December 3, 2025 • 48 mins
The hardest part isn’t always the pain; it’s the fog—those days when the labels keep changing, the meds blur together, and the bills are louder than your body. That’s where Stephanie A. Wynn stepped in, transforming her Crohn’s journey into a movement for clarity, access, and equity.
We sit down with Stephanie—author, podcaster, and founder of the Stephanie A. Wynn Foundation—to unpack how a misdiagnosis spiral, two heartbreaking pregnancy losses, and a sixth GI finally led to answers and action. She walks us through the IBD Patient Navigator Program she built to connect people with the care team they actually need: GI, primary care, mental health, dietitian, pelvic floor therapist, and, when needed, a colorectal surgeon. We talk about practical tools that change outcomes—recording appointments, coming with three priority questions, tracking symptoms and meals, and learning your labs so they can become signals instead of mysteries.
Stephanie also opens up her book Navigating IBD: A Six-Week Blueprint for Better Gut Health which she designed to slow overwhelm and teach the language of care including treatment decisions, and what “knowing your numbers” truly means. We dig into clinical trials—why she calls it clinical research, how to qualify, what to ask about aftercare, and ways to participate through labs or tissue samples to boost representation. We tackle health disparities and social determinants of health head-on: transportation, refrigeration for meds, school support, and why trust is built by showing up with real solutions.
This is a conversation about agency and community for anyone living with Crohn’s disease or ulcerative colitis. You’ll leave with a sharper checklist, a stronger voice, and a reminder that you are not alone—and that the right tools and team can change everything.
If this helped you, follow the show, leave a quick review, and share it with someone who needs a clear path forward today.
Links:
- Link to Stephanie's IBD book
- The Stephanie A. Wynn Foundation
- Racial and Ethnic Disparities in Medical Advancements and Technologies- Kaiser Family Foundation
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_01 (00:00):
Hi, I'm Alicia, and I'm Robin, and you're listening
to Bow Moments, the podcastsharing real talk about the
realities of IBD.
This week we talked to StephanieA.
Wynn.
Stephanie is a podcaster, anauthor, and also founder of a
nonprofit organization, andshe's living with Crohn's
(00:20):
disease.
The Stephanie A.
Wynn Foundation has a mission toeliminate health disparities and
improve outcomes for the IBDcommunity through comprehensive
support services with priorityfor underserved populations.
She also wrote a book calledNavigating IBD, a six-week IBD
blueprint for better gut health.
She also has a podcast calledNavigating IBD with Stephanie A.
Wynn.
(00:40):
We had such a great conversationwith Stephanie, learning more
about her foundation and herlife as an author, and so much
more.
Cheers.
Hi, everybody.
SPEAKER_02 (00:51):
Welcome to Bowel Moments.
SPEAKER_01 (00:52):
This is Robin.
Hey everyone.
This is Alicia.
And we are so, so delighted tobe joined by Stephanie Wynn.
Stephanie, welcome to the show.
SPEAKER_00 (01:00):
Thank you.
Thank you so much, Robin andAlicia, for having me here this
evening.
SPEAKER_01 (01:04):
We are very excited to talk to you because there's
so many things that we havealready started talking about,
but that I can't wait to record.
But our first veryunprofessional question for you
is what are you drinking?
unknown (01:15):
Oh, good.
SPEAKER_00 (01:16):
I am drinking some Callaway Blue spring water with
a drop of non-hydration tablets.
Because you know, I can't justhave spring water without the
hydration.
So I need a little bit of helpthere.
SPEAKER_01 (01:30):
Smart.
Does it have a little bit offlavor to you?
I find that that's helpful forme.
SPEAKER_00 (01:33):
Actually, yes.
So it's the non-strawberrylemonade.
SPEAKER_01 (01:36):
Robin, what about you?
Yes.
SPEAKER_02 (01:38):
First of all, I'm on my little staycation.
So I'm drinking my bubbly waterout of a fancy glass because I
can.
I have cherry bubbly water witha little squirt of lime and also
my regular water becausehydration.
SPEAKER_01 (01:53):
I love that you're doing a staycation.
It's very, very well deserved,Robin.
I got real excited and I amdrinking a coffee Blavardier.
So I think I may have got itslightly wrong because I think
it's supposed to be sweetvermouth, but mine is like
vermouth rose.
So it's it tasted sweet.
So I went ahead with it.
So we'll see.
So cheers, guys.
Cheers.
Cheers.
Cheers.
(02:13):
Cheers.
Stephanie, next question for youis tell us your IBD story.
What brought you into ourcommunity?
SPEAKER_00 (02:18):
So I am a podcaster, but I also like to listen to
podcasters.
And two of my friends, Natalieand Tina, they are patient
advocates in the IBD space.
And so I was like, you knowwhat?
I would love to be on yourpodcast because I'm always for
those that are going throughthis journey of IBD, when you
hear, see, I know this soundsweird, but anything Bowel, I'm
(02:42):
just glued to it.
Like, because I want to know thedetails.
And it was a really good episodethat I came across.
And so I here I am.
I sent the email to see aboutbeing a part of your platform.
And I hope that you and Robincan join me online.
But you know, IBD, once you'rediagnosed with it, it becomes
(03:04):
like a part of you.
So you're always looking tolearn from others and and and
hear their journeys and theirstories about like how do they
get through, you know, this thisjourney.
And so here we are.
SPEAKER_02 (03:17):
Can you tell us a little bit more about your
personal experiences with IBD?
Because we're gonna dive intoall the amazing stuff that you
have done.
But we always like to takeeverybody back to the beginning.
SPEAKER_00 (03:29):
Absolutely.
Thank you so much, Robin, forthat question.
So in 2017, I was diagnosed withit was Crohn's colitis.
I was first told it was Crohn'scolitis.
Then I was told that it wasCrohn's or it was colitis with
Crohn's involvement.
And then I was told that, youknow, I'm not quite sure.
I think it's Crohn's, you needto do a biopsy, I need to, you
(03:53):
know, to rule out colon cancer.
And so I'm like, oh my God, whatdo you mean, colon cancer?
Like I'm just like I'm freakingout.
Nobody could give me a directdiagnosis until I got to the
sixth doctor.
Prior to getting the rightdiagnosis in 2010 and 2011, I
was pregnant and I lost twodaughters.
Nobody could tell me why.
(04:13):
They just said my body rejectedthe baby, but not knowing then I
had high inflammation markers.
And so it wasn't until I got tomy GI doctor now, the sixth
doctor, where he looked at myrecords and was like, Hey, did
you notice that your ESR and CRPCRP numbers were high?
They were elevated.
And so that kind of like thelight bulb went off.
(04:35):
Okay, maybe that's why my bodyrejected the baby because we had
some autoimmune going on there.
And so it was going through thatjourney where I and going
getting the different diagnoses,I was told that, hey, you know,
you got an option.
You want to be on one biologicor another biologic.
And so I was like, I don't wantto be on either one.
(04:56):
What is this?
Like, what is Crohn's disease?
How do I get information aboutthis?
Because I've never heard ofthis.
And so there was nothing.
I just get was given the optionto take two different types of
medication.
And so I was like, oh, well,before we even do that, let me
go and do some research.
And so I went down this rabbithole and it was just research
(05:16):
and it was just research, but itwasn't enough research for me to
make an informed decision aboutmy health and what was best for
me.
In the meantime, I started, Iwas told um by one doctor you
need to stay away from fast foodrestaurants and toilet paper.
So I did that.
I went on this like crazy diet.
(05:36):
I started doing keto, all ofthese diets, vegan, vegetarian,
is so much that I got down tolike 112 pounds.
And my GI doctor, I told myprimary, I was like, listen, you
gotta help me.
Something's wrong.
Like, I'm losing it.
Like, I don't I don't even weighenough.
Like, and so she was like, Ineed you to calm down, but we're
(05:58):
gonna get you some help.
You can live with this.
Let me refer you to a GI doctor.
And she did, and that's where Ifound my six, the sixth doctor.
And when I got there, I mean, mymom was like holding me up.
I could barely walk in thatdoctor's appointment.
And so he was like, Well, wherehe's like, I've been waiting on
you.
Where have you been?
And I was telling him about thislast doctor that I saw.
But she had me on these, shewanted me to start taking these
(06:20):
keto packets that you put inyour water.
Like, and so I pulled out mypurse and I dumped it on his
desk.
And he was like, What is that?
And I'm like, I don't know.
He was so angry.
He was like, I'm taking it fromhere.
He was like, Why would she giveyou that when you're already a
hunt?
You're malnourished.
Like, she can't see that.
(06:41):
And so he's like, Miss MissWynne, I promise you, if you
just trust me, I will help youget better.
And when I tell you this doctor,like I love him so much, he is
so amazing.
He did just that.
I'm actually overweight now.
Like, I gotta lose the weightbecause I've gained so much
weight.
And so when I go to myappointments now, it's like,
hey, doc, I know, I know thatscale says something bad, but he
(07:03):
was like, Look, I'm just so gladthat we're here.
You know, we can work on that.
But I'm saying all that to say Ididn't know.
I didn't know the questions toask.
I was so confused about thesebig words.
I didn't know what inflammatorybowel disease was.
I mean, I've heard of IBS, butIBD, that was something
different.
And I remember my cousins, Ihave two first cousins.
(07:26):
They were diagnosed when theywere young.
And so I just, I don't know.
I just, it was like a I blankedit out.
I didn't think about it.
But as of today, I have a cousinwho passed away last September
from Crohn's.
And so that really like openedup my mind to say, hey, like
this is gonna help me pushforward.
But I going through thisjourney, just to get back to
(07:46):
your question, Robin, goingthrough this journey of ups and
downs, not understanding whatquestions to ask through this
process.
I had insurance and I wasunderinsured, but I needed to
see this same doctor.
I'm like, I don't care what it'sgonna cost.
I need to stay with this doctorbecause he knows my condition.
And I didn't know I was goingthrough step therapy.
(08:07):
I didn't know that was what Iwas going through.
I didn't know that there was apatient assistance program, but
I was underinsured, so I had topay upwards of a thousand
dollars out of pocket for myinfusions in the beginning.
So I started getting infusions,and it wasn't until one of the
nurses at the doctor's officewas like, hey, listen, when you
go back there to the doctor, Ineed you to ask him for the
(08:27):
patient assistance programbecause you're the only patient
paying this kind of money out ofpocket.
