundation scholar with training
from Tufts, Stanford, and Fair,she empowers children and
(01:42):
families to live their fullestlives by building healthy
relationships with food andtheir bodies.
Much of her clinical experiencetook place at Stanford
Children's, where she helpedfound the inaugural nutrition
program for theirinternationally recognized
inflammatory battle disease andceliac disease center of
excellence.
She subspecializes in nutritionfor infants and children with
(02:04):
digestive and allergicconditions and advocates for
food-related quality of life andminimizing diet restrictions.
Her passion for food,psychology, and cultural
humility has been featured onmedia outlets such as CBS,
KPIX5, Very Well Health, SesameStreet, and others.
And she speaks often atprofessional conferences.
(02:26):
Most recently, she'stransitioned into the world of
medical affairs where she'sdoubled down on public speaking
and educates clinicians on thelatest and greatest in pediatric
nutrition.
Welcome, the news.
I'm so excited you're here.
Thank you, Stacey, for havingme.
SPEAKER_02 (02:41):
Thank you, Lisa and Robin.
But Stacy, you know, you reallymessed up in my bio because you
said you were going to mentionmy dogs and you didn't.
And I'm never gonna forgive youfor that.
SPEAKER_03 (02:50):
Did you hear Jackson in the background?
Jackson in the background waslike, hell yeah, the noose is
here.
Okay, shout out to Rostum and toBonu.
Baby Bonu Bear, it's no secret,but baby Bonu bear is my
favorite.
And I don't mean to pickfavorites, but Rostum is a
nugget and we love them both.
And shout out to the dogs.
Amen.
Shout out to the dogs.
Yeah.
SPEAKER_02 (03:10):
My reason for existing, you know, no big deal.
SPEAKER_03 (03:14):
Thank you for being here.
Thank you guys for having bothof us.
This is a real delight.
SPEAKER_00 (03:19):
We have to start with what are y'all drinking?
SPEAKER_03 (03:21):
Oh my god, so boring.
SPEAKER_02 (03:23):
But I'm drinking water.
Tears, I'm also drinking water.
Okay, amazing.
In a perfect world, I would bedrinking honestly a hot jasmine
tea because that keeps me goingand gives me joy, and I never
get sick of it.
SPEAKER_04 (03:38):
I am drinking water, but in the form of tea.
So I'm drinking a yogi immunityand stress tea.
I'm not sure if it's workingyet, but I'll let you know at
the end.
SPEAKER_03 (03:48):
Hope so.
What about you?
I see a topo chico.
SPEAKER_00 (03:52):
Sparkling water, lime with mint.
It's like I'm obsessed with itright now.
So I have regular water, asalways, multiple beverages on my
little desk here, and Topo ChicoLime with mint.
SPEAKER_01 (04:02):
As close to mojito as you can get without the
mojito baggage, which I reallylike.
SPEAKER_03 (04:08):
The mojito baggage.
SPEAKER_01 (04:09):
We're here for it all.
SPEAKER_03 (04:10):
Well, we're all well hydrated tonight.
So it should be a goodconversation.
What kind of trouble should weget into?
Venus, I'm gonna let you startit off by kind of introducing us
to how you eventually made yourway into the IBD community.
Gladly.
SPEAKER_02 (04:24):
Well, I started off at Stanford Children's as a
pediatric dietitian.
Didn't actually realize that Iwanted to go into pediatrics
until the opportunity presenteditself to me, but I knew I
always wanted to go intodigestive health nutrition, just
had a natural interest in it andreally loved the mind, body, gut
connection and how so much ofnutrition for digestive health
(04:46):
also has a lot to do with likeour mental health and our
socioeconomic status.
And then when I got into thatrole, somehow, miraculously, I
was placed in the twospecialties I really wanted to
spend the most time in, whichwas GI and maternal health.
So that was really, really nice.
I got to counsel pregnant momsand then counsel on celiac
disease and then teachgestational diabetes educations
(05:10):
and then counsel kids on tubefeedings.
And then a few years into thatrole, Stanford Children's was
really fortunate to havereceived a like it's either 60
million or 80 million dollargrant from an anonymous donor to
build this IBD and C ReactDisease Center of Excellence.
And so for that role, becauseprior to that they they didn't
(05:31):
have like a dedicated team, likeall the GI dietitians and all
the gastroenterologists wouldgenerally see IBD.
So they wanted to buildsomething really tailored and
specific.
And when they did that, theyneeded a dietitian.
And at that time, I had justfinished my master's in
nutrition science and policy.
There was a lot of focus onprogram building and research
and whatnot.
So it felt like the rightopportunity to go in, do
(05:53):
clinical work, but also do a lotof program building, get
involved with research, and alsodo like a lot of outreach, like
community outreach andeducation.
So IBD came to me.
I had family friends very closeto me who had really, really,
really bad IBD.
So I was familiar with it.
It wasn't something that was newto me, and I had that personal
connection.
(06:14):
And for me, I loved GI and lovedworking in a setting where I
could have long-termrelationships with my patients
and be able to advocate for thechild and help calm parents
down.
And IBD was a great fit forthat.
And there was a lot of food andmood stuff going on there that I
could I could get down with andsometimes run away from.
SPEAKER_03 (06:33):
Wonderful.
SPEAKER_02 (06:34):
Depends on the day.
SPEAKER_03 (06:35):
Yeah, depends on the day.
But thank you so much for takingus through that explanation.
And it sounds like just kind ofthe serendipitous conglomerate
of right place, right time,passion meets purpose sort of
thing.
And I think that's really cool,the like the pool that IBD had,
because I maintain that I've metmy favorite people in life
because of IBD, and you areincluded in that for sure.
(06:56):
So we like to kind of end theshow, or I say we, as if it's
also my show, but Robin andAlicia like to end the show by
asking patients and clinicianskind of what's one thing that
you could leave with the IBDcommunity.
And I don't think it's necessarythat we start on that note, but
on a similar note, in your timekind of spent on this journey
(07:19):
with IBD, with GI, what do youfeel like are common pain points
both for patients and forclinicians?
Because both are listeners hereof the Bow Moments podcast.
So I'm wondering from yourvantage point, Venuse, what do
you feel like are some commonpain points or even separate,
either way?
There's so many pain points.
