Reclaiming Joy in Eating with IBD Featuring Stacey Collins, MA, RDN/LDN

People with Crohn's disease or ulcerative colitis (forms of inflammatory bowel disease, or IBD) were told for many decades that diet didn't affect the disease. Even today, some patients are still told this, even though there is now significant evidence that diet absolutely matters in IBD. Stacey Collins, MA, RDN/LDN describes how her journey with ulcerative colitis led to j-pouch surgery. Her philosophy as a registered dietician is one of “nutrition by addition" rather than by dietary restriction. Stacey also focuses on the emotional aspects of eating with IBD, including the understandable fear and anxiety around food.

 

Topics discussed:

• The role of diet in managing inflammatory bowel disease (IBD).
• Personal experiences with ulcerative colitis and dietary management.
• The misconception that diet does not impact IBD management.
• The philosophy of "nutrition by addition" versus dietary restrictions.
• The importance of individualized dietary approaches for IBD patients.
• The impact of food on gut health and bacterial diversity.
• Emotional aspects of eating with IBD, including fear and anxiety around food.
• The significance of finding joy in cooking and eating.
• Practical dietary recommendations for IBD patients, including the Mediterranean diet.
• The importance of community support and connection in managing IBD.

Find Stacey Collins, MA, RDN/LDN at:

• Stacey Collins Nutrition: https://www.staceycollinsnutrition.com/
• Twitter: @staceynellc_rd
• Instagram: @staceynellc_rd
• LinkedIn: @stacey-cutler-collins

 

Publications from Stacey Collins, MA, RDN/LDN:

• Scarlata K, Zickgraf HF, Satherley RM, et al. A Call to Action: Unraveling the Nuance of Adapted Eating Behaviors in Individuals with GI Conditions. Clin Gastroenterol Hepatol. Published online December 14, 2024. doi:10.1016/j.cgh.2024.11.010
• Collins S, DIGID Inflammatory Bowel Diseases Workgroup. Iron in GI conditions. Patient.Gastro.org. 2024. https://patient.gastro.org/iron-in-gi-conditions/
• Collins S, Castelan VC, Wernick R, et al. Effects of nutrition status and perioperative nutrition supplement completion on postope

Episode Transcript

(00:05):
I'm Amber Tresca and this isabout IBD, the podcast that
knows that diet does matter.I'm a medical writer and patient
educator who lives with a Jpouch due to ulcerative colitis.
It's my mission to educate peopleliving with Crohn's disease or
ulcerative colitis about theirdisease, and to bring awareness
to the patient journey.Welcome to episode 173 years ago.

(00:26):
Vowel rest, which means noteating any food, might be
recommended for managing IBD.When not in a flare up,
you might have been recommendeda low fiber diet.
Today, we know that these things arenot always appropriate for everyone.
Even today, people are sometimesstill told that diet doesn't matter.
Although we have so much evidenceto the contrary, I feel confident

(00:48):
in saying that diet does matter.What is very much an active area of
study, however, is which diet isright for any individual patient.
My guest is Stacey Collins.Stacey is a dietitian who
specializes in supporting peoplewith IBD as they manage nutrition.
Her philosophy includes the ideathat we should think about
nourishment in terms of additionand not restriction.

(01:11):
She explains why diet is important,how food is also about joy and
connection,as well as nourishment, and how
the Mediterranean diet is more ofan idea than it is a blueprint.
Stacey, welcome to about IBD.Thank you. It's so great to be here.

(01:32):
I'm so excited to talk to you fora bajillion and a half reasons
that the listeners will understandas we get into this episode.
But first, I would love Staceyfor you to introduce yourself
and let the listeners know alittle bit more about you.
Well, I'm Stacey and I was diagnosedin 2012 with moderate to severe
ulcerative colitis when I was just awee baby junior at the University

(01:55):
of Texas at Austin, and I thoughtI was dying. And good news.
Still alive. Still alive.So ultimately ended up needing a
J pouch.I guess this journey really began
whenever I asked my doctor what Icould eat, because it felt like even
water hurt to digest at the time,and he was like, oh, good news,
diet doesn't matter.Oh boy, I know. I know.

(02:22):
So that's what brings me here.Oh, gosh.
So first of all, Stacy, uh, do youoften have to tell people you're
from Texas? Or do they pick that up?You know, it's interesting.
Sometimes the accent will come outto play, and other times people

(02:43):
are like, well, I had no idea.You could have told me you were from
California and I wouldn't know.And I'm like, you are lying.
But, uh, yeah, sometimes it'svery obvious that I'm from Texas.
Sorry. No, that's so funny.Um, I'm a Michigan native,
transplanted to Connecticut,married to a Long Islander,
so sometimes my accent is allover the place, depending a Long

(03:08):
Islander who is the son of, um,people from Brooklyn. So.
So it depends on who I'm talkingto as to what what I sound like.
So it is a lot of accents.Yeah, yeah, a little bit a little,
a little bit. Um, my poor kids.Uh, no, I think, I think I think
they're firmly New Englanders.But anyway, um.

(03:29):
All right, so, Stacey,as you alluded to a little bit,
you were diagnosed in 2012.It sounds like you had a really
severe case that even water hurt.I don't know that I even got to
that point, but I've heard thatfrequently from guests on this show.
And you live with a J pouch.So tell me a little bit about
what led to your having surgery.It was quite an adventure.

(03:55):
I did not realize that mydisease was severe because I
thought it was terminal.So when the doctor was like,
you're not dying of colon cancer,I was like, let's party. Let's roll.
And so I did not realize thatthis was a lifelong thing.
I didn't realize that.You know, if you stop taking your

(04:15):
Remicade, you end up in the hospitaland you feel so well, Stacy,
because of that Remicade infusion.Amazing how that works.
But I really just didn't receiveany education when I was diagnosed.
And also, I had never had reallyany interaction with the health
care system at large.I grew up with no flu,
no like headaches, no nausea,no ear infections.