And that's when the light bulbreally went off.
I was like, wait a minute,there's somebody else going
through this like me.
And they don't know to ask thequestions.
I never knew that there was apatient assistance program.
All I wanted to do, Robin andAlicia, it was feel better,
right?
And so it was there.
(08:48):
My mom, I was like, mom, I neverknew about this.
And I felt so like I fought it,I fought myself because I didn't
know the questions to ask, Ididn't know what to say.
And so here we are, not knowing.
So it's now 2020, and now I'mfinally getting some relief with
not worrying about do I pay mybills or do I pay for this
(09:09):
medication that I need to live?
Right.
And so that's where I was.
And I'm like, you know what?
We got to help somebody else.
We got to set up this IBDpatient navigator program.
And my mom was like, maybe youshould start a nonprofit or
something.
And I was like, I don't want todo that.
Like, I and my, I just wanted tohelp the people.
I just want to help the people.
And I'm like, well, who's gonnalisten to me talk about my
(09:30):
bowels?
Who's gonna listen to that?
Right.
But then one night I just Isaid, okay, I gotta do this.
Like, I gotta help those whocan't speak for themselves.
And specifically, like, Ibelieve that there should be
equality for all people, right?
But what I do know is in theblack and brown community, it's
because we have not had goodresults with providers and the
(09:54):
trust issue isn't there.
And it's not because we don'twant to trust providers, it's
just that providers aren'teducating us.
So there's a lack of educationin our community and access to
this education.
And so that was my journey.
Losing my daughters was reallydevastating because I fought
tooth and nail to try to figureout why this happened to me.
(10:17):
Because I already had two oldersons, and my pregnancies were
good with them.
So I just couldn't understandwhy this happened.
And so for years, I just was inthis depressed state of mind
because I felt like it wassomething that I did that I
didn't do.
And so what should have happenedis, and that's where maternal
health comes into play with IBD.
(10:40):
You know, some patients are toldthat they can't have kids when
you're on certain medicationswhen you have IBD and you're
pregnant, or you want toconceive a child.
And that's one of the thingsthat we want to tackle as well,
like maternal health and IBD,because women, as women, we go
through so much.
Going through this, not only didI lose the kids, but I went into
(11:01):
this depression, this depressedstate of mind, because I had
postpartum.
And then once I was diagnosedwith Crohn's, I went through
menopause.
So it pushed me into likemenopause.
And when I had when I had thelab work, my um labs were like
the the doctor was like, Hey,you don't have to worry about
another cycle for the rest ofyour life.
Like, you're fine.
I mean, I was happy because I'mnot gonna complain about that.
(11:24):
But I'm like, I'm young, youknow, I'm young.
She was like, but be carefulbecause you still may be able to
conceive a child.
So I'm like, oh my God.
So it was just those things likejust the unknown and the back
and forth.
And so that's how the StephanieA.
Wynn Foundation was founded andthe IBD patient navigator
program.
It was founded due to mynear-death experience with IBD,
(11:48):
going through the six differentdoctors, not knowing what
questions to ask, the barriersto healthcare.
Our goal is really to help thosewho are diagnosed with this
condition, help them navigatethe healthcare system
simplistically without theoverwhelm.
And so, even further, thatprompted me to write the book
Navigating IBD, a six-weekblueprint for better good
(12:09):
health.
SPEAKER_02 (12:10):
I mean, you know, I like to throw in my caller
commentary too.
Even after you've been livingwith this disease for, in my
case, 26 years, you still haveperiods of when you're starting
to flare again or something newcomes up that you haven't
experienced before, not knowingwhat to ask the doctor, not
knowing if you have the rightdoctor for the situation that
you're in, not knowing.
SPEAKER_01 (12:31):
So I feel like not knowing what you're experiencing
as your IBD or something else.
Or something completely,something else completely.
SPEAKER_02 (12:39):
We could go down, look, talking about hormones and
IBD is like my I could go downso many rabbit holes, get on the
soapbox.
I just anyway.
Anybody, if you're a researcherand you're listening, we need
more research about hormones andIBD.
Okay, thank you.
Stepping off of the soapbox withthe patient navigator program
that you have, is itpredominantly for those newly
(13:02):
diagnosed people, or do you feellike it could benefit people who
are just navigating newsymptoms, new experiences, new
anything?
Or is it really like this isyour insurance coverage?
This is the questions that youshould ask.
Is it like a blueprint when youfirst find out?
SPEAKER_00 (13:16):
So our IVD patient navigator program, it's
inclusive to all that are facingsystemic barriers to healthcare.
So even men, and we've justrecently found out that men have
issues with, you know, gettingthe questions asked or
understanding the treatmentbecause you know how men are,
they're prideful.
So they don't, they're not asopen to talk about this
(13:39):
condition.
And so sometimes they recluse.
And so what we do is we partnerwith GI doctors.
So our goal is to partner withthe GI doctors with our IBD
patient navigator program.
So when they come to theiroffice, they have a patient,
whether they are a referral orthey're getting a second
opinion, they can already haveIBD, Crohn's, or osidive
(14:01):
colitis, but they refer them toour program so that now we can
help them.
And then the patient is assigneda patient navigator.
And so what happens is we makesure that they have a primary
care doctor within the first 45days.
Because here's what I do know,Robin, is sometimes the patients
that come through our program,they don't have a pro, they
don't even have a healthcareteam.
(14:22):
They have a GI.
They went to the ER, they sawthe doctor there, they saw the
house GI doctor in the hospital,but they never followed up on
the GI referral.
So what's happening is they'reseeing this patient again in
three days because the patientisn't following up.
So now we have an issue now thatbecause the patient isn't
(14:43):
managing their condition well,because they don't know.
And so they think that thehospital, the emergency room, is
their primary care doctor.
So what our goal is really topartner with the emergency
rooms, you know, the localhospitals, regional and national
hospitals, and say, hey, if youhave a patient that comes
through there and they haveinflammatory bowel disease and
they're not quite sure, sendthem through our program so we
(15:05):
can educate them.
And so what we do is this umblueprint is it's going to
educate the patient.
So when they hear the terms ofbiologics, biosimilars,
biomarkers, Crohn's disease,inflammatory bowel disease, or
IBS or osteopolitis or remicadeor you know, jack inhibitor.
(15:27):
Do they do they know thedifference between the two?
In the book, we don't talk aboutyou should take this medication
over that medication, butthey're going to hear these
terms and they need tounderstand what the terms is.
Like Remicade is in flexomab andREMVOC is a Jack Inhibitor.
So you need to know the two.
There's a difference.
And so I didn't know that, but Iwas expected to know this.
(15:49):
But I didn't go to medicalschool.
So this is why I didn't want towaste any more time.
My goal was to, I'm going to getmy cert, get certified as a
patient, certified patientleader.
I need to get in these roomswith these doctors to let them
know, hey, this is our program.
So what we did, we created amonthly peer support group, not
just a support group where we'rejust, it's a pity party if
(16:12):
you're we're crying or we're,you know, depressed.
No, we're here to help you.
What's one issue or challengeyou're having right now in your
healthcare journey?
And we're gonna talk it out.
Let's hash it out and let's getyou some help and let's get you
some support.
We've had people from Londonjoin in on our support group.
And it's it's it's pretty much apeer support group because even
(16:35):
though these patients are goingthrough the ER or urgent care,
one thing I do know, Robin, isyou're going to need a
healthcare team.
And that should be a primarycare provider, GI doctor.
You may need a colon erectilesurgeon, you might, but you
definitely need a mental healththerapist that focuses on
chronic illness, right?
And a diet and nutritionist.
(16:56):
That's your team.
That's the base of your thebasics of having your healthcare
team.
And I think that if GI doctorsor primary doctors, if you're
referring out, these patientsneed those things so that they
can make better informeddecisions about their health and
be included in the shareddecision making.
And that's what me and Aliciawere talking about before we
started.
(17:16):
Like patients should be includedin the shared decision making
when it comes to their health.
What I'm seeing is that they'renot being included.
Doctors are making decisionswithout the patient being in the
room.
So if the patient is notprogressing in a positive way,
that's because they're not inthe room, right?
So that's the difference.
So we do see, you know, patientswho currently already have IBD,
(17:39):
and we see new patients who arerecently diagnosed with the
condition as well.
SPEAKER_02 (17:43):
Nice.
I would also argue that yourteam should include a pelvic
floor physical therapist.
SPEAKER_00 (17:49):
Yes.
SPEAKER_02 (17:49):
Whether you're a man or a woman, if you're going to
the bathroom that much, you yourpelvic floor is under duress.
SPEAKER_01 (17:56):
So I would argue that you need that as well.
Yeah, that's definitely hard tocome by, unfortunately.
That along with a therapistthat's trained in chronic
illnesses are tough, butdefinitely worth finding and
great to have patientnavigators, you know, IBD
patient navigators like yours tokind of help with those
referrals and help to be able tofind connect people to resources
that are there.
I'm curious, what like ifsomebody were interested in
(18:17):
becoming a patient navigator,IBD patient navigator, what's
the training like?
Do you have a training protocolthat you put people through?
SPEAKER_00 (18:24):
We train our patient IBD patient navigators.
They go through a four-weektraining.
At the end of the training, theyget certified, they get a
certificate of completion.
So now they're ready.
And we train them on patientadvocacy, but we also tailor it
to inflammatory bowel disease.
We take the navigating IBDportions of that, we turn into a
(18:44):
training opportunity because alot of um IBD patient
navigators, they may not haveheard of IEBD.
Or I've had nurses reach out tous and say, hey, we would love
to go through your training, butthey they've heard of Crohn's
disease, but they don't know howto support students in schools
who've been who's been diagnosedwith Crohn's disease.
So we're seeing a lot ofstudents, you know, they're not
(19:06):
being supported in school,public schools specifically,
because the nurses they haven'tbeen trained on yet.
SPEAKER_01 (19:12):
Yeah, that's really important.
And it's interesting to see thedifferent people that come to
you to get that training too,that you kind of go, okay,
there's another need.
Unfortunately, it feels likethere's just a lot of, I'm I
would imagine it's like puttingyour finger in a dam that's
starting to break.
You sort of, you know, you keeppoking holes.
Okay, so that's so that's verycool.
And I'm guessing there's a lotof like helping people connect
with resources about likepatient assistance programs and
(19:32):
support your support group andother opportunities.