SPEAKER_02 (07:38):
I think I think we need like a physical therapist
to walk us through all the painpoints because they're so
painful.
Just kidding.
So, but not kidding.
There's a lot going on in theworld of GI and IBD, and I think
they're both blessing and cursesin that, especially in
pediatrics, I think a lot ofclinicians are really, really
excited about nutrition and dietand lifestyle interventions to
(08:00):
help children and their familiesbe healthier, potentially
control their IBD to somedegree.
And then parents and caregiverstend to also be very nutrition
motivated and want to do, quote,everything I can, end quote, to
better help their child.
And with that comes an intenseamount of pressure to really
absolutely exhaust yourself indoing some of these restrictive
(08:23):
diets and making sure you'vedone everything you possibly can
for your child.
And when you have a child, a lotof times they don't want to go
on these restrictive diets, evenif the studies say that they
help improve cow protectinlevels by 25% or whatever it
might be.
Children need a lot morefunctional, meaningful, like
developmentally appropriatemotivators.
(08:46):
So that brings me to the painpoint of I think we all
clinicians, parents, to lesserdegree children feel like a
pressure that because a lot ofthese restrictive therapeutic
diets exist, that children mustgo on them or that they need to
be pushed on them or motivatedto get on them, and that if
we're not, we're we're missingsomething, we're missing this
great opportunity.
(09:06):
It's a tool.
There are so many others.
So I think that's one big painpoint that I know you know,
Stacy, I can go on forever aboutthis.
I think another pain point istreating food like medicine in
this regimented way of I don'tknow how to say it, other than
like treating food like it's amedical variable rather than
(09:26):
this like cultural variable, amoment where people come
together and have joy at thetable.
I've had children literally tellme that when something like
exclusive ventral nutrition wasoffered to them or a restrictive
diet was offered to them,they've said things along the
lines of, My disease has takeneverything away from me, at
least don't take my food awayfrom me.
(09:46):
Like my food is all I have, andI I couldn't agree with that
more.
Food is like it's comfort, andsome people say, Well, food
shouldn't be so emotional.
It is stop, it is.
And where I live in the BayArea, it's super multicultural.
So I have like a lot of SouthAsian children or Vietnamese
children that I've worked with,or I don't know, Korean families
(10:07):
where food is obviouslycultural, but for many of these
immigrant families, firstgeneration families, it's like
the closest connection that youhave to your country while
living abroad and feelingprobably alienated.
It means so much more to thesefamilies than many of us can
even begin to realize.
And it's meant to be just in anideal setting, it's meant to be
(10:29):
enjoyable.
We don't really need to betalking about milligrams of
this, grams of that, portions ofthis, eat this many refrigerated
potatoes per day.
Like cooked and cooled, baby,cooked and cooled.
Cooked and cooled, becauseresistant starches and
prebiotics and short chain fattyacids.
I also think like we've justreduced food down to all these
(10:51):
like nutritive components ratherthan like the the whole is
greater than the sum of itsparts.
Like I think food is very muchthat.
But then when we talk aboutnutrition, we just break it down
to all these nitty-grittyaspects.
And when we do that, we toss outlike the joy and the fun and the
emotional and culturalconnections.
So again, I can go on with thesepain points, but I'll I'll take
a pause here.
SPEAKER_03 (11:12):
I think that that's important because, well, for so
many reasons, right?
But also just it can be so hard.
It can be so hard.
So it's interesting to hear youtalk about this because our
training as dietitians isalmost, you know, we go through
the nutrition screening, we gothrough the nutrition
assessment.
It is kind of set up to makenutrition very algorithmic.
(11:34):
It is set up, especially if wethink way back to our training
where it's like, okay, 15 gramsof glucose might cause a blood
sugar spike.
How are we going to educatearound that?
And then to kind of take thisreally nuanced lens, this really
tailored sort of lens of lookingat the whole patient that's in
front of you.
And I'm hearing you say that,you know, where you're located,
(11:58):
you have very multiculturalpatients.
Can you give us some examples,both for patients and
clinicians, of what maybe tolook out for so that on either
side of the spectrum, they'rethinking about what a more
culturally inclusive, a moreindividualized, a more tailored
approach to nutrition, whatwould that actually look like in
(12:20):
practice?
SPEAKER_02 (12:21):
Yeah, I think it's a great question.
And I think that's that's thepain point for clinicians of
like, I want to practice in amore culturally inclusive way,
but I don't know how, or eventaking it a step further.
I have a lot of clinicians tellme that they feel like it's not
their place in that they don'twant to ask about culture or
they're afraid of saying thewrong thing or saying something
(12:43):
that might be a micro or macroaggression.
And so then we miss theconversation entirely, and I
think it's so much better to askimperfectly rather than not ask
at all.
Yes.
Yes, ask imperfectly.
And I I would like I wouldextend that message to to so
many factors within IBD.
I know we're not talking aboutthis quite yet, but talking
(13:04):
about like IBD and body image, alot of clinicians don't ask
about that because they're soafraid of saying the wrong
thing, and now I'm gonna causean eating disorder.
I think our our patients, ourfamilies need our compassion and
our sincerity and ourvulnerability, sometimes more
than the nitty-grittyrecommendations that we give
them.
They just need to beacknowledged as a human.
And I think sometimes in themedical world and nutritional
(13:26):
world, we really lose thehumanity and we we like decenter
the human from the wholeprocess.
So, anyway, to answer yourquestion about how folks can be
more culture inclusive, I thinkit's it's simple things like I
don't know, I can think of amillion families who've come to
me and they're like, Oh, shouldI should I be eating more kale?
Should I be eating morebroccoli?
(13:46):
And I'll ask things like, Well,what are the foods that you
typically like to eat?
Do you typically eat kale andbroccoli?
Do you like those foods?
What do you typically cook athome?
And I might have families whoare like, Oh, we really like to
cook with like fenagreek and ourstews and okra.
I'm like, those are great, thoseare fantastic.
You can cook with those, they'rejust as good as kale and
broccoli.
So I think what you're doing isbefore you answer the question,
(14:10):
you're asking, well, what is itthat you do?
And what is it that you like?
And what would actually work foryou?
And do you want to eat kale andbroccoli?
Are these things you actuallywant to do?
And usually somewhere in there,there's a response that they
give you that you're like, ah,you're doing something amazing.