(04:38):
So I had no idea how to be a patient.So that in itself for me was a
learning curve.And then pretty soon thereafter,
my hospitalization or my diagnosiswas my first hospitalization.
And during that hospitalization,I learned from a really sweet doctor
who became my doctor for many yearsthat this was a chronic thing and
that I needed access to my Remicade,and without getting my Remicade,

(05:01):
I probably would end up withsomething terminal like
colorectal cancer because of theseverity of my disease.
And it was really prudent that Icontinue to get the prescribed
medication in order to live avery good quality of life.
So Remicade worked for me verywell for several years,
and when I say very well, I still wasprobably sick about four times a day.

(05:24):
I still had about two hours inthe morning that were relatively
unpredictable.But I just got to where I was
learning to live my life thatway and normalizing that.
This was just the quality oflife that I needed to accept.
I was still running all thesehalf marathons because,
bless her sweetheart, she's in her20s and she's gonna she's. Gonna.
Burn the candle at both ends.Um, I was learning how to be a person

(05:48):
in the workforce with these symptoms.Learning how to, you know,
communicate why I was tardyevery day.
Um, learning how to just be a person.I feel like I really grew up
with this disease.And so eventually, um, moved to
Oklahoma after I got married.And that was the biggest disaster

(06:10):
that could have happened with mydisease, because my doctor did not
seem to understand that I had amoderate to severe flavor of the
disease because I was in six monthsof remission whenever he received me.
Um, so he just didn't seem to havea sense of urgency around writing

(06:30):
the prescription for my Remicade.And I ended up about 16 weeks
late receiving my Remicade, um,which was actually a biosimilar.
Whenever I finally did receive it,no one briefed me on that.
So I remember just like completelypanicking at the infusion center
when I looked up and saw that itdidn't say, um, Remicade, infliximab,

(06:51):
it said That Inflectra and securityhad to come in and it was a whole
big ordeal. Oh my gosh. Yes.So they were like, oh, I grew up.
They were like,this is a combative patient.
There were people on walkie talkies.It was.
Oh, you got some spice in you,don't you? I do. I do.
And then yeah,the doctor basically was like,

(07:12):
oh, she's one for the theatrics.And I was like. Oh, I.
Just didn't know.I thought I was being given the
wrong medication. Yeah.Because this was also let me
think this was in 2017.So I wasn't quite aware of the
biosimilar sphere anyway.So that was super fun.
And needless to say,because of that 16 week tardiness

(07:33):
in receiving my medication,my disease reared its ugly head and I
ended up in the hospital several,several, several times, not
responding to any of the medications,just kind of marched through them.
Eventually made my way back to Texas.Had a phenomenal nominal doctor here,
and I was told that I hadexhausted all my options and would

(07:56):
need a total connectome, whichin my mind was a death sentence.
I thought that meant my life wasover. Which is funny.
It's almost like, you know,dancing with the devil you know is
better than the devil you don't know.I probably got that wrong because
I'm very bad at idioms, but it'ssomething like I would have just

(08:17):
rather continue marching throughthe medicines because I had kind of
grown into adulthood doing that.And then whenever I got my total
connectome, I remember being like,wow, do people just live with
this level of energy?Yeah, I understand that. Yeah, yeah.
That's kind of what led me to JPland. Yeah.

(08:37):
So it was really the or was it?Am I, am I contextualizing this
properly that it was really the lackof another medication option, like
nothing was working for you anyway,and there was nowhere else to go.
It was.And also, there were so much in my
personal life that was going on atthat time that I assure you, like,

(09:00):
you could not have tranquilized me.Um, there was just so much that I
was healing from with very, um,honestly intense things that I kind
of planned to write, like ghost writea book about one day, maybe. Yeah.
But yeah, it was just like,there's no way that I would have
responded to medicine, given all thatmy body was enduring from a very,

(09:24):
um, in-depth sort of traumaticresponse to the world around me.
Um, so I think it was kind of aboth and. Yeah, I understand that.
So prior to having the surgery,had you done any research into it?
What like what did you know about itbefore they presented it with you?
You said you thought it wasgoing to be like a,

(09:45):
like a death sentence that like,you know, your your life was
over before it began. Like what?What led you to that thought?
I was kind of told at the dawnof my diagnosis the day that I
was diagnosed.You can either have your whole
colon removed today or you canstart Remicade. And so in my mind.
Just that's a wild choice.That's a wild choice.

(10:07):
Yes, it's a wild choice.And I remember thinking it felt
like an amputation.And I think that in itself for
me was just mentally I didn'twant to read about it.
I didn't want to consider it apossibility.
And when I tried to, it was a lotof Reddit forums on people talking
about how bad their lives are. Yeah.And I was like, no, thank you.

(10:30):
Not interested at all.Um, and I found that a lot of
people who maybe had a really goodexperience with the J pouch almost,
like, romanticized it.I felt I felt like it was really
hard to find a middle ground.Like, just tell me what a life.
A day in the life is like.Can we not put this on a pedestal?
And can we not act like life isthe worst thing ever?

(10:51):
And because I couldn't find thatmiddle ground,
I just opted not to read about it.And I think it was just the fear
of the unknown for me.Yeah, that's so interesting.
I, I understand what you're saying,and I often say that there's kind
of a skewed perspective online ofJ pouch and maybe even ostomy,

(11:14):
because people who are doing well areoften living their lives, and you're
hearing from people who are notdoing as well after their surgeries.
But to think about it in a way thatit could be romanticized and that,
you know, the polar opposite of itbeing that that people with less

(11:35):
than happy experiences with it.And now I'm wondering where I
fall in that spectrum,because I think I think I may
romanticize that a little bit, Stacy,because after ten years of disease
and then waking up ridiculously.Waking up in recovery, feeling better
than when I went into the surgeryis like, that was my experience.

(11:58):
And so no, I kind of agree with you.I think that's kind of where I
am now.I think I tend to romanticize it.
Like this morning I had thisbreakfast full of seeds and I was
like, this is fucking awesome.I'm sorry, I'm sorry. Yeah.
No, you're good, you're fine.It's it's the sentiment is well
taken.I also have seeds in my breakfast.