That's really fantastic.
What a what a service to be ableto have somebody to kind of walk
you through.
So is most of this donevirtually, or does this like if
you happen to be in the samecity as your patient navigator,
would that person come to anappointment with you?
Or how does how does that kindof work?
SPEAKER_00 (19:48):
So usually we do the vert the training, the four-week
training is virtually onlinebecause I, you know, I'm we
respect everybody's time.
And so virtually we do it inperson now.
So we're located in the state ofFlorida.
So what we do is we're in theout of the Tampa Bay area.
So we'll do the four-weektraining, and then at the end of
the training, we all will meetup.
(20:09):
And so, so our goal is really totake this training not just
locally, but take it regionallyand then nationally to different
organizations.
So if if an organization wantedus to come and say, hey, we want
you to come and bring yourtraining to us where we could
train the providers on how tocommunicate with patients with
IBD uh in the black and browncommunity, we definitely can do
(20:32):
that.
So, yeah, so that's a portion,another aspect of our IBD
patient navigator uh program aswell.
SPEAKER_01 (20:39):
I would love to circle back to your book because
anybody who takes the time andenergy and effort to actually
write a book is always somebodythat I I sort of admire and
marvel at because I don't havethe patience nor perhaps the
capacity.
So tell me about it.
Sounds like a lot of this waslike I have to actually write
this down and make it availableto people, but what prompted you
to write the book?
And then could you give us alittle bit of a sneak peek about
(21:01):
what's in it?
SPEAKER_00 (21:02):
What prompted me to write?
This is actually my third book.
So I'm an author by that'sthat's my thing.
I love to write.
Yes, but this one, this book,and in the beginning, I wanted
to just write about my storygoing through IB, the way I was
treated.
And then so it wasn't until Iwent to a patient advocacy
training last October in DC, andI noticed that they were asking
(21:26):
questions that patients didn'tcouldn't answer.
And so that's when the lightbulb went off.
I'm like, oh, this is not gonnabe it's it's about me, but it's
this is bigger than me.
Like, this is to help the actualpatient understand.
Like, do you know your numbers?
Do you know when you go get alab?
If this doctor is ordering allthese labs, do you know what
your iron levels are?
(21:46):
Do you know what your ESRmarkers are?
Do you know what your CRP levelsare?
So in the book, I break downwhat those terms mean.
We hear these acronyms all thetime in the medical and the
healthcare industry.
But what does that really mean?
And so what we did, what I didwas I'm like, okay, I need to
put this in a format.
It's a six-week blueprint.
(22:07):
So let's just say in six weeks,it may take you six weeks to see
a GI doctor, depending on howsevere you are.
So in that six-week time, youhave this blueprint.
We could talk about thediagnosis in the beginning.
And so you write down, okay,what medications are you on?
So you can write those down.
So when you go and see thisdoctor, or maybe you're getting
(22:28):
a second opinion, you canprovide him with the symptoms.
Because sometimes we can'tremember how we felt yesterday.
I mean, how I felt an hour ago,I mean, I was in the bed because
I didn't have I was tight,right?
But we can't remember some of uscan't because we have brain
fogs, right?
And so that's one of the thingswe have a meal tracker inside of
the book.
(22:49):
So you could track your meal.
So if you ate something that dayand it didn't agree with you,
how did you feel?
What was it that you ate, right?
What is the medication you'retaking?
How often do you have to takethe medication?
And so, what was the symptoms asa result for taking that
medication?
So now when you go into thedoctor's office, you can refer
back to this blueprint and say,hey, on such and such date, I
(23:11):
took this medicine.
This is how I felt, right?
Another thing in the in theguide, too, is I put together
questions that patients shouldask themselves, like, How did
you feel today?
How did you feel when you werediagnosed with this condition?
These are reflection questions.
And the reason why I asked thesequestions, because nobody asked
me these questions.
Nobody asked me how I felt.
(23:31):
I couldn't explain to my familymembers how I was feeling
because I didn't know how toexplain it.
All I know is my stomach hurt.
But I do know this.
If Robin goes to the doctor andsays, hey, doc, I have cramping
in my stomach, I have theurgency to go to the bathroom.
Uh, when I go, there's blood inthe stool.
But for me, I was so ashamed andembarrassed, my stomach hurts.
(23:54):
That's all I could tell you.
That's because I didn't, I wasjust so overwhelmed with so
much, like I didn't know whatwas going on with my body.
So I put these reflectionquestions after each chapter so
that they can look at, go backand reflect.
Okay, this week I'm gonna focuson this.
So I each week I give them asong of the week and I give them
a word of the week inaffirmations because when your
(24:17):
hormones are out of whack andyou're going through a bad
flare, you can't stand this.
I couldn't stand this the soundof anything like music, the door
opening, somebody blow theirhorn.
Like it really bothered me.
Like sound was it was reallyhorrible.
It was, I just can't evenexplain it.
But what I did was I'm like,okay, this is going to help this
(24:38):
person get through the week,this song.
And I created songs based off ofthe title of the chapter.
Now, I also talked about whatclinical trials are because
nobody told me that I that wasan option for me.
I was never told that a clinicaltrial was an option for me, that
I even qualify for a clinicaltrial.
(24:58):
And so I think sometimes in theblack and brown community,
because of the Tuskegeeexperiment and even other
things, we weren't explained orwe didn't understand when it
comes to these chronicillnesses.
We don't, we don't know whatthey really are and what are the
causes, so that we can here wego back to that decision making,
so that we can make a decisionif we want to partake in this
(25:20):
research.
And so, what I do know is thatthe medication, I failed a lot
of medication, and that'sbecause black and brown people
are not showing up in theseclinical research opportunities,
and and we got to change that ahundred percent.
Please, yes, we have to changethat.
And so I wanted to put that inthere because so often things
(25:43):
aren't communicated effectively,and so I wanted to put that to
rest so that they know, like,listen, you have options.
And I wanted patients to know,like, you have to ask the
question, Doc, what is myoptions with this condition?
Do I have access to clinicaltrials?
Do I have access?
What are my options?
I also put in there, and a lotof people don't like to talk
(26:04):
about this because this wasbrought up a lot every time I
went to an appointment.
Hey, do you have an advanceddirective?
Do you have a power of attorney?
Do you have these tools inplace?
Do you have a will?
And I was in the process ofgetting things together, but you
know, I put it out because I waslike, okay, I got time.
I'm young.
You know, I'm young.
But you never prepare for achronic illness.
(26:25):
And so what I did, I put a I putthat as a template in the back
of the book so that people canhave that so that they can, you
got to take care of yourbusiness.
Who is the person that's gonnamake the best decision when it
comes to your health care ifyou're not in a position to make
this decision?
And so that plus some is what'sin the book.
(26:46):
And it's really it's a greatread.
I mean, we talk about like foodsyou should stay away from when
you're going through a flare,put herbs and spices in there.
I know sometimes we want to, asyou know, IBD survivors, we want
to eat what we want to eat.
And sometimes are you gonna eatthat and suffer the
consequences, or you just it'sokay.
I'm I'm good.
(27:07):
You know, I I love gourmet foodat one point in my life.
And I was like Robin with thefancy glass.
I love my red wine, but at somepoint you gotta say no.
If if it's gonna cause me to beman down for the next week or
two, uh-uh, uh-uh.
I'll pass.
I'll keep drinking my water withhydration tablets.
(27:29):
So yeah.
SPEAKER_01 (27:30):
That's cool.
It sounds really informative.
And I and I love that youtouched on some of that stuff
that is a lot of people don't,you know, like talking about
advanced directives, talkingabout, you know, kind of
healthcare legal healthcarechoices.
Because I think, I mean, a lotof people don't even understand
what they are.
Like, what is an advanceddirective?
Like, what exactly does that do?
What's a medical power ofattorney?
How does that work?
You know, so I think it's reallyimportant to share that
(27:51):
information with folks justbecause there's it's just like
nobody knows about it.
And then all of a sudden youwere faced with needing it and
then it's not there, and youknow, you don't want it so that
your wishes are not honored,right?
No matter what it is.
So I think it's super important.
I'm curious, what's been theresponse to your book so far?
How long has it been out andwhat feedback are you getting
from people?
SPEAKER_00 (28:08):
So my book came out, it was launched on my birthday,
March 16th of this year.
I mean, I've gotten so manypeople who ordered the book.
Our goal is really to take thisbook.
We want doctors when theydiagnose their patients with
this condition, that they givethem this guy.
Because it's one thing todiagnose someone with something
(28:29):
and you give them a pamphlet.
Okay, that's great.
But if you give them the like ablueprint, it's like a journal,
if you will.
They can they'll hold on to thatand they will learn about this
condition.
Yes, our are medicationschanging, yes.
But those are I know that theyneed to know the basics of what
is inflammatory bowel disease?
(28:50):
What does that mean?
What is Crohn's disease?
What is oserative colitis?
What does it mean when your ESRis elevated or you're anemic?
You're gonna hear biomarkers,and so that's no more than labs.
What does your lab say aboutyou?
You know, and so we really haveto get patients educated on how
(29:12):
to advocate for themselveswithout overwhelming them.
And so that's what this book isgonna do is just give it to them
in simple terms.
So when they go to the doctor,hey, hey, doc, my lab says this,
because what I was doing is noteven looking at my lab lab
results.
And so I was like, one day thelight bulb went off, and I said,
Let me look at these numbersbecause something just isn't
(29:35):
right.
Like, I'm not gonna allow thesedoctors to keep telling me
something without beinginformed.
So you can't make a decision ifyou don't understand what the
numbers are saying on your labreport, you know, because they
may offer you something, theymay want you to get iron
infusions, but your iron may beoff just one half of a point,
meaning that you don't need togo and get this infusion.
(29:57):
It could be just maybe you justwere.
Off that day, you know.
So that's one of the reasonswhy.
One of the chapters is do youknow your numbers?
Because so many people.
SPEAKER_02 (30:08):
I obsessively look at my labs and I personally use
it as a way to know if I'm goingdownhill.
And I say that with therecognition that I've said on
the show many times that my bodyis a liar.
And so sometimes everythinglooks good until all of a sudden
it doesn't.
But sometimes, especially withmy iron, I am anemic.
I can see, like, hey, doc, myiron has been gradually going
(30:32):
down every time.
Let's take a look at it.
Even though it's still in theclear, it has been decreasing.