Affirm that, like, let them feelgood about what it is that
they're doing.
So many of our resources in theworld of IBD tend to be very
(14:33):
westernized, so they're notsuper inclusive of wide cultural
eating patterns from MiddleEastern, North African to East
Asian to wherever in the worldyou want to stay.
And then we have a lot of likegeneric handouts that encouraged
the Mediterranean diet.
And I know this is not the firsttime that the Mediterranean diet
has been mentioned on thispodcast, but like the generic
(14:55):
go-to diet in the world of IBDis the Mediterranean diet.
Except the Mediterranean diet isreally just a generally healthy
diet that has lots of plants init and isn't super high in
saturated fat, and there'sreally nothing else that's
special about it without megetting too deep in the weeds
about my my qualms with theMediterranean diet.
And so if we can understand likewhat makes the Mediterranean
(15:18):
diet so quote unquote special,which is just that it's varied
and has a lot of fruits andvegetables and olive oil, but
you could argue that there aremany other oils that are good
for you too.
I mean, all that's to say islike, are there assumptions that
you're making?
Can you give some space to yourpatients to be who they are and
share about their culturalpractices?
And can you encourage themrather than make them feel like
(15:39):
they're not good enough?
SPEAKER_03 (15:40):
I love that so much.
And I've certainly lived, youknow, on the other side of this
as a patient too, but where youjust want the answer.
And I'm sure you've heard somany patients who are like, can
you just tell me the food thatwill limit my inflammation?
Can you just tell me the foodthat will be okay?
Or I'm gonna stick to my, youknow, same five foods over and
(16:00):
over and over and over.
And we we find that thesepatients are sort of stuck in
this, like, you know, most idealdiet scenario, where I don't
know, sometimes I wonder if it'sallowing them to actually live
into a better quality of life.
And Venice, you and I havetalked about this extensively,
where it's like, are we doingour job to make sure that
(16:21):
patients are actually living areally profound quality of life?
Or are we actually like causingthem to sacrifice even more?
And what what is that balancebetween like that rigidity
restriction?
Like, can you take me through alittle bit of like what your
brain is sort of going throughin an assessment with a patient?
Because I think another thingthat we get stuck in as
(16:43):
clinicians is we're told, youknow, which diets would be
appropriate for patients.
And then when we actually go inand start talking to the
patients, we're like, wow, thisdiet looks nothing like what
this patient looks like, right?
And so how do we help a patientreally live into their
individuality with nutrition?
Like, what does that processsort of look like in your brain
(17:03):
for you or with a conversationwith a patient for you?
SPEAKER_02 (17:06):
Yeah, I think it's a great question.
And again, I think in thisparticular setting in the world
of IBD, there's so much pressureto optimize diet from the
clinician end, from the parentcaregiver end, from the child
end, especially when we'reworking with like adolescents
and young adults as well in theworld of pediatrics.
But I would say, like, if I wereto summarize it succinctly and
(17:26):
then go into it because that'swhat I do because I can't resist
details.
The way I would put it is likethe whole point of trying to get
IBD under control, whether it'smedication, whether it's diet
and lifestyle, whatever, is toultimately help you live your
life, right?
Like these are all tools to helpyou find your joy and help you
get back to whatever it is thatgives you meaning and purpose.
(17:49):
And so if you are on a dietthat's like literally not only
narrowing the foods that youeat, but narrowing the life
experiences that you engage inor feel like you can engage in,
to me, that's a problem.
Like on balance, I don't feellike we're having a net positive
impact on IBD, but also qualityof life.
One particular patient thatcomes to mind, and I was telling
(18:12):
you about this particularpatient, Stacy, was this really
sweet family that had a younggirl who had IBD and they love
to do this like there's like asouthern ball event that their
family would travel to, andthere's like a chef there who
cooks all these foods and makesa lot of like southern barbecue,
a lot of fatty foods, plenty ofgluten and all the you know
trigger words that people hearin the world of IBD.
(18:34):
And this family was asking me,they're like, Yeah, we're we're
thinking of just not goingbecause I don't think there's
anything that she'll be able toeat, and it's it's that like I
we don't want to, you know,trigger her her IBD.
And what I asked them was, isthis something you guys enjoy?
They're like, Well, yeah.
I'm like, is it fun?
Well, yeah, and like, does shelook forward to it?
They're like, Yeah, it's one ofher favorite things.
(18:56):
I'm like, then you go, then yougo.
And I'm like, there's so many,then you, then you go, like, you
know, but like I think I thinksometimes IBD2 will put people
in this black or white place oflike, I can or I can't.
And for them, they're like, Ican't.
I'm like, well, you can go andyou can talk to the chef and
(19:18):
maybe see if there's some otheroptions that like work better
for your family, and it may notbe perfect, and we're not
chasing perfection.
SPEAKER_00 (19:26):
I think that sometimes something that needs
to be clarified with people,especially when they're newly
diagnosed, is there's adifference between having some
symptoms when you eat food andbeing in an active flair, and
then like making it worse.
Because if you're gonna go tothis event and eat some barbecue
and have the symptoms for acouple of days, that's a whole
(19:46):
lot different than like actuallybeing in an active flare.
And like the food that we eat isthe inflammation is not caused
by the food that we eat.
Like if you're in an activedisease, that's a completely
different thing.
So I feel like sometimes peoplego confused about what that
means.
So they're like, is this gonnaput me into a flare?
(20:07):
Well, it's probably gonna giveyou symptoms for a couple of
days, but is is that gonna putyou into an actual flare, which
I think of as active disease.
So could you either both of you,one of you, talk about like the
differences there and eatingfood and making you symptomatic?
SPEAKER_02 (20:22):
Yeah, one of the things I say frequently to
families is that especially whenthey're in remission and doing
fine, but they're like, oh mygod, I ate this food and I had
loose stool.
And one of the things I tellthem is like, just because you
have IVD doesn't mean you don'tget to have a stomach ache
because you're nervous about atest.
Just because you have IVDdoesn't mean that you're not
gonna have loose stool aftereating three cups of fruit just
(20:42):
like everybody else.
So all the things that bothereverybody else's stomach is also
gonna bother your stomach.
And you might be a little bitmore heightened in your response
because of the history that youhave, and you might be more
aware of it because of whatyou've gone through.