(12:20):
Because you know why I say?Because I saw a dietician and she
was like, hey, don't be afraid ofputting some hemp seeds in that
oatmeal in the morning. Amber.Just see how it goes. So, um.
Well, what were you studying inschool to begin with?

(12:40):
You're a dietitian now?Was that what you were? You began?
No. Oh, bless my sweetheart.So I started out, you know,
very idealistic.I was like, I'm gonna be a surgeon.
Uh, so I was pre-med, pre-nursing.And then I realized that you
have to be pretty good atorganic chemistry for that.

(13:04):
CS, in fact,do not make medical degrees.
So I changed my major to sociology.I was like, what on earth am I
going to do stuff? Science.Great, great. So we're gonna pivot.
But then I realized that Ireally missed healthcare.
And so I ended up gettingaccepted in nursing school.

(13:25):
My first job out of college wasworking on a bone marrow
transplant unit as a unitadministrative assistant.
And in that moment I was like,oh my God, there's a dietician here.
And she gets to treat peoplewith nutrition. That's wild.
Which she let me follow her aroundon the unit, and I realized that

(13:45):
she was helping people, goingthrough some of the most intense
times of their lives, like stillfind safety in their body with food.
And she would spend so much time atthe bedside with these patients.
I felt like nurses wereconstantly running around from
patient to patient and having tochart excessively.
And it just kind of gave me an upclose look at kind of the life that

(14:06):
I actually wanted when it cameto health care, and I instantly
became angry because I was like,why did a doctor tell me with a
digestive inflammatory disease,that diet doesn't matter.
And this little wind chime of a unitin this hospital has a dietician,
and everyone knows her,and she knows all her patients and
their families and really gets tocaregiver in a way that feels like

(14:30):
it would be really gratifying.So I instantly changed my mind,
declined my acceptance tonursing school, started taking
more chemistry because. Spoiler.Alert, you have to take a lot of
chemistry to become a dietician.So I had to retake.
Organic chemistry one and two.And the labs biochemistry did one

(14:52):
prerequisite at a time becausethat's all that I could afford.
Um,as I continued to work in hospitals.
And then eventually that led me to,um, kind of in my late 20s,
getting accepted to a graduateprogram at OU Health Science
Center in Oklahoma City.And that's where I did my
training to become a dietitian.So it was a long time coming for me,

(15:14):
but I'm glad it worked out.Yeah. Me too.
Where was the J pouch surgery inthe midst of this? Oh.
Great question. So, Josh. Surgery.During my grad school,
I was in the hospital everysemester because it was just
like steroid taper with entyvio.Then you get off steroids and

(15:36):
you're dying.And then steroid taper with,
you know,inflectra or stelara or whatever.
And then you get off steroidsand you're dying.
So that was just kind of theroller coaster that I was on
while in grad school.And then immediately after grad
school, while I graduated duringthe pandemic.
And then I thought that would be agreat time to get JPP out surgery.

(15:58):
So I thought, yeah, I got J pouchsurgery pretty much immediately
when I graduated from grad school.Um, in the pandemic,
also working as an ICU dietitian forpeople on life support with Covid.
So great times were had all around.Oh, boy. Yeah.
I want to ask you something thatI think about sometimes,

(16:22):
and you and I are a little similarin this being post-surgical and
seeing all of the new therapiescome online for ulcerative
colitis the past few years,does that give you any feelings?
Do you have any thoughts around that?I almost want to hear your thoughts.
Oh, yeah. Okay.I was going to say you could pass

(16:44):
on answering this question if youwant to, but, um, I feel like I
should have more feelings about it.You know, um, because I, I'm like,
it's great. It's wonderful.It presents kind of good
problems to have and how tounderstand which therapy to use.

(17:06):
And are you, you know,switching things all the time while
you're trying to find the right one.That works.
Because we don't really have like,personalized medicine and IBD yet.
I don't have any feelings like Ithought I might have had,
for instance, like, why wasn't thisaround before my disease got so bad

(17:28):
and then I needed surgery myself?My life could have been different.
Like,I don't really have those thought,
like I'm good with it, you know?So I just I just wonder how
other people feel.No, I don't think I agree because
like I said, I truly think you couldhave tried to tranquilize me and my
body still would have been like,we're here. I really do believe that.

(17:48):
Like, my body takes on a lot andI love her for that.
But also, like, I don't think there'sany sort of medicine in the world
that my old sort of colitis wouldhave been like, this is the one.
Like, I'm pretty sure four weekslater, like clockwork, should have
been like, I'm not impressed.I'm really grateful that I had

(18:10):
IBD when I did.It's so weird to even say that.
Like it like it's past tensebecause it's really, truly not.
I mean, I'm still I'm on currently,I'm on Rinvoq and I'm really grateful
for that medication, so I don't know.I'm grateful because talking to
people who had J pouches,you know, decades and decades
and decades before I did,they were some of this like I met

(18:33):
someone on Instagram who was like,I was the first person to have
one in Europe. I was like, what?Stop it. Really? Yeah. Oh my gosh.
And they were like, I've neverfelt so alone in my whole life.
And it's so nice to see this newgeneration of people thriving
with their J pouch.And I love my J pouch and I'm so
grateful.And yeah, so I don't know, I, I,
I think I'm thankful for the waythat things have shaped out.

(18:56):
I mean, overall, I'm also pissed.I also identify with that deeply.
Up next, Stacey tells us aboutnutrition by addition.

(19:24):
Stacey, I want to talk for a fewminutes about or maybe a lot of
minutes about advice regarding diet.I so often see us telling people,
and I include myself in this.Telling people what not to do.
And I think we need to turn thetables and tell people maybe what

(19:45):
they should do, what they caninclude, what they can't eat.
Much like my dietician telling me,hey, put some seeds in that
friggin boring oatmeal that youeat every morning.
Um, so how do you approach this ideawith the patients that you work with?
I love nutrition by addition,and I think that your dietitian is
doing, as we would say in Texas,the Lord's work. Um, oh, yes.