So I've used that a couple oftimes, especially if I start to
get symptomatic.
Like anemia has symptoms.
And so I start to getsymptomatic.
So I love that you are teachingpeople to look at their labs,
know what their numbers are.
Look at your labs when you'refeeling great.
(30:52):
So you know what they should befor you when you're feeling
great.
And then that way you know, evenif it's still in normal range,
if it's not normal for you, youcould still be experiencing some
kind of symptoms.
So know your numbers.
SPEAKER_00 (31:07):
And you know, and then to add to that, so one of
my numbers, I'm just gonna saythis for those that are
listening, my GFR, which is mykidney function, has been off.
Sometimes it's high, sometimesit gets, you know, I question
it.
So what I did, I'm like, listen,you're not going to wait a year
to tell me we have a problem.
(31:28):
So what I did, I looked at mynumbers, and I even went back
like a year ago and said, Hey,okay, it was this number.
So what do I need to do?
And so it was more of aconversation.
I went to a kidney doctor.
Hey, listen, this number isthis.
I need to get this up.
And he was like, Listen, youjust dehydrated.
You drink more water, but youneed a little help.
You don't need to just drinkplain water, you need to hydrate
(31:50):
yourself.
And so that's one of the things,like just like you said, I
wasn't symptomatic, but I couldtell that something's going on,
and I need to get, and usuallyyou could tell, like in your
like your urine or something,you could tell like something's
off, but yeah.
SPEAKER_01 (32:06):
I really like that you're like explaining symptoms
to people too, because I think alot of people just assume
inflammatory bowel diseasepooping, right?
Diarrhea.
And there are so many othersymptoms that could be out
there, like brain fog and someof these other things.
And so it's hard to tell thedoctor what your symptoms are
when you don't know if it's asymptom of your inflammatory
bowel disease.
So I think it's really cool thatyou're giving people a place to
(32:27):
like, here's what you could beexperiencing.
Make sure you're going andtalking to your doctor about it,
because that might mean thatthings are treated differently.
And so I think that's that's areally important thing.
It's the other thing I reallylike is that, you know, it's
really overwhelming to getdiagnosed with anything.
And then, you know, you get thislabel dropped on you, and then
you kind of go, holy cow, andthen you go do a bunch of
research, and then you'recompletely overwhelmed.
So it's nice to say that you'rebreaking it down into like this
(32:49):
week you're only going to focuson this thing.
That's all you're gonna look at.
You're gonna listen to the song,you're gonna do this
affirmation, you're gonna thinkabout this thing, and then you
walk away, you know, and thenyou the next week you do
something else.
And so I think it's helpingpeople digest it and not get
completely overwhelmed and justkind of throw their book away
and then say, I'll deal withthat later, and then until they
get sick, and then they end uphaving to kind of go back to it.
(33:09):
So I think I really like that.
I think that's a really smartmove.
SPEAKER_02 (33:11):
Yes.
SPEAKER_01 (33:12):
I'd love to talk about clinical trials, and this
is so fun.
We love Robin and I are biggeeks, basically is how it goes.
In addition to do the patientnavigation and having this
really grass, this really greatresource in this book and doing
support.
You also have educationalsessions that you do for
patients and really to again doactual training with patients
either directly in a room orsort of virtually to provide
(33:32):
these types of you know, talksand resources and educational
opportunities.
Like you said, there's there'shistory behind you know, some
mistrust, founded mistrust ofthe medical community.
What do people say aboutclinical trials?
Like when in the black and browncommunity, when like when you're
talking about this, what are thequestions they have?
What are maybe some barriersthat sort of keep them from
maybe investigating this orreally feeling comfortable
(33:54):
participating in a clinicaltrial?
SPEAKER_00 (33:56):
So, one of the questions that we get when we
get patients that come throughour patient navigator program,
they don't know that that's anoption for them.
Clinical trials is an optionone, right?
They don't have access to aclinical trial or their provider
has not given them that as anoption to participate in
clinical trial.
So, for example, for me, becauseI was failing so many
(34:19):
medications, that came up in aconversation with my GI doctor.
Hey, you know, we need to lookinto getting you, see if you
could possibly get into aclinical trial.
Okay, but is that an option forme?
Or we're just having aconversation about it, right?
That's a difference.
It's a difference than having aconversation and then knowing if
I do if I qualify too, is we'vehad people that went through a
(34:42):
clinical trial, they've hypedthem up for the clinical trial,
they've gone through get to thedoor, and now they don't
qualify, right?
So that's a that's an issue too.
So we have knowing that it'saccessible to us, two not being
qualified for the clinicaltrial, and three, just really
understanding what a clinicaltrial.
I think they need to change theterm, it needs to be clinical
(35:05):
research because that's reallywhat it is.
And the questions we get is if Igo through this clinical trial,
what happens at the end of thetrial?
Do they just like kick me to thecurb or am I do I have a
follow-up?
And that is issues that we needto address.
And so what we've done is we'repartnering with Moffat Cancer
(35:26):
Center to talk about thecorrelation with IBD and
colorectal cancer, if it's notmanaged, how that could be an
issue, because so many youngeradults are now being diagnosed
with colorectal cancer in theblack community, and it's like
rampant, and the numbers arejust the numbers that they're
diagnosing is not even hittingthe mark, like it's higher than
(35:49):
that.
And so our goal is really toeven with our educational
series, our lunch and learns,our goal is really to educate
patients on that too.
Like, what do you really knowwhat a clinical trial is?
Do you know how that affectsyour health?
Because let's talk about it.
We know that the medication isbased upon a white European male
(36:11):
when you they look at thesemedications.
So black and brown people aren'tshowing up for the trial,
they're not there, and so that'swhy you have so many black and
brown patients that are failingbecause they're not showing up.
So our DNA is totally differentthan a white European male.
And so what works for him maynot work for Stephanie Wynn, may
(36:32):
not work for Robin or Alicia.
But we need to get, we need tobe clear that we can participate
in these spaces and we're notpushed away, if you will, we're
given the opportunity as the40-year-old European male to
partake in this clinical trial.
SPEAKER_02 (36:50):
Do you talk about the different ways that you can
participate?
Because sometimes it's justmaking your labs and like tissue
collection available withoutactually having to go to be
monitored, you know, try aspecific medication.
Sometimes it's just going so faras to say, yes, you can use my
labs, you can use my markers,you can take a tissue sample,
(37:12):
and that can be used in clinicalresearch.
Because I feel like that's aneasier entry point, maybe.
SPEAKER_00 (37:19):
Exactly.
Yes.
I know that there are, I've beenseeing on social media is coming
down my timeline of UC Crohn'sand IBD with high blood pressure
in the in a trial that's goingon now with one company.
And like you're right.
And that was one of my questionsbecause we've partnered with a
local cancer research hospitalhere in Tampa that provides that
(37:44):
research.
And so our goal is to do that.
Like if it's just based on weget so many people in the black
and brown community to, like yousaid, use their tissue, use
their labs, that then it's notas like an inconvenience.
Because when you talk about theclinic going through the
clinical research, okay, do theyeven have transportation to
participate?
(38:04):
You know, because there is goingto be a requirement from the
patient to show up, and youknow, maybe it's every week, and
maybe it's every two days, maybeit's every other day.
And can they meet that need andcome back?
Do they have a car?
They may not even have a car.
You know, we had a patient thathe was diagnosed with Crohn's
disease.
He was referred to our IBDpatient navigator program.
(38:28):
He was unhoused, but theyprescribed him a medication that
required refrigeration.
But had the provider askedquestions on the intake, they
would have known that he didn'thave this.
This goes back to the socialdeterminants of health.
He would have known that, hey,we can refrigerate it here, you
can come here and make it mucheasier for the patient.
So again, our goal is really,like you said, to make it
(38:50):
seamless for the patient to showup.
That was a good question, Robin.
And like we definitely want towanna see if that's an option
too to offer them.
SPEAKER_01 (38:58):
There's so many reasons why somebody may not be
like, you know, what clinicaltrials may not come up in
conversation.
It might be that there's justsort of assumption that you're
not interested.
It might be that they want totry the existing therapies
first.
There's just a lot of factors.
It's hard to kind of say, like,okay, well, this is exactly what
we can do to fix this.
But I love that you're coveringthat and I love it that you're
talking about it as a way tojust get people familiar and get
(39:18):
them to start asking thequestions of their provider to
say, what is available to me?
What exactly?
Because there are some distinctbenefits to participating in a
clinical trial, like being ableto get free colonoscopies, being
able to get free drug, but thetrade-off is that then you
actually have to go get morecolonoscopies, right?
And you have more monitoringthat you have to do.
So there's like kind of sometrade-offs, but there it could
(39:39):
be a great option for somebodywho's maybe in between insurance
or is you know that kind ofthing.
So it's just such an importantpiece.
Plus, also, we're just gettingto the point where no other
medications are going to beavailable if we aren't doing
these things.
And so it's just a catch-22 thatwe're in.
SPEAKER_00 (39:54):
Yes, ma'am.
SPEAKER_02 (39:54):
Yes.
I mean, we already only have Ican't remember who we talked to.
It was either one of the Davidsthat we talked to was like 60%
efficacy right now.
And if you fail on that drug,then it goes down significantly
in percentage.
And so if the medications aren'tworking for you, the likelihood
that the next medication isgonna work is the percentages
are significantly reduced.
SPEAKER_00 (40:14):
So, what did my doctor?
So he said, so the firstmedication, so if we were
talking biologics, the firstbiologic, what did he say?
You're gonna get the best bangfor your book on that first one,
the second, you know, and afterthat, you know, is you you hope
and pray that it works out forthe best, right?
And so, who has the capacity todo that?
We need help now, right?
So, yeah.
SPEAKER_02 (40:35):
I mean, you mentioned that you wrote three
books.
What were the other two booksabout?
SPEAKER_00 (40:41):
My very first book was a business self-help book.
It's called Ready Set Go (40:45):
A Simple Guide to Establishing a
Successful Small Business.
And then I co-authored that withone of my coworkers at the time.
And then my second book was I'vepublished my book now.
What?
A simple guide to establish asuccessful author brand.
Because what I do know is thisif nobody knows that your book
(41:05):
exists, nobody's gonna buy whatyou're selling.
And oftentimes, authors they gothrough the editing process, the
publishing process.
But after the book is published,what do you do next?
And they've sold to theirfriends and family, and then
it's like their book just dies.