That doesn't make it any lessscary, but I want you to know
that you're not in harm, likeyou're not causing harm to
yourself.
This is not disease, and the wayyou know the difference usually,
(21:06):
and this is not so perfectlyblack and white, but the way I
would tell people, like you knowyour energy starts going if
you're in a flare.
Like you notice that normalthings start becoming really
hard versus you consume too muchlactose in a setting, and then
like you know, within four hoursyou're like generally better the
next day, you're fine.
Whereas like when you're in aflare, it's with you, you feel
(21:26):
it, it's in your bones, and itdoesn't feel good.
Whereas like a food reaction,it's a lot more transient.
SPEAKER_03 (21:32):
Yeah, I think that's a really important point to
highlight, Robin, because sooften I talk to patients and
they're like, oh, it caused meto flare.
And I'm like, oh, did we checkyour CRP after you ate, you
know, a can of beans?
It's totally normal to have GIdistress after certain foods.
That's actually normal.
And that's something that we'vecertainly lost sight of, I
(21:53):
think, with just like thisoptimization purity sort of
culture that seems to be verypervasive on social media, is
that there is a certain level ofsmoke alarms that it's important
to be like, oh, I noticed that.
How can I zoom out?
Am I still participating?
Am I isolating?
Am I experiencing nocturnalbowel movements and night
sweats?
Because those are alwaysexample, like consistently, if
(22:16):
you're experiencing, you know,zooming out again more days in a
week than not, where you'rewaking up in the middle of the
night with nocturnal urgency andnight sweats, like those are all
things worth paying attention toversus, okay, well, I mean, I
went to a wedding this weekend,for example, had a very large
slice of chip chocolate cake.
And I'll tell you what, theplane ride home could have been
(22:37):
better, could have been a lotworse as well.
Could have been a lot worse.
But there is a certain level ofjust like learning that, okay, I
live in a body that hasexperienced trauma in my
digestive system.
How can I not attach so muchinvestment into that sensation
and understand that that is justgoing to be part of the
(22:58):
digestive process versus that'sgiving my body inflammation?
It's making me sick.
I did this to myself.
That's just kicking yourselfwire down.
It's not a good time.
And the only thing that we knowthat will, like, over time with
food, like really wreak havoc onthe microbiome is
over-restriction.
Malnutrition.
(23:18):
Malnutrition.
Can you talk about how commonthat was in your pediatric
population or if you saw it atall or never?
What what are your thoughts?
SPEAKER_02 (23:28):
If I saw a lot of over-restriction, I think that's
just the knee-jerk reaction inthis world of like I ate a food,
it made me feel a way, I'mtaking it out.
That's probably the norm versusthe exception across all the
kinds of IBD, across all thekinds of life stages, unless
they really had a parent orcaregiver who was really well
grounded and like really knewtheir stuff.
(23:49):
An analogy that I really like toshare with families to help them
get them out of this likerestrictive mindset is one of
like the musculoskeletal systemand physical therapy.
So sometimes a patient will cometo me and be like, oh my god,
like I ate this kale salad and Ihad so much diarrhea the next
day.
I'm like, Well, how much kalesalad?
And they're like, it was a bigbowl.
(24:09):
I'm like, yo, everybody getsdiarrhea after a kale salad.
That's not what I actually say.
But I'm also like, but really.
And so what I tell them, I waslike, well, how often do you
like eat that?
And they're like, not often.
That was like a one-off thing.
I'm like, okay, cool.
Let's talk about this.
You are like someone, liketaking a physical therapy, like
(24:30):
body example.
I'm like, you're someone whogoes on walks, right?
You're not a marathoner.
What you did last night wastrain like a marathoner with not
the body of a marathoner.
And what I mean by that is thatyour gut, just like your body,
needs to adapt to things in yourdiet.
And when you don't normally eatthose things and you introduce
them all of a sudden and a wholebunch at once, it's gonna freak
(24:53):
out, just like your muscles andyour bones would if you all of a
sudden decided to run 26 milestomorrow.
And I feel like that resonatesbecause our digestive system, as
you know, it's inside of us.
We can't see it, we can sure ashell feel it.
But with our physical outsidemuscles and bones kind of body,
we we see it more, we feel itmore.
There's it's easier to make thatconnection.
(25:13):
So I tell people, just like ifyou go to physical therapy, it
makes sense to introduce thesethings.
I'm not saying don't have thesefoods, but you might need to do
it smaller amounts, or you mightneed to ease into it, and you
can't have maybe too much all atonce, and you need to kind of
listen to your body and increaseas you feel works for you, and
that's gonna look different fromyour cousin who has IBD or your
(25:35):
Instagram BFF who has IBD.
So for those who have thatknee-jerk reaction to restrict
because maybe they were onrestrictive diets as a part of
their IBD management, or becausethey ate a food and they had
this digestive sensation andthey they're hyper-vigilant
around those sensations.
I try to really talk about like,well, think about it in a
different way, right?
(25:55):
Like if you took everything out,that wouldn't make sense.
Just like if you had pain inyour body and you stopped moving
entirely, that also wouldn'tmake sense.
And what you're doing to yourgut is stopping moving entirely,
like you would for your body.
I may simplify it sometimes forthe younger ones, but it's it's
the parents usually who need tohear it that it doesn't make
sense to take stuff out.
But the world at large reallyloves to tell people like take
(26:17):
more out and then you'll findthe root cause and you'll cure
yourself, quote unquote, of IBD,and then like all will be
better.
And that's like the furthestthing from the truth, and it's
not even going into how muchhavoc that wreaks on the child
and the family units and mentalhealth and their ability to like
live their lives.
SPEAKER_03 (26:35):
Kind of along those lines, just thinking about this
hyper restriction that'sover-consumed, over-prescribed,
it seems like people fail tounderstand that diet is not a
benign intervention.
And so, you know, to I'll saymany of my white patients, it
feels like in some ways, I'll behonest, it feels sometimes as a
(26:56):
white person, it feels easier totalk to them about diet and
nutrition because a lot of ourfoods have been like already
colonialized.
They've already been kind ofprescribed around the
Mediterranean diet, which failedto, you know, encompass things
like places like Tunisia orMorocco.
So stay with me, stay with me.