(20:08):
Because she's also like a bonustherapist for me, whether she wants
to be or not. So yes, we all are.Everyone comes thinking we're
just going to talk about food.And then every now and then someone
will be like, so my mom was onthe Atkins diet and I'm like,
yep, we're going there today.Well, she told me people sometimes
cry, so I never did that. But yeah.Yeah. Oh all the time people.

(20:30):
Yeah. Food is deeply personal.Yes, food is deeply personal.
And it's lazy advice to just sayrestrict this, restrict this,
restrict this.I did not get a hard earned
master's degree and take copiousamounts of chemistry to
prescribe blanket restriction.So the way that I approach this

(20:51):
with patients is first,I want to know what you are eating.
I want to get eyes on your mealsif I can.
If that feels like it's notscary to you.
I always tell the moms, I wantpictures of your floorboard crackers.
I want to know what your lifelooks like through food because
it tells me so much.Are you rushed? Are you a nurse?
And you can't sit down and eat?Are you having to, like,

(21:13):
shove snacks into your pockets? Um.What does your life look like
through food?And based on that, it's important to
be really realistic about what we canstart to add into a person's diet.
So we're starting to see a reallycool tide shift in nutrition where
we're focusing more on inclusion.And I think it's going to take a

(21:34):
while for this to catch fire onsocial media.
At least it seems like peopleare still really obsessed with
less is more. What not to eat.What. Not. To eat.
Um, but I think it's importantto acknowledge that IBD gives us
a very profound and valid reasonto fear food.

(21:55):
Like we have a digestive diseaseand food hurts.
I just told you that water hurtme to digest,
so you can imagine how anythingelse felt in my body to digest it.
And I tend to have patients who havea pretty colorful history with IBD.
That just seems to be who I attract.Um. For better or worse.
I don't know why. Yeah.And so I want to first, like,

(22:18):
validate. Like, that's a fear.That's been a survival instinct.
And it's protected you.And also,
we know that this disease thriveson a lack of bacterial diversity.
In fact,that's one of the cornerstones of
how this disease even comes to be.So how can we move past that fear
in a way that allows you to feelmore safe than not in your body?

(22:41):
I kind of see that as a continuum,and start to add something in
your diet that's going to promotethat gut bacterial diversity,
because as I learned from adietician friend and mentor,
Laura manning from Mount Sinai,who's doing fantastic work on J.
Pouch Nutrition, by the way,we owe her a great deal of thanks.

(23:04):
I feel like, um,she says that food is fertilizer.
And if we can start to think ofhow we can populate our little gut
bugs with foods that feel more safein our body than not, um, that's
all we need to kind of build on.And it just it just takes a little
bit of experiencing new foodwith a sense of safety so that

(23:26):
you can explore with curiosityrather than judgment and fear.
And that's truly all it takes.But it's way easier said than done.
Yeah, because I feel like thisis not only about what are you
making for your meals.It actually goes back to a mindset.
Yes.And perhaps unlearning things

(23:50):
that people may have told you,or that you have just learned by
living in your own body.So yeah, it's so interesting.
Well, I mean,I'm so glad to see the shift.
You know, I was diagnosed in thelong, long ago and I've been in
this space for a while,so I was in the diet. Doesn't matter.
See this? This is wild, Stacey.Diet doesn't matter,

(24:12):
but also eat low fiber.Like, that's what I was told.
Like, so, you know, and when Iwas a teenager and young adult
that that that hypocrisy didn'treally become clear to me until,
uh, honestly, until I had J pouchsurgery because that was the that
was actually the first time that Iever saw a dietician, so I'd had

(24:33):
disease for a long time beforethat that ever even took place.
And when she was all about flax.Oh, gosh. Dear Jesus. Wow. Oh my God.
Um, was that a was that a dieticianlike that came to see you when
you were recovering? Yes, yes.Right around it on me. Yep.

(24:54):
She didn't know anything about Jpouch, so she. No. Definitely not.
And basically she was like,well, you know, horse is kind of
out of the barn here.But let's go through, you know,
the steps that I normally gothrough with, uh,
with patients with digestive disease.And I just remember her telling me
about flaxseed oil, and I don'treally remember much beyond that,
because I had to learn how tolive in my new body, and there

(25:18):
was nobody to help me do that.I just had to figure it out even
today. Yeah.Um, so add to that even today.
Yeah. Um, really? But these.But the old ways of doing things.
And you're a perfect example of it.You were diagnosed at a time when it

(25:39):
should have been different for you.Let me just put that out there.
Uh, you know, and we know better now.But those old ways of doing
things never seem to go away.I was told to eat low fiber.
There's still people that are told toeat low fiber, and then they're never
told no one. You're doing better.You can actually expand what
you're eating and how to goabout doing that.

(26:00):
Um, so as far as you're concerned,what is the biggest thing that the
IBD community needs to unlearnin terms of diet and nutrition?
I think that more is more isactually what we need to learn.
So if we can unlearn thatwhenever we are in a flare and we

(26:21):
feel unsafe in our bodies and wewant to control, it's like that.
Control is what we're chasingbecause we feel so out of
control in our bodies.Um, so a lot of us do that by.
I'm just going to go back to basics.That's what I hear a lot of patients
say. I'm going to go back to basics.What do you think that means?
Uh, white rice. White bread.Jello broth. Yes. Correct.

(26:45):
That's what it. Was for. Me.You were 100% correct.
That has not changed.That is what back to basics mean.
And so I want patients to understandthat even in the absence of IBD,
even if we remove IBD from the tableand undernourished body is one
that is going to have dysbiosis.So we know that people who have

(27:06):
chronic undernutrition are at highrisk for developing any sort of
GI related disease or disorder,simply because they don't have that
bacterial diversity in their gut.And so whenever we're experiencing
this heightened level ofinflammation in our bodies that
actually requires more energy,more protein, more vitamins,

(27:27):
more nutrients to heal from.We're actually kind of shooting
ourselves in the foot by saying,I'm prepared back to basics,
and I'm going to not give my gutthe bacterial diversity that it
needs to heal,and I'm going to reduce my caloric
intake that I need to help fuel mybrain in this time of distress.