And you should be building thatauthor brand before your book is
published so people know there'ssomething to come.
(41:28):
And it's not just about theindividual book sale, but why
are you writing this book?
Are you really writing a book tomake a difference in the lives
of the people, or are you justdoing it for notoriety purposes?
And so the second book wasreally, these are just simple
guys.
My goal is to not overwhelm thereader, just to give it to them
(41:48):
simple and plain.
Then the third one came out, andnow you know I already knew how
to.
My first book, I went through apublisher and they didn't teach
about branding and marketing.
But because I've had businessesin the past, I knew that you
need to market your book, youneed to get out there.
So in the first book, I went ona nationwide book tour.
I went from the East Coast toMidwest to the West Coast.
(42:10):
But then, so this my third bookis really more of a teaching
tool, if you will, to go andteach to the mass of people so
that they can get the help thatthey need and get the support.
So even if patients who arediagnosed with IBD, they get a
pamphlet from their doctor orsome papers.
When you leave that doctor'soffice, it doesn't matter, you
(42:30):
can give them a stack of papers.
They're still trying tounderstand like what does this
doctor just say to me when theyget home?
SPEAKER_02 (42:36):
Even now, 25 years in, sometimes I'm like, What?
I'm gonna need you to repeatthat.
Like, I don't know.
Or and sometimes I walk out ofthe office and I'm like, I'll
just Google this when I gethome.
And then they hate to see mecoming back in the patient
portal with my questions.
Yeah.
SPEAKER_00 (42:52):
And so what I tell patients is listen, get your
three questions ready first.
Like when you go in, threequestions, make a list of 10,
but those three questions,that's it because you don't have
much time and you want to makesure that when you leave, it's a
good visit and you've gottenyour questions answered.
SPEAKER_02 (43:13):
Can I add something to that too?
SPEAKER_00 (43:15):
Sure.
SPEAKER_02 (43:16):
Maybe even ask if you can record the answers
because sometimes you have yourpriority questions that you want
to ask, and maybe the answer tothe first question you
overwhelms you.
Right.
And then that's it.
You're not remembering.
And I had to learn this the hardway.
I have not recorded, I haven'thad to yet, but when I was
really sick, like I had mydaughter brought her to a couple
(43:39):
of appointments with me so thatI had another person there who
could be my brain and my memory.
And also have had my husband dothat for me too when I was
really, really sick after thesurgery that I had in 2020.
But we don't always havesomebody that can go to the
doctor with us.
So I mean, I know not everybodydoes, but almost all of us have
a cell phone.
And so I would highly recommendthat you record what the doctor
(44:02):
says so that you can take itback and listen to it when you
have a clearer head.
SPEAKER_00 (44:07):
That is great.
That's great information.
SPEAKER_01 (44:09):
I'm curious, Stephanie, you know, hearing
about your books about, youknow, small businesses and
building your business andthings like that.
What did you take from yourother career into building this
nonprofit?
SPEAKER_00 (44:18):
One of the things that helped me, I'm gonna tell
you this.
This is so funny.
So I was gonna market my secondbook.
So I went to this marketingconference in Atlanta and I met
these two ladies fromPhiladelphia.
And we were talking, and she waslike, What's your name?
I said, Well, my name isStephanie.
I'm like, you know, we weretalking, I said, I really want
to start my nonprofitorganization.
(44:39):
And she said, Okay, so we had alunch break.
Well, when we came back, she waslike, Excuse me, ma'am, I looked
you up.
You have another book.
Why are you here?
And I'm like, Because I want tolearn how to market my book.
And navigating IBD wasn't even,it was written, but it wasn't
finalized.
I said, I want to start anonprofit, but I just been
(45:02):
teetering.
I didn't know, like, it's a lotof work, right?
And so one night during thisconference, I'll never forget,
like, I woke up in the middle ofthe night and my heart was
racing.
And it was like, I was helpingthese people, but they couldn't
hear me.
And I was telling them, yougotta do this.
Like I was telling them what todo.
And I woke up like my heart waspounding.
(45:22):
So I the next day I went and Ispoke with the lady.
She was like, Yeah, because youknow, I have experience with
funding a nonprofit.
I'm like, what?
She was like, Stephanie, youshould do that.
I'm looking at her like, thislady is crazy, right?
She was like, I'm serious.
What you're talking about?
Nobody's doing that.
Like, I mean, they're doing it,but not in our community like
(45:43):
this.
Like, you're really, you havesomething really good to talk
about.
So she was like, Look, I tellyou what, I'm gonna send you
some information and I need youto look at it.
So I was like, okay, and we havebecome the best of friends.
And it was there, like the thewebsite was already up.
I had already did some things,Alicia, to like behind the
scenes, but I didn't let nobodyknow because I was like, I had
(46:05):
to get out of my way because I'mlike, who's going to listen to
me talk about inflammatory boweldisease?
Nobody's gonna want to hearabout that.
And my mom was like, That's nottrue.
If you start, I promise you,people will listen.
I started doing blogs, postingthem on LinkedIn.
I was like, you know what?
Let me get active on LinkedIn.
(46:25):
And so the lady fromPhiladelphia was like, Look, you
need to know what socialdeterminants of health is.
Here, you need to get thisinformation, and I was like,
huh?
I'm like, oh, okay.
So I gotta go back and get sometraining.
And I love learning.
I'm all I love to learn, I loveto learn new things, but not
just learn new things, but trulyapply those to the community to
(46:46):
help the community out.
And so that's how the nonprofitstarted.
But I would say yes, because Istarted businesses before, my
very first business was an icecream shop here in South St.
Pete.
And I just always had thatentrepreneurship spirit in me to
help others.
And one thing I do know is eventhough it's a nonprofit, you
(47:06):
still have to run it as afor-profit, meaning you have to
market it, you have to brand it,people need to know that it's
there.
It's been a journey to say theleast.
And I'm just so thankful thatI'm we're able to, like our
board is able to just help getthe word out about what we're
doing because the people needyou to show up for them.
And so, yeah, that's how thenonprofit became uh to be.
SPEAKER_01 (47:29):
That's awesome.
You're in the right place at theright time.
Very fortuitous.
SPEAKER_02 (47:32):
Stephanie, thank you so much for coming on the show,
for being our guest and forreaching out through the
website.
So glad that you did.
Thank you so much.
And uh have to ask you the lastquestion, which is what is the
one thing you want the IBDcommunity to know?
SPEAKER_00 (47:46):
Absolutely.
So, the one thing that I wouldlike the IBD community to know
is that you're not alone.
You are not alone in thisjourney.
Your voice matters.
IBD does not have to define whoyou are.
Saying that with so muchcompassion and just to know that
you're not alone, even whenyou're in your darkest moments
or you're having the worst flareup, you are not alone.
(48:09):
You just have to breathe throughit.
You're gonna get through it.
Things are going to get betterwith the right tool support and
the right team.
You can definitely get throughthis and you can have a good
quality of life if you focus onwhat really matters, and that is
your health, because your healthis truly your wealth.
SPEAKER_01 (48:26):
That's fantastic.
I love that so much.
Stephanie, what an absolutepleasure to talk to you and to
learn more about your book andmore about your organization and
all of the many, many thingsthat you do.
Thank you for coming on theshow.
And again, thank you forreaching out to us.
And thanks everyone for else forlistening as well.
And cheers, guys.
SPEAKER_00 (48:44):
Cheers.
Hi, this is Stephanie Wynn.
I'm your IBE patient navigator.
And if you enjoyed this episode,please rate, review, and
subscribe and share with afriend.
Until next time, peace.
Hi, I'm Alicia, and I'm Robin, and you're listening
to Bow Moments, the podcastsharing real talk about the
realities of IBD.
This week we talked to StephanieA.
Wynn.
Stephanie is a podcaster, anauthor, and also founder of a
nonprofit organization, andshe's living with Crohn's
(00:20):
disease.
The Stephanie A.
Wynn Foundation has a mission toeliminate health disparities and
improve outcomes for the IBDcommunity through comprehensive
support services with priorityfor underserved populations.
She also wrote a book calledNavigating IBD, a six-week IBD
blueprint for better gut health.
She also has a podcast calledNavigating IBD with Stephanie A.
Wynn.
(00:40):
We had such a great conversationwith Stephanie, learning more
about her foundation and herlife as an author, and so much
more.
Cheers.
Hi, everybody.
SPEAKER_02 (00:51):
Welcome to Bowel Moments.
SPEAKER_01 (00:52):
This is Robin.
Hey everyone.
This is Alicia.
And we are so, so delighted tobe joined by Stephanie Wynn.
Stephanie, welcome to the show.
SPEAKER_00 (01:00):
Thank you.
Thank you so much, Robin andAlicia, for having me here this
evening.
SPEAKER_01 (01:04):
We are very excited to talk to you because there's
so many things that we havealready started talking about,
but that I can't wait to record.
But our first veryunprofessional question for you
is what are you drinking?
unknown (01:15):
Oh, good.
SPEAKER_00 (01:16):
I am drinking some Callaway Blue spring water with
a drop of non-hydration tablets.
Because you know, I can't justhave spring water without the
hydration.
So I need a little bit of helpthere.
SPEAKER_01 (01:30):
Smart.
Does it have a little bit offlavor to you?
I find that that's helpful forme.
SPEAKER_00 (01:33):
Actually, yes.
So it's the non-strawberrylemonade.
SPEAKER_01 (01:36):
Robin, what about you?
Yes.
SPEAKER_02 (01:38):
First of all, I'm on my little staycation.
So I'm drinking my bubbly waterout of a fancy glass because I
can.
I have cherry bubbly water witha little squirt of lime and also
my regular water becausehydration.
SPEAKER_01 (01:53):
I love that you're doing a staycation.
It's very, very well deserved,Robin.
I got real excited and I amdrinking a coffee Blavardier.
So I think I may have got itslightly wrong because I think
it's supposed to be sweetvermouth, but mine is like
vermouth rose.
So it's it tasted sweet.
So I went ahead with it.
So we'll see.
So cheers, guys.
Cheers.
Cheers.
Cheers.
(02:13):
Cheers.
Stephanie, next question for youis tell us your IBD story.
What brought you into ourcommunity?
SPEAKER_00 (02:18):
So I am a podcaster, but I also like to listen to
podcasters.
And two of my friends, Natalieand Tina, they are patient
advocates in the IBD space.