(27:17):
So I had a patient one time whowas a First Nations indigenous
patient, and they described thetrauma of not being able to eat
their cultural foods becausethey were made to believe that
they were inflammatory foods.
I'm talking like rice and corn.
(27:38):
They were made to believe thatthese foods were inflammatory.
And they talked about how thatwas actually more traumatic to
them than their entire year ofnot being believed about a
fistula, of being deniedbiologics.
When I finally was able to tellthem, like, you can actually
have these foods, we're justgoing to have to consider
(28:01):
different textures that aregoing to be congruent with your,
you know, perianal disease.
We're just going to have toconsider different scenarios in
which this may or may not bebeneficial for your overall
symptom management.
They actually described like notbeing allowed to eat their foods
as more psychologically damagingto themselves than their actual
(28:22):
disease process.
Do you have any examples ofvenues of something where it's
like you think that a patientmight benefit from perhaps X
diet, or maybe anotherpractitioner is like, hey, can
the dietitian go see them toeducate them around why diet?
But can you kind of like take usthrough a little bit about what
goes through an actual nutritionassessment whenever patients are
(28:44):
asking about supplements andthey're the, you know, and we're
asking them questions asdietitians, like, what is an
actual nutrition assessment looklike with a dietitian for us to
be able to understand how totruly like meet a person where
they are?
Because that's something we hearall the time.
Meet a person where they are,but we're trained in algorithms.
So how do we really meet aperson where they are?
SPEAKER_02 (29:05):
I don't even know where to start, but I want to
start everywhere.
So I want to backtrack and sayto you your point that the point
that I think you were trying tomake is that restriction is not
benign.
And I think there's a hugemisconception that a lot of
these dietary therapies areperceived as more natural and
therefore lower risk in terms ofembarking on as an intervention
(29:25):
for IBD.
I don't think that could befurther from the truth because,
again, especially withimpressionable young children,
we can be sending a lot of wrongmessages, we can be invoking
significant food-related traumalike your patient.
That was not the first time I'veheard a story like that.
I've I've heard that so manytimes where patients were like,
I would rather be sick than eatin this way.
(29:47):
I really rather would.
And I was seeing so much of thisover prescription of these
dietary therapies whereclinicians, well intentioned,
didn't know how to do the job ofthe dietitian, right?
And were prescribing the diets.
It got to the point so much thatI literally was having trouble
sleeping.
It was so bad.
Like I felt like it was a messbeyond anything that I could
(30:08):
fix.
And then I went to NASP again,which is the North American
Society for PediatricGastroenterology, Hepatology,
and Nutrition.
They really need to shorten thatthough.
And I told them, I was like, Ineed to get up on a podium and I
need to talk about this becausethis can't go on the way it is
right now, where people areviewing this these diets as
medicinal and no risk.
(30:28):
That this is insane becausethere are so many risks from
disordered eating to theemotional trauma to furthering
feeding disorders like RFID orPFDs to think about the
families.
SPEAKER_03 (30:40):
Really quickly, I'm sorry to interject.
Can you just explain veryquickly what RFID and PFD stands
for, just for the listeners?
For sure.
SPEAKER_02 (30:47):
So PFD is a pediatric feeding disorder,
which can is a big umbrella ofmany different types of feeding
disorders.
And there's, you know, debate inthe pediatric world of is RFID a
PFD or not?
I'm not going to get into that.
RFID, we see a lot in the worldof GI, especially in IBD, and it
stands for avoidant restrictivefood intake disorder.
And we often see it in the worldof IBD because we're working
(31:09):
with a patient population thathas had a lot of shitty
experiences with food.
And very naturally, thispopulation becomes fearful of
food because they've had so manynegative reactions.
So you take a patient like thatand put them on a really
restrictive diet, you areliterally telling them, keep on
having more RFID, like keep keepbeing fearful, keep doing that.
So it got to the point where Igot up on a podium and I went
(31:32):
through a bunch of literature, alot of literature in the world
of mental health, GI mentalhealth, on why these therapeutic
diets, which can be helpful fora small sub-population, is
generally not as beneficial aswe think.
And then myself, a pediatric IBDpsychologist, a pediatric
gastroenterologist, and apatient advocate sat down
(31:55):
together and wrote a paper thatwe published in the Journal of
Pediatric Gastroenterology andNutrition, which is JPGN, where
we talk about like who is a goodfit patient and who is not a
good fit patient for diettherapy.
And I'm telling you, good fitpatient is a unicorn.
Right?
They need all the resources.
They need to be have arelatively chill relationship
(32:16):
with food in their body.
Their disease can't be tooextreme because we're we're
running the risk of makingmalnutrition worse.
We need to have resources thatare culturally appropriate.
We need, must have a dietitianand honestly a mental health
specialist because this is hard.
And when people are telling youthings like this diet was more
traumatic than mylife-threatening disease, you
(32:37):
bet I want a mental healthspecialist in there.
So, to your actual question,Stacey, of like what does a
nutrition assessment look like?
It looks like centering thepatient.
If you're trying to not takethis algorithmic approach, which
as human beings, I like to thinkthat none of us are these simple
plug-and-chug equations.
So if I have a new patient, likewhat I really like to know is
what's on your mind and what isit that you want to talk about?
(33:00):
What's important to you?
Tell me a little bit aboutyourself.
Like, what school do you go to?
What classes are you taking?
What's your favorite?
What are your favoriteactivities?
What brings you joy?
What I really want to know isobviously the patient, but I
also want to know what motivatesthem, like what gives them
purpose in life.
Because, especially with kids, alot of kids don't care about
health.
They don't care about cowprotectant levels.
(33:21):
I'm a big fan of speaking one'smotivational language, which is
not like Spanish to Spanish,English to English, but like if
I have a boy who loves baseball,right, we're gonna talk about
okay, eating, not skipping yourmeals, and trying to include
carrots and broccoli twice aweek is actually gonna help your
vision be sharper so that whenyou go up to bat, you are gonna
(33:42):
hit that ball, and this is yourcompetitive advantage against
the opposing team that speakstheir language.
So I want to know the thingsthat give them purpose so that
when I am then asking about,okay, well, tell me what you eat
and who cooks and who shops andwhat do you like and what do you
don't like, I'm thinking aboutokay, how can I help move the
needle forward in a way thatgives purpose and meaning to
(34:04):
them and keeps them motivated.