(27:47):
And I'm going, like, we're doing allthese things as a survival mechanism.
Slash as you said,maybe it's something that's been
passed down and told to us.I think it's a little bit of a
healthy mix or unhealthy mix of both.Um, so I want patients to understand
that there's a way to maintainthat sense of safety in your body,
but you need to keep that colorin more really is more.

(28:09):
So if you're able to throw thingsinto a smoothie, if you're able to
throw things into a slow cooker,soup or stew and make sure that
you're still getting lots of herbs,lots of different vegetables that
are fork tender against the roof ofyour mouth if that's safe for you.
Some people will just do better withblender as if they have structuring
disease or newly healed from surgery.It's important to maintain color

(28:35):
and it's important to maintainconsistency in getting more
nutrition.So that's kind of the very big
overarching theme is not less ismore. More is more.
But it has to be kind of titratedto each individual. Mhm.
The first time I ever heard that,that when you're dealing with the
inflammation from IBD means that youneed more food or more calories.

(29:00):
You know,however you want to talk about it,
not less was um Doctor Peter Higginswho's at the University of Michigan,
said that in a presentation,presentations are legendary.
If you ever have the opportunity tosee one of his, I highly recommend.
They're also very funny.Um, and he said that I was probably
D.W., probably like a decade ago.I mean,

(29:21):
you could have knocked me over.Like you could have knocked me
over with.Yes, because I was like,
I'd never heard that before?And not only that, but.
Well, I mean,those days there wasn't really a
nutrition or a dietitian track.Um, but to hear one of the
gastroenterologists say that,I was like, okay, that makes sense.
I literally have never read thator heard that before.
I took that in so that,you know, helped me a lot,

(29:42):
not only for my own body,but also to, you know, to inform
my writing and and to think aboutthe the research that I'm looking
at and how to contextualize that.And, you know,
all of that and thinking back onall the times that I was that I
was put on balance and also. Okay.So fun fact DPW did not have a
nutrition track until last year,and I don't even think it's a

(30:05):
full fledged track yet.They just started inviting
dieticians last year. Yes.That seems what it has been like.
Yeah.So we're just we have a ways to
go when when doctors are like.Diet doesn't matter.
It's like, well,invite us to your party.
We will always bring a good snackand we'll help you understand
how to inform quality nutritioncare for your patients.
Invite us to your party.We want to hang out.

(30:28):
So, Stacey, on the heels of that,you and I have talked about joy,
experimentation,creativity when it comes to food.
How do you how do you find thisfor yourself?
Your your journey was reallytraumatic in so many ways. Yeah.
You know, and and the way,the way, yeah.

(30:51):
The way that you came to be adietician and to to, you know,
have interest in food.Uh, and then for us to talk about
having seeds in our breakfast afteryou said that water hurt like.
So how are you doing this foryourself?
Yeah, well, I have a therapist.I have a dietitian.

(31:13):
Like, I have my tools, and I.I learned that, you know, you have to
rely on your tools when you needthem, but also, like, let them
help you live a really large life.Um, so I try really hard to see
everything as a continuum ratherthan, like, all or nothing,
black or white.I think that really helps me

(31:34):
personally.Um, so sometimes that means, like,
how can I try to remind myselfthat I feel safe in my body?
I don't know about you.I actually have this question
for you. I'm promised.I'm going to answer your question,
but do you ever notice that you have,like, flare brain, where it feels
like your brain is in a flare,but you're you're having to remind

(31:54):
yourself that your body is safe? Yes.And I think I think that that has
a little bit worn off over time.But in the beginning,
especially in the first severalyears after J pouch surgery, I had
to remind myself that it was okay.I had to I mean, you know, it gets

(32:19):
it gets real weird, but like like,you know, like, I would have dreams
about losing body parts and,you know, less than optimal ways.
Like, there was, like, just,like a lot.
There was just, like,a lot there to work through.
And so I had to continually remindmyself, and actually, it was my ob

(32:39):
gyn who said to me in a way thatI hadn't heard it put before,
she I think I was just natteringon about something, which is what
I usually do during an exam.I'm like a total motormouth
because I'm uncomfortable. Right?So I just, you know, yada yada.
And so I'm just like, talk andtalk talk talk talk, talk, talk.
And her and my surgeon wereacquainted. So she knew.

(33:01):
And I said to her something about,you know, because we don't know
how long, you know, that JayPouch is going to going to last.
And she was like, well, you know,it is your natural tissue.
So we don't really have anexpectation that it's going to like,
wear out in any kind of way.And I was like, oh. So. Wow.

(33:23):
So I guess also it took kind of likean authority figure who knew me,
knew my life, knew my body,delivered my babies.
Um, to help me understand thatin kind of a different way.
Because Stacy,I am I'm kind of black and white.

(33:45):
I have trouble with the gray.Um, so, you know,
I'm still struggling with thatin a lot of different ways.
And part of it is the black and whiteof your sick or you're not sick. Mhm.
You know, or you, you know, you'rein remission or you're not, not in
remission like how that all works.So I have safety in my body now.

(34:10):
But it definitely took time toget there. Right. Okay. Yeah.
So interesting.So I also am a very black and white
at baseline kind of creature,and a lot of this is just work for me
of trying to embrace the gray area,because so much of it all feels
like the chronicity of it feelslike it has to be in a gray area

(34:33):
sometimes for me.Um, so if I can find a way and
answer to your question, if I canfind a way to experience safety
in my body, more often than not,if I can remind myself of ways
to feel safe in my body,that's how I can begin to get
curious around the experience ofeating without that at baseline.