And so I was like, you knowwhat?
I would love to be on yourpodcast because I'm always for
those that are going throughthis journey of IBD, when you
hear, see, I know this soundsweird, but anything Bowel, I'm
(02:42):
just glued to it.
Like, because I want to know thedetails.
And it was a really good episodethat I came across.
And so I here I am.
I sent the email to see aboutbeing a part of your platform.
And I hope that you and Robincan join me online.
But you know, IBD, once you'rediagnosed with it, it becomes
(03:04):
like a part of you.
So you're always looking tolearn from others and and and
hear their journeys and theirstories about like how do they
get through, you know, this thisjourney.
And so here we are.
SPEAKER_02 (03:17):
Can you tell us a little bit more about your
personal experiences with IBD?
Because we're gonna dive intoall the amazing stuff that you
have done.
But we always like to takeeverybody back to the beginning.
SPEAKER_00 (03:29):
Absolutely.
Thank you so much, Robin, forthat question.
So in 2017, I was diagnosed withit was Crohn's colitis.
I was first told it was Crohn'scolitis.
Then I was told that it wasCrohn's or it was colitis with
Crohn's involvement.
And then I was told that, youknow, I'm not quite sure.
I think it's Crohn's, you needto do a biopsy, I need to, you
(03:53):
know, to rule out colon cancer.
And so I'm like, oh my God, whatdo you mean, colon cancer?
Like I'm just like I'm freakingout.
Nobody could give me a directdiagnosis until I got to the
sixth doctor.
Prior to getting the rightdiagnosis in 2010 and 2011, I
was pregnant and I lost twodaughters.
Nobody could tell me why.
(04:13):
They just said my body rejectedthe baby, but not knowing then I
had high inflammation markers.
And so it wasn't until I got tomy GI doctor now, the sixth
doctor, where he looked at myrecords and was like, Hey, did
you notice that your ESR and CRPCRP numbers were high?
They were elevated.
And so that kind of like thelight bulb went off.
(04:35):
Okay, maybe that's why my bodyrejected the baby because we had
some autoimmune going on there.
And so it was going through thatjourney where I and going
getting the different diagnoses,I was told that, hey, you know,
you got an option.
You want to be on one biologicor another biologic.
And so I was like, I don't wantto be on either one.
(04:56):
What is this?
Like, what is Crohn's disease?
How do I get information aboutthis?
Because I've never heard ofthis.
And so there was nothing.
I just get was given the optionto take two different types of
medication.
And so I was like, oh, well,before we even do that, let me
go and do some research.
And so I went down this rabbithole and it was just research
(05:16):
and it was just research, but itwasn't enough research for me to
make an informed decision aboutmy health and what was best for
me.
In the meantime, I started, Iwas told um by one doctor you
need to stay away from fast foodrestaurants and toilet paper.
So I did that.
I went on this like crazy diet.
(05:36):
I started doing keto, all ofthese diets, vegan, vegetarian,
is so much that I got down tolike 112 pounds.
And my GI doctor, I told myprimary, I was like, listen, you
gotta help me.
Something's wrong.
Like, I'm losing it.
Like, I don't I don't even weighenough.
Like, and so she was like, Ineed you to calm down, but we're
(05:58):
gonna get you some help.
You can live with this.
Let me refer you to a GI doctor.
And she did, and that's where Ifound my six, the sixth doctor.
And when I got there, I mean, mymom was like holding me up.
I could barely walk in thatdoctor's appointment.
And so he was like, Well, wherehe's like, I've been waiting on
you.
Where have you been?
And I was telling him about thislast doctor that I saw.
But she had me on these, shewanted me to start taking these
(06:20):
keto packets that you put inyour water.
Like, and so I pulled out mypurse and I dumped it on his
desk.
And he was like, What is that?
And I'm like, I don't know.
He was so angry.
He was like, I'm taking it fromhere.
He was like, Why would she giveyou that when you're already a
hunt?
You're malnourished.
Like, she can't see that.
(06:41):
And so he's like, Miss MissWynne, I promise you, if you
just trust me, I will help youget better.
And when I tell you this doctor,like I love him so much, he is
so amazing.
He did just that.
I'm actually overweight now.
Like, I gotta lose the weightbecause I've gained so much
weight.
And so when I go to myappointments now, it's like,
hey, doc, I know, I know thatscale says something bad, but he
(07:03):
was like, Look, I'm just so gladthat we're here.
You know, we can work on that.
But I'm saying all that to say Ididn't know.
I didn't know the questions toask.
I was so confused about thesebig words.
I didn't know what inflammatorybowel disease was.
I mean, I've heard of IBS, butIBD, that was something
different.
And I remember my cousins, Ihave two first cousins.
(07:26):
They were diagnosed when theywere young.
And so I just, I don't know.
I just, it was like a I blankedit out.
I didn't think about it.
But as of today, I have a cousinwho passed away last September
from Crohn's.
And so that really like openedup my mind to say, hey, like
this is gonna help me pushforward.
But I going through thisjourney, just to get back to
(07:46):
your question, Robin, goingthrough this journey of ups and
downs, not understanding whatquestions to ask through this
process.
I had insurance and I wasunderinsured, but I needed to
see this same doctor.
I'm like, I don't care what it'sgonna cost.
I need to stay with this doctorbecause he knows my condition.
And I didn't know I was goingthrough step therapy.
(08:07):
I didn't know that was what Iwas going through.
I didn't know that there was apatient assistance program, but
I was underinsured, so I had topay upwards of a thousand
dollars out of pocket for myinfusions in the beginning.
So I started getting infusions,and it wasn't until one of the
nurses at the doctor's officewas like, hey, listen, when you
go back there to the doctor, Ineed you to ask him for the
(08:27):
patient assistance programbecause you're the only patient
paying this kind of money out ofpocket.
And that's when the light bulbreally went off.
I was like, wait a minute,there's somebody else going
through this like me.
And they don't know to ask thequestions.
I never knew that there was apatient assistance program.
All I wanted to do, Robin andAlicia, it was feel better,
right?
And so it was there.
(08:48):
My mom, I was like, mom, I neverknew about this.
And I felt so like I fought it,I fought myself because I didn't
know the questions to ask, Ididn't know what to say.
And so here we are, not knowing.
So it's now 2020, and now I'mfinally getting some relief with
not worrying about do I pay mybills or do I pay for this
(09:09):
medication that I need to live?
Right.
And so that's where I was.
And I'm like, you know what?
We got to help somebody else.
We got to set up this IBDpatient navigator program.
And my mom was like, maybe youshould start a nonprofit or
something.
And I was like, I don't want todo that.
Like, I and my, I just wanted tohelp the people.
I just want to help the people.
And I'm like, well, who's gonnalisten to me talk about my
(09:30):
bowels?
Who's gonna listen to that?
Right.
But then one night I just Isaid, okay, I gotta do this.
Like, I gotta help those whocan't speak for themselves.
And specifically, like, Ibelieve that there should be
equality for all people, right?
But what I do know is in theblack and brown community, it's
because we have not had goodresults with providers and the
(09:54):
trust issue isn't there.
And it's not because we don'twant to trust providers, it's
just that providers aren'teducating us.
So there's a lack of educationin our community and access to
this education.
And so that was my journey.
Losing my daughters was reallydevastating because I fought
tooth and nail to try to figureout why this happened to me.
(10:17):
Because I already had two oldersons, and my pregnancies were
good with them.
So I just couldn't understandwhy this happened.
And so for years, I just was inthis depressed state of mind
because I felt like it wassomething that I did that I
didn't do.
And so what should have happenedis, and that's where maternal
health comes into play with IBD.
(10:40):
You know, some patients are toldthat they can't have kids when
you're on certain medicationswhen you have IBD and you're
pregnant, or you want toconceive a child.
And that's one of the thingsthat we want to tackle as well,
like maternal health and IBD,because women, as women, we go
through so much.
Going through this, not only didI lose the kids, but I went into
(11:01):
this depression, this depressedstate of mind, because I had
postpartum.
And then once I was diagnosedwith Crohn's, I went through
menopause.
So it pushed me into likemenopause.
And when I had when I had thelab work, my um labs were like
the the doctor was like, Hey,you don't have to worry about
another cycle for the rest ofyour life.
Like, you're fine.
I mean, I was happy because I'mnot gonna complain about that.
(11:24):
But I'm like, I'm young, youknow, I'm young.
She was like, but be carefulbecause you still may be able to
conceive a child.
So I'm like, oh my God.
So it was just those things likejust the unknown and the back
and forth.
And so that's how the StephanieA.
Wynn Foundation was founded andthe IBD patient navigator
program.
It was founded due to mynear-death experience with IBD,
(11:48):
going through the six differentdoctors, not knowing what
questions to ask, the barriersto healthcare.
Our goal is really to help thosewho are diagnosed with this
condition, help them navigatethe healthcare system
simplistically without theoverwhelm.
And so, even further, thatprompted me to write the book
Navigating IBD, a six-weekblueprint for better good
(12:09):
health.
SPEAKER_02 (12:10):
I mean, you know, I like to throw in my caller
commentary too.
Even after you've been livingwith this disease for, in my
case, 26 years, you still haveperiods of when you're starting
to flare again or something newcomes up that you haven't
experienced before, not knowingwhat to ask the doctor, not
knowing if you have the rightdoctor for the situation that
you're in, not knowing.
SPEAKER_01 (12:31):
So I feel like not knowing what you're experiencing
as your IBD or something else.
Or something completely,something else completely.
SPEAKER_02 (12:39):
We could go down, look, talking about hormones and
IBD is like my I could go downso many rabbit holes, get on the
soapbox.
I just anyway.
Anybody, if you're a researcherand you're listening, we need
more research about hormones andIBD.
Okay, thank you.
Stepping off of the soapbox withthe patient navigator program
that you have, is itpredominantly for those newly
(13:02):
diagnosed people, or do you feellike it could benefit people who
are just navigating newsymptoms, new experiences, new
anything?
Or is it really like this isyour insurance coverage?
This is the questions that youshould ask.
Is it like a blueprint when youfirst find out?
SPEAKER_00 (13:16):
So our IVD patient navigator program, it's
inclusive to all that are facingsystemic barriers to healthcare.
So even men, and we've justrecently found out that men have
issues with, you know, gettingthe questions asked or
understanding the treatmentbecause you know how men are,
they're prideful.