And it's also a nice way forparents and caregivers to see
their child like spark up aboutsomething and help them also
move away from like the tabletime struggles of like just eat
your vegetables and just onemore bite, and moving away from
that dynamic that also makeskids not love being at the
(34:24):
dinner table with their parents.
So when you are caught feelinglike, oh, I want to potentially
prescribe this therapeutic dietas a clinician, you have to ask
yourself, does it make sense?
Do they want to do this?
What is it giving?
What is it taking away?
On balance, is this helping oris this hurting?
Where is the finish line?
(34:44):
Once you get there, what doeslife after the finish line look
like?
Because, okay, sure, you getyour cow protectins down to a
really great level and you scopeand it looks really great and
there's no inflammation.
Okay, but now we're like eatingthis super restrictive diet that
no one is happy eating, thenwhat?
So I like clinicians to thinkabout that because sometimes
you're just caught in thesurvival of like patients coming
(35:06):
every 20 minutes and you justneed to stay on top of your
schedule and you're just tryingto give an answer to move on and
like just survive your day.
And I I empathize deeply.
And we also have to think aboutwhat does the finish line look
like?
Is there life beyond like thisrestriction and survival?
Like, can we have a little bitof happiness right now and not
focus so much on restriction?
SPEAKER_03 (35:25):
No, I think that's important because something you
had mentioned to me inconversations prior is giving
patients permission to dreambeyond surviving.
And like the most importantquestion a dietitian ever asked
me as a patient is how did ittaste?
And to me, that reinforced,like, oh, it's okay that me with
(35:45):
a J Pouch, like me with, youknow, a 10-year plus history,
god like 15-year history withulcerative colitis.
It still means that I deserveto, you know, enjoy those
moments when I'm able toactually like taste a meal and
enjoy the, you know, thedigestive experience that isn't
(36:06):
always available.
That's something that youactually kind of taught me,
Venus, is like giving patientspermission to dream beyond
surviving.
And then also like that balanceof sacrifice in a time-bound
way.
Like maybe, maybe for somepeople it is really feasible to
do some sort of medical diet fora short period of time as a
bridge to therapy.
(36:28):
For some people, it can offerthem a sense of comfort.
But what do you do?
For example, if you have theseguidelines that say that we
should be approaching people oneway, but then you're looking at
a patient and you're like, thisjust doesn't make sense.
Like, because I think that'swhere a lot of dietitians and
even other clinicians get hungup.
It's like, well, the guidelinessay one thing, but I know that
(36:51):
this patient needs anotherthing.
Like we have people right nowwho don't have access to full
kitchens.
We have people right now whodon't have access to groceries,
we have people right now whohave a million reasons not to
eat at all.
What do we do in thosescenarios?
SPEAKER_02 (37:06):
Yeah, I think a lot of times dietitians are put in a
position where they get areferral, and the referral is
like, teach them this dietrather than like do an
assessment and evaluate if adiet therapy would be
appropriate at all.
And I think with that comes thisimplicit pressure to maybe move
forward with prescribing dietsthat aren't appropriate for
(37:27):
patients, at least in the worldof pediatrics.
And so one of the things I thinkthat you know dietitians and
other clinicians can do is totake a step back and relieve
yourself of that pressure and dothe assessment and really be
objective and subjective,because we're we're talking
about humans here, about doesthis make sense for the patient
(37:48):
and not to be afraid to use yourvoice and respectfully just
communicate that style is not agood fit.
I had a patient who came to mewith inflammatory bowel disease
that per his labs and per hislast scope was completely
controlled, like literallypatent scope, perfect.
But this guy was still having 15to 20 bowel movements a day.
(38:10):
So they said that he has irritalbowel syndrome diarrhea type and
referred him to me for a lowFODMAPS diet education.
I did a really, really, reallydeep intake.
This took a lot of time, and soI think that can be a big
barrier to clinicians.
But a good intake, I think,really does take time to get to
know your patients and to comecome across like the few small
interventions you really need tomake versus these grand sweeping
(38:32):
generalized recommendations thatpatients tend to get all the
time that aren't individualized.
So after a lot of questions andasking and all this sort of
stuff, I realized that he'slikely severely lactose
intolerant.
I noticed that he's eating largeportions of fruit all at once
and he's consuming literalgallons of fluid a day, which is
like probably triple toquadruple of what his body like
(38:55):
actually needed if he were tosit down and do the math.
But when I approached him aboutlike, okay, I kind of think
you're probably lactoseintolerant, like, what do you
think about that?
He's like, Oh yeah, I know I'mlactose intolerant.
And I was like, Okay, tell memore.
He's like, I know I'm lactoseintolerant, but I really don't
want to restrict myself and Iwant to eat what I want to eat
because I used to have activebulimia, and so the idea of
(39:20):
restricting myself scares methat I may re-trigger myself to
that really low point in mylife, and I've made so much
progress, and I I don't want togo back to that place, and and I
I don't want to be restricted,so I was like, Well, I'm not
here to restrict you, so I'mlike, could you could you take a
lactate with your McFlurry nexttime?
He's like, Yes.
I'm like, cool, done.
unknown (39:40):
Okay.
SPEAKER_03 (39:41):
Wait, you you said McFlurry.
SPEAKER_02 (39:44):
Oh my goodness.
Because that's what it was.
He was he was getting likeflurry, so I'm like, I'm not
gonna take this away from you,and also like, yeah, okay, sugar
and dairy and whatever, but I'mlike, hmm, I don't know,
life-threatening eating disorderwhere you can have like fatal
electrolyte shifts and like youknow what I mean?
I'm like, eat the McFlurria.
I will not be the one to sendyou back to that place, and I
(40:07):
hope you never go back to thatplace.
And then the next thing is thathe had a lot of like residual
behaviors left over from when hewas a lot had more active
bulimia, so he would eat likelarge portions of food at once,
including really fiber-richfoods like fruit, which are it
was it's great.
It's great for IPD, antioxidantsand fiber and all the things.
So I told him, again, I'm nothere to restrict you, I just
(40:27):
need you to spread that fruitout throughout the day.
So if you're gonna have likethree cups of fruit, could you
do like one cup in the morning,one in the middle of the day,
one in the evening, just see howit feels.