(34:57):
More often than not,I'm not going to be able to have
joy and pleasure around eating.It's just not a sustainable,
feasible goal for me.So a lot of it is reminding
myself what is true.And by doing that,
I can maybe go on a walk.I've gotten to where here I am,
like I've had so many years ofjust trauma to my body that has

(35:21):
required so much capacity forhealing that I've had to make.
Intentional room for and justreminding myself that, like all
along my body has been healing.Even though it hasn't felt like it.
And so I've just now gotten to thepoint to where I can throw around
some weights in my backyard and like,really move some energy through
my body that way and feel reallyconfident in my ability to,

(35:42):
like, be strong in my body.But it's taken so many years of
just like, I'm going for a walk andI'm going to look at the plants
and I'm going to remind myselfthat I have two feet underneath
me and I'm walking, and then I'mgoing to go back home and I'm
going to give myself a sandwichbecause I deserve nourishment.
And I'm not going to overthink thefact that it's just a PB and J,

(36:03):
because I'm just focusing on givingmyself nourishment at this meal time.
And so it really has taken timeand years and years and years of
practice to experience joy.But it's gotten to the point now
to where and I will.This is the part where I'll get
emotional talking about it, but I hada dietician help me understand that.

(36:25):
Like I could have a meal with myhusband.
And so like every Friday nightwe have Pasta Fridays where we.
It's the most bougie thing youcould imagine.
We Italian import our pastas,and we try to find like San
Marzano tomatoes from Italy.And we like try to source these
different things from differentareas of the world to make

(36:47):
different cuisines.Um, and by doing that, we're able to
just like, have the experience ofcooking for three hours together.
And during those three hours I mightdecide to have a glass of wine,
but I don't go to the bathroomlike I'm able to participate in a

(37:07):
full meal. Mm. This is this is.I didn't expect this.
I'm able to stand around thestove and not feel fatigued.
I'm able to like, take in all ofthe scents and the meditative like
experience of chopping up vegetables,and it feels the whole thing for

(37:34):
me feels very like sacred and new.And it's not that I'm eating out
of survival, it's that I reallydo get to eat with someone that I
really love, and I get to experiencepleasure in my body that has worked
really hard on my behalf to heal.And so I guess an answer to your

(37:54):
question.It's been a really long road and
it's been a spectrum.But if I can help patients
understand that they have acapacity for healing and that they
have every right to deserve that,to know that they deserve to
experience pleasure around a mealin their bodies with a digestive

(38:15):
disease, then I've done my job.Like,
even if that's not an accessible.Goal for them today,
I want them to revisit it.Because with this being a remiss,
relapsing thing, it will be somethingthat they can revisit at some point.
And I just want to be the personto remind them like that.
My dietician has been for me,to remind me that you still deserve

(38:37):
to experience pleasure in your body,around the experience of eating,
and that's the ultimate middlefinger that you can give to IBD.
Oh my gosh, I love that so much.I do love a good middle finger,
usually both of them at the sametime.
Um, and yeah,and the idea that we have to give

(38:58):
ourselves permission and that's,you know, often someone else has to
help us to learn to give ourselvespermission to enjoy a meal.
And then what you're describing isenjoying the food from beginning to
end. Also the the creation of it.The the chopping, the you know,

(39:20):
all of that, but also the inclusionof someone you love, being there with
you and helping reinforce those,those positive feelings around this
process and that it's somethingthat you enjoy together and that
we have to allow ourselves thetime and the space to do that and

(39:43):
that also that we deserve it. Yes.I mean,
because the disease is so punishing.Yes, we deserve pleasure and yes,
yes, this is a punishing disease.And notice I'm not doing that
with every meal.This morning I had seeds,
which was excellent, and I had alovely breakfast, but it's not

(40:05):
like I had all the time in theworld to stand around my kitchen
and just cry at how happy I am tobe in my body. Like, that's not.
it's not a sustainable, um,all the time sort of thing.
But I think that, you know,it's it's a glimmer.
It's something to, uh,to acknowledge.
It's the mundane magic thatcomes with, um,

(40:29):
life that we romanticize. Yes.Well, yeah,
we're definitely romanticizingit a little bit right now.
During the pandemic, my husband and Ihad this kind of quirky cookbook,
and we just cooked a bunch,like we just started in the
beginning of it and just startedmaking our way through the recipes.

(40:51):
I love it. And it was something.I mean, of course we made content
out of it because, you know,that's that's who we are.
But at the same time,it was like we had never, you know,
cooked together like that before.And we just we had a little bit
of time and,and I would say that I I am not a

(41:14):
very experienced cook, but I try.And so thinking about that has
opened it up a little bit to me.You know, so that it's less about how
do I get a meal on the table thatticks all the boxes for everybody?
Um, everything from the foodallergies to the likes and

(41:36):
dislikes to the intolerances to.Are we making sure that we're
following, you know,the my plate that the kids are
are taught in school now?Um, as much as we can,
but also creating something that'sjust fun and also looks interesting.
And like all of that.And so, yeah, I guess, you know,

(41:58):
the way that you're describing it is,uh, in terms of permission and
finding joy.Sort of a sort of came to it,
but in I fell into it.You know what I mean? Yeah.
yeah, it's kind of like it was a fun,creative project. Yeah.
Which I mean, and that's how almosteverything happens in my life.

(42:19):
I just kind of fall into it. I mean.Honestly, I can, I can relate.
Yeah, but it is the honest truth.Coming up, Stacey demystifies
the Mediterranean diet.

(42:46):
I was just talking to somebodythe other day about I was being
interviewed and we were talkingabout nutrition and what a big
what a big topic it is.And for all of the different
reasons why, which you and Ihave gone through here.
And then I mentioned somethingabout the Mediterranean diet,
and it's put forth usually asthe diet plan that we should be

(43:08):
trying to follow when we have IBD.Um, I have, I have books,
I have cookbooks, I have all sortsof information on this diet.
Um, I literally spent some timein the Mediterranean. Amazing.
I'm still confused.I'm still not quite there with it.