So they don't, they're not asopen to talk about this
(13:39):
condition.
And so sometimes they recluse.
And so what we do is we partnerwith GI doctors.
So our goal is to partner withthe GI doctors with our IBD
patient navigator program.
So when they come to theiroffice, they have a patient,
whether they are a referral orthey're getting a second
opinion, they can already haveIBD, Crohn's, or osidive
(14:01):
colitis, but they refer them toour program so that now we can
help them.
And then the patient is assigneda patient navigator.
And so what happens is we makesure that they have a primary
care doctor within the first 45days.
Because here's what I do know,Robin, is sometimes the patients
that come through our program,they don't have a pro, they
don't even have a healthcareteam.
(14:22):
They have a GI.
They went to the ER, they sawthe doctor there, they saw the
house GI doctor in the hospital,but they never followed up on
the GI referral.
So what's happening is they'reseeing this patient again in
three days because the patientisn't following up.
So now we have an issue now thatbecause the patient isn't
(14:43):
managing their condition well,because they don't know.
And so they think that thehospital, the emergency room, is
their primary care doctor.
So what our goal is really topartner with the emergency
rooms, you know, the localhospitals, regional and national
hospitals, and say, hey, if youhave a patient that comes
through there and they haveinflammatory bowel disease and
they're not quite sure, sendthem through our program so we
(15:05):
can educate them.
And so what we do is this umblueprint is it's going to
educate the patient.
So when they hear the terms ofbiologics, biosimilars,
biomarkers, Crohn's disease,inflammatory bowel disease, or
IBS or osteopolitis or remicadeor you know, jack inhibitor.
(15:27):
Do they do they know thedifference between the two?
In the book, we don't talk aboutyou should take this medication
over that medication, butthey're going to hear these
terms and they need tounderstand what the terms is.
Like Remicade is in flexomab andREMVOC is a Jack Inhibitor.
So you need to know the two.
There's a difference.
And so I didn't know that, but Iwas expected to know this.
(15:49):
But I didn't go to medicalschool.
So this is why I didn't want towaste any more time.
My goal was to, I'm going to getmy cert, get certified as a
patient, certified patientleader.
I need to get in these roomswith these doctors to let them
know, hey, this is our program.
So what we did, we created amonthly peer support group, not
just a support group where we'rejust, it's a pity party if
(16:12):
you're we're crying or we're,you know, depressed.
No, we're here to help you.
What's one issue or challengeyou're having right now in your
healthcare journey?
And we're gonna talk it out.
Let's hash it out and let's getyou some help and let's get you
some support.
We've had people from Londonjoin in on our support group.
And it's it's it's pretty much apeer support group because even
(16:35):
though these patients are goingthrough the ER or urgent care,
one thing I do know, Robin, isyou're going to need a
healthcare team.
And that should be a primarycare provider, GI doctor.
You may need a colon erectilesurgeon, you might, but you
definitely need a mental healththerapist that focuses on
chronic illness, right?
And a diet and nutritionist.
(16:56):
That's your team.
That's the base of your thebasics of having your healthcare
team.
And I think that if GI doctorsor primary doctors, if you're
referring out, these patientsneed those things so that they
can make better informeddecisions about their health and
be included in the shareddecision making.
And that's what me and Aliciawere talking about before we
started.
(17:16):
Like patients should be includedin the shared decision making
when it comes to their health.
What I'm seeing is that they'renot being included.
Doctors are making decisionswithout the patient being in the
room.
So if the patient is notprogressing in a positive way,
that's because they're not inthe room, right?
So that's the difference.
So we do see, you know, patientswho currently already have IBD,
(17:39):
and we see new patients who arerecently diagnosed with the
condition as well.
SPEAKER_02 (17:43):
Nice.
I would also argue that yourteam should include a pelvic
floor physical therapist.
SPEAKER_00 (17:49):
Yes.
SPEAKER_02 (17:49):
Whether you're a man or a woman, if you're going to
the bathroom that much, you yourpelvic floor is under duress.
SPEAKER_01 (17:56):
So I would argue that you need that as well.
Yeah, that's definitely hard tocome by, unfortunately.
That along with a therapistthat's trained in chronic
illnesses are tough, butdefinitely worth finding and
great to have patientnavigators, you know, IBD
patient navigators like yours tokind of help with those
referrals and help to be able tofind connect people to resources
that are there.
I'm curious, what like ifsomebody were interested in
(18:17):
becoming a patient navigator,IBD patient navigator, what's
the training like?
Do you have a training protocolthat you put people through?
SPEAKER_00 (18:24):
We train our patient IBD patient navigators.
They go through a four-weektraining.
At the end of the training, theyget certified, they get a
certificate of completion.
So now they're ready.
And we train them on patientadvocacy, but we also tailor it
to inflammatory bowel disease.
We take the navigating IBDportions of that, we turn into a
(18:44):
training opportunity because alot of um IBD patient
navigators, they may not haveheard of IEBD.
Or I've had nurses reach out tous and say, hey, we would love
to go through your training, butthey they've heard of Crohn's
disease, but they don't know howto support students in schools
who've been who's been diagnosedwith Crohn's disease.
So we're seeing a lot ofstudents, you know, they're not
(19:06):
being supported in school,public schools specifically,
because the nurses they haven'tbeen trained on yet.
SPEAKER_01 (19:12):
Yeah, that's really important.
And it's interesting to see thedifferent people that come to
you to get that training too,that you kind of go, okay,
there's another need.
Unfortunately, it feels likethere's just a lot of, I'm I
would imagine it's like puttingyour finger in a dam that's
starting to break.
You sort of, you know, you keeppoking holes.
Okay, so that's so that's verycool.
And I'm guessing there's a lotof like helping people connect
with resources about likepatient assistance programs and
(19:32):
support your support group andother opportunities.
That's really fantastic.
What a what a service to be ableto have somebody to kind of walk
you through.
So is most of this donevirtually, or does this like if
you happen to be in the samecity as your patient navigator,
would that person come to anappointment with you?
Or how does how does that kindof work?
SPEAKER_00 (19:48):
So usually we do the vert the training, the four-week
training is virtually onlinebecause I, you know, I'm we
respect everybody's time.
And so virtually we do it inperson now.
So we're located in the state ofFlorida.
So what we do is we're in theout of the Tampa Bay area.
So we'll do the four-weektraining, and then at the end of
the training, we all will meetup.
(20:09):
And so, so our goal is really totake this training not just
locally, but take it regionallyand then nationally to different
organizations.
So if if an organization wantedus to come and say, hey, we want
you to come and bring yourtraining to us where we could
train the providers on how tocommunicate with patients with
IBD uh in the black and browncommunity, we definitely can do
(20:32):
that.
So, yeah, so that's a portion,another aspect of our IBD
patient navigator uh program aswell.
SPEAKER_01 (20:39):
I would love to circle back to your book because
anybody who takes the time andenergy and effort to actually
write a book is always somebodythat I I sort of admire and
marvel at because I don't havethe patience nor perhaps the
capacity.
So tell me about it.
Sounds like a lot of this waslike I have to actually write
this down and make it availableto people, but what prompted you
to write the book?
And then could you give us alittle bit of a sneak peek about
(21:01):
what's in it?
SPEAKER_00 (21:02):
What prompted me to write?
This is actually my third book.
So I'm an author by that'sthat's my thing.
I love to write.
Yes, but this one, this book,and in the beginning, I wanted
to just write about my storygoing through IB, the way I was
treated.
And then so it wasn't until Iwent to a patient advocacy
training last October in DC, andI noticed that they were asking
(21:26):
questions that patients didn'tcouldn't answer.
And so that's when the lightbulb went off.
I'm like, oh, this is not gonnabe it's it's about me, but it's
this is bigger than me.
Like, this is to help the actualpatient understand.
Like, do you know your numbers?
Do you know when you go get alab?
If this doctor is ordering allthese labs, do you know what
your iron levels are?
(21:46):
Do you know what your ESRmarkers are?
Do you know what your CRP levelsare?
So in the book, I break downwhat those terms mean.
We hear these acronyms all thetime in the medical and the
healthcare industry.
But what does that really mean?
And so what we did, what I didwas I'm like, okay, I need to
put this in a format.
It's a six-week blueprint.
(22:07):
So let's just say in six weeks,it may take you six weeks to see
a GI doctor, depending on howsevere you are.
So in that six-week time, youhave this blueprint.
We could talk about thediagnosis in the beginning.
And so you write down, okay,what medications are you on?
So you can write those down.
So when you go and see thisdoctor, or maybe you're getting
(22:28):
a second opinion, you canprovide him with the symptoms.
Because sometimes we can'tremember how we felt yesterday.
I mean, how I felt an hour ago,I mean, I was in the bed because
I didn't have I was tight,right?
But we can't remember some of uscan't because we have brain
fogs, right?
And so that's one of the thingswe have a meal tracker inside of
the book.
(22:49):
So you could track your meal.
So if you ate something that dayand it didn't agree with you,
how did you feel?
What was it that you ate, right?
What is the medication you'retaking?
How often do you have to takethe medication?
And so, what was the symptoms asa result for taking that
medication?
So now when you go into thedoctor's office, you can refer
back to this blueprint and say,hey, on such and such date, I
(23:11):
took this medicine.
This is how I felt, right?
Another thing in the in theguide, too, is I put together
questions that patients shouldask themselves, like, How did
you feel today?
How did you feel when you werediagnosed with this condition?
These are reflection questions.
And the reason why I asked thesequestions, because nobody asked
me these questions.
Nobody asked me how I felt.
(23:31):
I couldn't explain to my familymembers how I was feeling
because I didn't know how toexplain it.
All I know is my stomach hurt.
But I do know this.
If Robin goes to the doctor andsays, hey, doc, I have cramping
in my stomach, I have theurgency to go to the bathroom.
Uh, when I go, there's blood inthe stool.
But for me, I was so ashamed andembarrassed, my stomach hurts.
(23:54):
That's all I could tell you.
That's because I didn't, I wasjust so overwhelmed with so
much, like I didn't know whatwas going on with my body.
So I put these reflectionquestions after each chapter so
that they can look at, go backand reflect.
Okay, this week I'm gonna focuson this.
So I each week I give them asong of the week and I give them
a word of the week inaffirmations because when your
(24:17):
hormones are out of whack andyou're going through a bad
flare, you can't stand this.