Just an experiment, right?
If you don't like it, we don'thave to do this forever.
It's we're just feeling it out.
He was down with that.
And then I was like, okay, butthe water, the water we have to
cut down.
This is crazy.
Like, and and the water wasbecause a a lot of folks who
(40:50):
have bulimia will drink a lot ofwater after a meal to make it
easier to vomit.
And that was like anotherresidual behavior.
So I said, I think this is wherethis comes comes from.
He agreed, and we agreed to justcut down his water in half, see
how that felt before we cut itdown any further.
After a couple of visits, whenhe came back, his stooling went
from 15 to 20 urgent bowelmovements a day to three to four
(41:13):
non-urgent, formed, comfortablebowel movements.
And we did not do any such lowFODMAP diets.
I didn't take anything out ofhis diet except if you count
water, a little bit of water.
Took some water up, okay.
And I so I I use that case oftenbecause it took a lot of
questioning to get to thatpoint, and the knee-jerk
(41:33):
reaction from a lot of GIclinicians would have been a low
FODMAP's diet, and that's whathe was referred to me for.
And I was like, this isobjectively wrong, the wrong
thing to do.
I had no doubt in my heart,mind, body, and soul that like
we're not doing this.
And so then after we had thesuccess story, I emailed his
gastroenterologist, who happenedto be the head director of my
(41:54):
program, is a very reputableperson, and I was like, So
here's the story.
And then we had this reallygreat discussion in clinic, and
I told him my like unadulteratedthoughts about a low FODMAPS
diet that in most cases it'sactually really harmful, and in
a way, it's kind of a lazyintervention to give anyone who
has some sort of GI sensation alow FODMAPS diet, is also
insane.
(42:14):
So who knows what your questionwas, Stacy?
I went on my tangent, but here Iam.
SPEAKER_03 (42:18):
No, it's great, and it's simply it's simply not
appropriate for people with ahistory of eating disorder.
So there's that, but well done,well done.
SPEAKER_00 (42:25):
As somebody who has lived with this disease for more
than half my life now and beingdiagnosed as an adult is I find
sometimes too, is thatespecially the last time I was
in active disease for a longtime, for several years, my body
is it's like a habit.
It's used to go into thebathroom three, four, five times
a night.
And so my body's like, well, wehave to go to the bathroom even
if we don't.
(42:46):
So sometimes it's even that whenI have pain and discomfort in
certain areas, I'm in remission.
So it's like, okay, all right,fine.
Let's have a little conversationhere.
Is this actually pain anddiscomfort, or is there
something happening and you'relike, oh, it must be pain
because that's what I'm used to?
Especially for adult patientswho've lived with lived with it
for a long time.
I feel like that is just we'reso used to like feeling every
(43:08):
feeling, feeling every morsel offood go through our body,
feeling all of these things, andour body is so used to t trying
to take care of us the best thatit can.
SPEAKER_02 (43:16):
Yeah, I totally agree.
Our bodies are imperfect, andthat's what makes them so good.
You know, they they areimperfect, and sometimes our
body needs to take care of themind.
The mind needs to take care ofthe body with IBD, without IBD.
Like we are flawed human beings,and we just sometimes need
someone to bounce ourexperiences off of to be
validated and to like know thatlike this is normal and this is
(43:38):
okay, and that you don't need acrazy restrictive diet to make
it better.
SPEAKER_03 (43:41):
I think that sometimes I come across as a
little too like I'm just like soaggressive on like IBD patients
deserve to experience like agood digestive experience.
And I'll just say, like, heardone of the GI doctors in our
clinic recently explain to anewly diagnosed patient, like,
IBD sucks enough.
(44:02):
Like, we shouldn't also makeyour diet suck.
But it was just such arefreshing like reframe from in
2012 when I was diagnosed, thedoctor was like, diet doesn't
matter.
And to me, that meant like mypleasure doesn't matter, my
curiosity doesn't matter, myfear doesn't matter because the
way that I was afraid of, theway that food hurt in digestion,
my God, like water hurt todigest.
(44:24):
And the way to just wasp thataway as if, like, oh, it doesn't
matter.
I mean all of this to say, like,to me, in that moment, just
hearing that doctor say that tothat patient, like IBD sucks
enough.
We don't need food to also suckfor you.
You need your diet to be asvaried, as possible, in as safe
of a way as possible.
Like here, talk to Stacey.
I just hope that people arehearing the nuance of like the
(44:47):
work that we do is like holdingspace, understanding a person.
Where are you?
Where do you come from?
Tell me everything you've everwanted to know about food.
And also something that Ilearned from you, Venus, is like
asking around a person'scuriosity.
So, for example, if they want acertain supplement, actually,
can you really quickly like gointo that spiel?
Because you you are very muchmore eloquent about that.
(45:10):
I just really think that'simportant really quickly.
SPEAKER_02 (45:12):
I'm something that I'm a big fan of is teaching
other clinicians to ask aroundthe ask, which means that if a
patient's coming to you andthey're like, oh, what do you
think about this proteinsupplement?
Or, or like, what do you thinkabout green juicing and celery
juice and whatever?
A great way to just acknowledgethat they're motivated is to be
like, oh, that's reallyinteresting.
I'm happy to answer thatquestion for you, but tell me a
(45:33):
little bit more about whatmotivated you to pursue this.
Like, what is it that you wantto know about it?
What drew you to this?
And I think that helps us asclinicians be able to give more
thoughtful and individualizedresponses versus being like,
yeah, the protein's fine.
Ah, creatine, I don't know, askyour dietitian.
Green juice, if you like it,drink it.
More of what it does is like itjust gives us more insight into
where they're coming from,what's important to them.
(45:55):
And it also gives us anopportunity to redirect to maybe
something that's gonna be morebeneficial to what it is they
need.
So if let's say it's greenjuice, and I'm like, it sounds
like you're super motivated totake control of your health, do
something good for your body,nourish your body.
And I love that you're askingabout this.
I'm wondering if we could talkmore about like incorporating
vegetables in a way that feelsgood for your gut because that's
(46:17):
gonna give you actually evenmore benefits than the celery
juice that you're asking meabout.
We could do the celery juicetoo.
That's fine.
But I'm just thinking about likewhat you're motivated about and
like what it is that you'retrying to achieve.