(43:29):
And yesterday, as I was in thegrocery store and you're shopping,
you know, as one does in thegrocery store, the. Grocery.
Store and the grocery store.Well,
I was avoiding the the the robotthat chases me around the store.
Um, it ah, ah,we don't make it easy for people.
Like, it's not easy to eat this way.I think that's why I'm confused.

(43:52):
And is there just any, like, broad,you know, really high level advice
that you can help people with whenthey're when they've heard this and
they're trying to internalize it andtrying to do something with it? Yeah.
I think if you focus again oninclusion.
If you're naturally including thingsthat are aligned with the quote

(44:13):
unquote Mediterranean diet, whichI'll talk a little bit more about,
then you're naturally excludingthings that are not part of it.
The thing is, you can call it theAmber Tresca diet if you want.
You can call it whatever you wantbecause the Mediterranean diet
is named the Mediterranean Dietbecause it's focused on, well,

(44:34):
places around the Mediterranean.But it's also like pretty white
places, if you think about it.Greece? Yes. Italy.
It's not really talking a whole lotabout Turkey and Tunisia and Morocco
and all of these other countries thatare also part of the Mediterranean.
And so I've worked with peoplewho are Texan, who are Mexican,
who are Tex-Mex, who are FirstNations, and all of these people

(45:01):
are able to eat a mediterraneandiet just by checking a few boxes.
So it doesn't matter what youcall it.
If you're able to get, you know,three servings of fruit a day,
three servings of vegetables a day.Um, and and not all at once.
If you're going from 0 to 3fruits and three vegetables,
you're going to have tremendousGI distress, and you're never

(45:23):
going to talk to me again.So that's, that's, you know,
first priority. Second priority.Are you able to get two servings
of legumes lentils, beans, peas.Are you able to get two servings
of whole grains a day?And they they don't have to be gluten
free. Or they can be gluten free.It doesn't really matter.

(45:43):
Some gluten free, um,options or oats. Millet. Buckwheat.
Teff and corn. Um, flax. And rice.So, um, there's no good evidence
to suggest that you need acompletely gluten free diet.
But when we think about that gutbacterial diversity and the lack
thereof that often is accompaniedby IBD, we want to think again.

(46:06):
Food is fertilizer.And so maybe rotating your grains.
I don't know about you, Amber,but my mom had, like, you know, those
glass jars full of different pastas.And I was like, oh,
are we having macaroni?And she was like, no, that's
decoration. Like, oh, I didn't I.Didn't realize where you were
going with that.No, we did not have that. Okay. Okay.

(46:30):
So I remember my mom would just likekeep pasta in glass jars growing
up and but they weren't like,it was just, you know, look,
but don't touch.It was like, well, no,
we're not having that for we'regoing to have like Kraft for dinner.
We're not going to have that pasta.That's for decoration in the
glass jar. Interesting.But I do recommend like keeping
things in glass jars andactually using them,
rotating those grains out.Like right now I have orzo in a jar.

(46:53):
I have buckwheat in a jar,I have oats in a jar.
And, you know, in two weeksafter I've gone through those,
I'll have something else rotatethem out. Um, couscous.
Semolina pasta. It doesn't matter.Okay, so, um, another priority is
focusing on lean protein sources.So fish chicken turkey eggs
Greek yogurt.If you're able to get two servings

(47:14):
a day, a lot of people arefocused really hard on protein.
And it is important.But it's also like the lowest
priority of all of ourmacronutrients because as Americans,
we tend to make meat the star ofthe show on our plate anyway, so we
don't have to, like, obsess overprotein or getting enough protein.
It's okay, especially if youalso have legumes in your diet.
Um, and then two servings offatty fish a week. Salmon, tuna.

(47:39):
If you don't like those things,it's okay.
You can get your omega three,which are potently anti-inflammatory
from other things like chia seeds,flax, walnut.
By the way, I don't fuck with flax.So sorry I cussed again.
Um, it's just like one of thosethings from IBD that I'm just like,
you know what?Some things aren't worth the fight,

(47:59):
and it's one of those things.So, um, and then lastly,
healthy fats, Avocado.Olive oil is your healthy fats.
Yeah. Yeah.Those are kind of the components
of the Mediterranean diet thatyou want to focus on inclusion
rather than exclusion. Yeah.I feel like when you lay it out
like that, it sounds more doable.And it also sounds like the way I

(48:24):
have shifted our family eating.You know, as I've understood a
little bit more about it now,what everybody does when they're
away from me, I don't know.Uh, so I can only control you do
your thing for breakfast and dinner.We do our best. Do our best.
Beans are always on the table now,and so is salmon.

(48:45):
And I don't even like salmon,but I make everybody eat it,
including myself.Um, but, you know, I was at the
Trader Joe's the other day, and, um,because that's where I buy my salmon.
Because they have wild caught.And, uh, the cashier was so funny.
He was like, well,how do you cook this? Whatever.
And he goes,you know what you should do?
I said, yeah, you know,I find different ways,
so I don't really I still haven'tcome around to loving it, you know.

(49:07):
And he says you should chop it upand, like, fry it in some batter.
And I was dying because I was like,okay, it might be good,
but I don't know.You like that wasn't actually
the goal of consuming the thing.That wasn't the goal.
But the goal was, uh, was, uh,increasing the diversity in our
microbiomes.And, you know, for, you know,

(49:30):
especially for the less me,more of the kids and all that.
But I was really funny.I still may try it one day.
Um, I'm really laughing. Yeah.And I'm really laughing about
the idea of an average diet,because the average diet would
be filet mignon and bourbon,and that would be it. Um, so.

(49:50):
Well, we might need a little bitmore diversity, so. Okay. All right.
Well, those are good bones.You know, those are.
It's a good start.Bourbon does have corn,
and that's a grain. Okay.I'm trying to make an argument for,
you know, you're trying to helpme out for you, but, um,

(50:13):
but also like the Amber Tresca diet,maybe not so much, but with with
some minor tweaks to make it moreMediterranean is associated with
decreased risk for patch itis.So cheers to that. Yes.
And there's that.I don't know how to contextualize
how much research there is or isn'ton avoiding pouch itis, and I've

(50:38):
only ever had it twice in 25 years.That's pretty good. Um, yeah.
Although when I had it,it was really,
really clear what was going on.Um, and I actually think it may have
been once and it was just we didn't,you know,
beat it back enough the first time.Um, but that's when I really

(51:00):
started paying more attention todiet and shifting away from the
standard American diet andthinking more about all of this.
So. So you did it all on your own.It's like you figured out the secret
that diet really does matter.Hey. I know. Look at your. Mom.
Know degrees. Figure it out.You're smarter than me.

(51:24):
I was like, must take more chemistry.So angry. Must. Yeah.
Your boy smarter than I am. Oh.Anyway, uh, no, not at all.
You are way smarter than I am.It's been a joy to speak to you
and Stacy,I have my last question for you.
Is probably going to be the one thatyou're going to dislike the most. Uh.

(51:46):
And that is,how can people connect with you?
So tell me about Stacy CollinsNutrition.
Tell me about your website.And tell me where you hang out
on the interwebs.Well, if you want, you can go to
Stacey Collins Nutrition. Com.I have a really beautiful website
designed by Fly Dog Digital,which I feel like I only mentioned

(52:09):
because people are always like,wow, did you do that?
I'm like, Good God, no. No.So I and I also want to give a,
you know, female founder creditwhenever I can and they're fantastic.
So, um, Stacey Collins Nutritionis my little private practice.
That has grown to be a reallycool space for people going

(52:31):
through surgery.Um, pre during post-surgery
nutrition is my favorite peoplehealing from malnutrition with
nutrition and medicine.Um, I really kind of see my little
virtual spot as just a little virtualspot to kind of support you in your
IBD journey alongside your GI care,alongside your medicine.

(52:54):
Um, and I just feel really luckyto get to do this as a job.
I really can't believe it's ajob to get to talk to people
about nutrition for IBD.Like, that's just wild, I guess.
In hindsight, it was the goal.But you know, I just didn't know
it would actually be possible.And so I'm just so grateful.
Um, I do have an Instagram atStacey Knell C underscore R.D.,

(53:20):
And I'm unsure where I'm going next,but Instagram feels dystopian
for me right now.I do try to do some Q and A's
there in my stories.I'm trying to find myself. Um.
Recently I've been trying out,um, LinkedIn.
And I gotta say, that's not theplace for humor, so I need to know.
I forgot about that. Yes. Yeah.I thought it would be funny to

(53:43):
be funny on LinkedIn and itwasn't funny.
Everyone was like, congrats on yourMBA. I was like, oh, that was a joke.
Um, it was a joke.An unfortunate outcome.
I'm mostly I'm mostly on Instagramat Stacey Nelson underscore Rd.
Your Instagram I think is fantastic.I understand people are changing

(54:03):
their relationship to social mediafor all sorts of reasons, I get it.
Um, but at the same time,I think that you provide a lot of
valuable information there, and Ilove the way that you present it.
It is very aesthetically pleasing,um, which I appreciate.
And, uh, yeah.So I'm just going to make a case,

(54:23):
you know, maybe you can if it's not,if it's not on the Instagrams,
maybe it's somewhere else.Maybe it's your website, like,
whatever, you know, um,that you're still putting that great
information together for folks.Um, because it's good stuff.
And, uh, you know,you can get it without having to
make an appointment. That's it.You know, it's funny, I always

(54:48):
noticed that I have an uptick ininquiries when I'm not on Instagram.
People are like, hey, I so I need totalk to someone about my nutrition.
I'm like, oh my goodness.So interesting. Yeah.
It's the same as when I noticed.If I neglect a social media
channel for a couple of days,that's when all the followers come.
It's it's it's a wild, wild thing.Yeah. You can't want it.

(55:11):
You can't like, it's like.There's something on. It.
There's something in the universethat is just like, if you want it.
No, no, no, you need to forget aboutit and then people will find you.
So maybe that's what we should tellpeople. Don't think about me at all.
Yeah, that's very funny. It's weird.I'm not going to try to figure
it out.I just know that you're
providing good information andeverybody should take advantage

(55:35):
of it if they can stay. See it.Uh, you and I, I don't know,
we're like.I feel sisters from another sister.
Like, really? It's just I'm.Really grateful to to get to know
you. This is fun. Same, same.And as as a as a woman whose humor
is often misunderstood as well.Uh. Wait.

(55:56):
Maybe that's why I think you'reso funny.
We now each have one other personthat thinks that we're very funny,
even if nobody else does.So good for us.
Thank you so much for doing thiswith me, for putting together
the episode and for all that youare doing for the community.
It is so, so needed and I very muchlook forward to what is coming

(56:21):
next for you in the world of theIBD community. Thanks so much.
Thanks for inviting me. This was fun.Hey super listener,
thanks to Stacey Collins forbeing so open about her journey
and giving us her knowledge abouthow nutrition interacts with IBD.
If you do nothing else after thisepisode, you should follow Stacey

(56:42):
Collins Nutrition Across SocialMedia because she really does
share so much good information.If you want to work with her,
you can get in touch at her website.Stacey Collins nutrition.com.
As always,links to a written transcript,
everyone's social media handles andmore information on the topics we

(57:02):
discussed is in the show notes and onmy episode 173 page on about IBD.
Thanks for listening.And remember, until next time.
I want you to know more about IBD.About IBD is a production of
Mental Enterprises.It is edited, written, produced,

(57:25):
and directed by me.Amber Mix and Sound design is by
Mac Cooney.Theme music is from Cooney Studio.
I can't talk about it.Not be weird, unfortunately.
It's just what I am. I don't know.It was just the IBD made us weird.
Maybe that's where we're headingout here.