And I want to help you getthere.
So I think asking around the askgives us just a glimpse into the
worldview that our patients haveand what's important to them.
SPEAKER_03 (46:36):
I love that so much.
Robin, what do you think that wecould take from Venusa's
pediatric lens and bring intoadulthood or adult GI?
SPEAKER_00 (46:46):
I think lots of things from the pediatric lens
need to be brought into adult GIjust because they're so focused
on the care of the whole patientmore so in the pediatric world
than they are in the adultworld.
Not every big clinic hasresources like dietitians and
and mental health support.
So I just love that wholetreating the whole patient and
(47:08):
uh taking care of them, whichthey do very well in the
pediatric space.
If I can be Robin for a moment,welcome.
SPEAKER_04 (47:15):
I also feel like perhaps in the pediatric
setting, they're much moredefaulted to including the
family in discussions andtalking about what's important
to the family.
And I think that's not somethinglike once you get to be an
adult, they're like, it's justyou and you gotta manage
yourself.
It's it feels like we sort oflose that community around us.
And so I do feel like that'ssomething that pediatric
(47:37):
clinicians and dietitians inparticular are talking about
like what's important to yourfamily, how do you celebrate
things?
Like, you know, how can we helpyou kind of keep the flavor of
your family as we're trying tohelp you navigate these waters?
SPEAKER_00 (47:47):
So Felicia, that is so good because even as an
adult, you are not on your own.
Like I have a caregiver.
When I was in the hospital, whenI had surgery, when I'm in a
flare, my husband's there, mydaughters are there.
Like it's not just me takingcare of myself.
Like that's such a good point.
SPEAKER_03 (48:04):
I think that wraparound like comprehensive
meeting people where they are.
I think everything I know fromnutrition is because you know, a
pediatric dietitian is like you,the news has taken time on a
podcast.
SPEAKER_02 (48:16):
I think that's what makes pediatrics special.
And I think I hadn't again I hadno intention of going into
pediatrics, but once I saw likethe respect for the family unit
and like the emphasis on ittakes a village, truly, I stayed
because I hated how isolated theadult world felt.
And it's very, very hard.
And I commend those who work inthe adult space, but I need some
warm and fuzzies at the end ofmy clinic day, and I felt like I
(48:39):
could get that in pediatrics,and it was still hard.
And you're still seeing childrengo through the worst days of
their life and entrusting youwith something that I've felt
very privileged to have beenentrusted with.
Still not easy, but at leastlike you visibly see the
community and you can includethem.
Whereas I think adult care isjust a lot more individualistic
and it may lend itself to makingIBD feel like that much more of
(49:02):
an isolated experience.
I feel like that's amisrepresentation because it
really does take a village totake care of someone, love on
someone well, feed them well,and you know, no one is taken
care of alone, whether you'renot the adult or a child.
It's just that in pediatrics weacknowledge that in adult world
we we pretend we're all toughcookies.
Deep down we're just softmarshmallows, you know.
SPEAKER_03 (49:22):
Yeah, we're just tall kids.
You said that, right?
We're just tall kids.
SPEAKER_02 (49:26):
Yeah, adults are big kids, but kids are not small
adults, is what I say.
SPEAKER_00 (49:30):
That's right.
Um, I feel like this is gonna bea fun series, Alicia.
That IBD Can Eat Me series withStacey.
Thank you both so much for beingon the show.
I'm gonna give each one of youan opportunity to answer this
question.
What is the one thing that youwant the IBD community to know?
SPEAKER_02 (49:47):
You are allowed to dream above and beyond just
surviving your condition.
You are allowed to dream beyondideal cal protectin levels and
perfect scopes.
Like you can dream about thattrip you want to take and the
college that you want to go toand the profession that you want
to pursue.
Don't limit yourself, don't letyour condition limit yourself.
Your journey to whatever it isthat you want to do is gonna
(50:09):
look different because of IBD,but you can still have the
journey.
It's not gonna look the same,but don't not have the journey
at all.
And gosh darn it, like please,please think about it, please
dream.
Wonderful.
SPEAKER_03 (50:21):
Yeah.
I also think that it'simportant, I'll just piggyback
off of that, to advocate for notonly for yourself, but when you
do advocate for yourself, knowthat you're also advocating for
others.
So if you do happen to have adietitian, it's okay to tell
them, like, hey, this handout isnot my life.
This is this is not gonna workfor me.
Challenge your clinicians to bereally strong accomplices on
(50:46):
your behalf so that you canhave, you know, recruit the
resources to dream beyond yourfecal cow protective levels.
SPEAKER_00 (50:54):
Sometimes it can be scary to advocate for yourself,
but you have to do it scared forthe reason that Stacey said,
like advocating for yourselfhelps other patients, even if
you love your doctor, even ifyou especially if you love your
doctor.
But when you love your doctor,it can feel scarier because
like, or if you've been livingwith the disease for a long time
(51:17):
and you're like, I don't want totalk about this anymore, like
you have to do it.
Sometimes it's hard, even ifyou're like me and you're
outspoken, and most people wouldthink like it's she's not scared
of talking to her doctor, she'snot scared of advocating for
herself and others, she's notscared of that.
I 100% am when I'm in the momentwith my doctor because sometimes
I don't want to be the labpatient.
(51:38):
I don't want to be the squeakywheel, I don't want to be the
one who's the problem, or Idon't want to be that person,
but it does help all thepatients coming behind you.
SPEAKER_04 (51:46):
Stacey, Venice, it was so lovely to get a chance to
eavesdrop on your conversation.
So thank you guys so much forcoming and joining us and doing
the second inner IVD Can Eat Meseries.
So we're excited to have Staceyback to have even more wisdom
dropped upon everybody.
So thank you guys so much.
Thank you, everyone else, forlistening.
And cheers.
(52:09):
If you like this episode, pleaserate, review, subscribe, and
even better, share it with yourfriends.
Cheers.
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Las Culturistas with Matt Rogers and Bowen Yang
Ding dong! Join your culture consultants, Matt Rogers and Bowen Yang, on an unforgettable journey into the beating heart of CULTURE. Alongside sizzling special guests, they GET INTO the hottest pop-culture moments of the day and the formative cultural experiences that turned them into Culturistas. Produced by the Big Money Players Network and iHeartRadio.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.