I couldn't stand this the soundof anything like music, the door
opening, somebody blow theirhorn.
Like it really bothered me.
Like sound was it was reallyhorrible.
It was, I just can't evenexplain it.
But what I did was I'm like,okay, this is going to help this
(24:38):
person get through the week,this song.
And I created songs based off ofthe title of the chapter.
Now, I also talked about whatclinical trials are because
nobody told me that I that wasan option for me.
I was never told that a clinicaltrial was an option for me, that
I even qualify for a clinicaltrial.
(24:58):
And so I think sometimes in theblack and brown community,
because of the Tuskegeeexperiment and even other
things, we weren't explained orwe didn't understand when it
comes to these chronicillnesses.
We don't, we don't know whatthey really are and what are the
causes, so that we can here wego back to that decision making,
so that we can make a decisionif we want to partake in this
(25:20):
research.
And so, what I do know is thatthe medication, I failed a lot
of medication, and that'sbecause black and brown people
are not showing up in theseclinical research opportunities,
and and we got to change that ahundred percent.
Please, yes, we have to changethat.
And so I wanted to put that inthere because so often things
(25:43):
aren't communicated effectively,and so I wanted to put that to
rest so that they know, like,listen, you have options.
And I wanted patients to know,like, you have to ask the
question, Doc, what is myoptions with this condition?
Do I have access to clinicaltrials?
Do I have access?
What are my options?
I also put in there, and a lotof people don't like to talk
(26:04):
about this because this wasbrought up a lot every time I
went to an appointment.
Hey, do you have an advanceddirective?
Do you have a power of attorney?
Do you have these tools inplace?
Do you have a will?
And I was in the process ofgetting things together, but you
know, I put it out because I waslike, okay, I got time.
I'm young.
You know, I'm young.
But you never prepare for achronic illness.
(26:25):
And so what I did, I put a I putthat as a template in the back
of the book so that people canhave that so that they can, you
got to take care of yourbusiness.
Who is the person that's gonnamake the best decision when it
comes to your health care ifyou're not in a position to make
this decision?
And so that plus some is what'sin the book.
(26:46):
And it's really it's a greatread.
I mean, we talk about like foodsyou should stay away from when
you're going through a flare,put herbs and spices in there.
I know sometimes we want to, asyou know, IBD survivors, we want
to eat what we want to eat.
And sometimes are you gonna eatthat and suffer the
consequences, or you just it'sokay.
I'm I'm good.
(27:07):
You know, I I love gourmet foodat one point in my life.
And I was like Robin with thefancy glass.
I love my red wine, but at somepoint you gotta say no.
If if it's gonna cause me to beman down for the next week or
two, uh-uh, uh-uh.
I'll pass.
I'll keep drinking my water withhydration tablets.
(27:29):
So yeah.
SPEAKER_01 (27:30):
That's cool.
It sounds really informative.
And I and I love that youtouched on some of that stuff
that is a lot of people don't,you know, like talking about
advanced directives, talkingabout, you know, kind of
healthcare legal healthcarechoices.
Because I think, I mean, a lotof people don't even understand
what they are.
Like, what is an advanceddirective?
Like, what exactly does that do?
What's a medical power ofattorney?
How does that work?
You know, so I think it's reallyimportant to share that
(27:51):
information with folks justbecause there's it's just like
nobody knows about it.
And then all of a sudden youwere faced with needing it and
then it's not there, and youknow, you don't want it so that
your wishes are not honored,right?
No matter what it is.
So I think it's super important.
I'm curious, what's been theresponse to your book so far?
How long has it been out andwhat feedback are you getting
from people?
SPEAKER_00 (28:08):
So my book came out, it was launched on my birthday,
March 16th of this year.
I mean, I've gotten so manypeople who ordered the book.
Our goal is really to take thisbook.
We want doctors when theydiagnose their patients with
this condition, that they givethem this guy.
Because it's one thing todiagnose someone with something
(28:29):
and you give them a pamphlet.
Okay, that's great.
But if you give them the like ablueprint, it's like a journal,
if you will.
They can they'll hold on to thatand they will learn about this
condition.
Yes, our are medicationschanging, yes.
But those are I know that theyneed to know the basics of what
is inflammatory bowel disease?
(28:50):
What does that mean?
What is Crohn's disease?
What is oserative colitis?
What does it mean when your ESRis elevated or you're anemic?
You're gonna hear biomarkers,and so that's no more than labs.
What does your lab say aboutyou?
You know, and so we really haveto get patients educated on how
(29:12):
to advocate for themselveswithout overwhelming them.
And so that's what this book isgonna do is just give it to them
in simple terms.
So when they go to the doctor,hey, hey, doc, my lab says this,
because what I was doing is noteven looking at my lab lab
results.
And so I was like, one day thelight bulb went off, and I said,
Let me look at these numbersbecause something just isn't
(29:35):
right.
Like, I'm not gonna allow thesedoctors to keep telling me
something without beinginformed.
So you can't make a decision ifyou don't understand what the
numbers are saying on your labreport, you know, because they
may offer you something, theymay want you to get iron
infusions, but your iron may beoff just one half of a point,
meaning that you don't need togo and get this infusion.
(29:57):
It could be just maybe you justwere.
Off that day, you know.
So that's one of the reasonswhy.
One of the chapters is do youknow your numbers?
Because so many people.
SPEAKER_02 (30:08):
I obsessively look at my labs and I personally use
it as a way to know if I'm goingdownhill.
And I say that with therecognition that I've said on
the show many times that my bodyis a liar.
And so sometimes everythinglooks good until all of a sudden
it doesn't.
But sometimes, especially withmy iron, I am anemic.
I can see, like, hey, doc, myiron has been gradually going
(30:32):
down every time.
Let's take a look at it.
Even though it's still in theclear, it has been decreasing.
So I've used that a couple oftimes, especially if I start to
get symptomatic.
Like anemia has symptoms.
And so I start to getsymptomatic.
So I love that you are teachingpeople to look at their labs,
know what their numbers are.
Look at your labs when you'refeeling great.
(30:52):
So you know what they should befor you when you're feeling
great.
And then that way you know, evenif it's still in normal range,
if it's not normal for you, youcould still be experiencing some
kind of symptoms.
So know your numbers.
SPEAKER_00 (31:07):
And you know, and then to add to that, so one of
my numbers, I'm just gonna saythis for those that are
listening, my GFR, which is mykidney function, has been off.
Sometimes it's high, sometimesit gets, you know, I question
it.
So what I did, I'm like, listen,you're not going to wait a year
to tell me we have a problem.
(31:28):
So what I did, I looked at mynumbers, and I even went back
like a year ago and said, Hey,okay, it was this number.
So what do I need to do?
And so it was more of aconversation.
I went to a kidney doctor.
Hey, listen, this number isthis.
I need to get this up.
And he was like, Listen, youjust dehydrated.
You drink more water, but youneed a little help.
You don't need to just drinkplain water, you need to hydrate
(31:50):
yourself.
And so that's one of the things,like just like you said, I
wasn't symptomatic, but I couldtell that something's going on,
and I need to get, and usuallyyou could tell, like in your
like your urine or something,you could tell like something's
off, but yeah.
SPEAKER_01 (32:06):
I really like that you're like explaining symptoms
to people too, because I think alot of people just assume
inflammatory bowel diseasepooping, right?
Diarrhea.
And there are so many othersymptoms that could be out
there, like brain fog and someof these other things.
And so it's hard to tell thedoctor what your symptoms are
when you don't know if it's asymptom of your inflammatory
bowel disease.
So I think it's really cool thatyou're giving people a place to
(32:27):
like, here's what you could beexperiencing.
Make sure you're going andtalking to your doctor about it,
because that might mean thatthings are treated differently.
And so I think that's that's areally important thing.
It's the other thing I reallylike is that, you know, it's
really overwhelming to getdiagnosed with anything.
And then, you know, you get thislabel dropped on you, and then
you kind of go, holy cow, andthen you go do a bunch of
research, and then you'recompletely overwhelmed.
So it's nice to say that you'rebreaking it down into like this
(32:49):
week you're only going to focuson this thing.
That's all you're gonna look at.
You're gonna listen to the song,you're gonna do this
affirmation, you're gonna thinkabout this thing, and then you
walk away, you know, and thenyou the next week you do
something else.
And so I think it's helpingpeople digest it and not get
completely overwhelmed and justkind of throw their book away
and then say, I'll deal withthat later, and then until they
get sick, and then they end uphaving to kind of go back to it.
(33:09):
So I think I really like that.
I think that's a really smartmove.
SPEAKER_02 (33:11):
Yes.
SPEAKER_01 (33:12):
I'd love to talk about clinical trials, and this
is so fun.
We love Robin and I are biggeeks, basically is how it goes.
In addition to do the patientnavigation and having this
really grass, this really greatresource in this book and doing
support.
You also have educationalsessions that you do for
patients and really to again doactual training with patients
either directly in a room orsort of virtually to provide
(33:32):
these types of you know, talksand resources and educational
opportunities.
Like you said, there's there'shistory behind you know, some
mistrust, founded mistrust ofthe medical community.
What do people say aboutclinical trials?
Like when in the black and browncommunity, when like when you're
talking about this, what are thequestions they have?
What are maybe some barriersthat sort of keep them from
maybe investigating this orreally feeling comfortable
(33:54):
participating in a clinicaltrial?
SPEAKER_00 (33:56):
So, one of the questions that we get when we
get patients that come throughour patient navigator program,
they don't know that that's anoption for them.
Clinical trials is an optionone, right?
They don't have access to aclinical trial or their provider
has not given them that as anoption to participate in
clinical trial.
So, for example, for me, becauseI was failing so many
(34:19):
medications, that came up in aconversation with my GI doctor.
Hey, you know, we need to lookinto getting you, see if you
could possibly get into aclinical trial.
Okay, but is that an option forme?
Or we're just having aconversation about it, right?
That's a difference.
It's a difference than having aconversation and then knowing if
I do if I qualify too, is we'vehad people that went through a
(34:42):
clinical trial, they've hypedthem up for the clinical trial,
they've gone through get to thedoor, and now they don't
qualify, right?
So that's a that's an issue too.
So we have knowing that it'saccessible to us, two not being
qualified for the clinicaltrial, and three, just really
understanding what a clinicaltrial.
I think they need to change theterm, it needs to be clinical
(35:05):
research because that's reallywhat it is.
And the questions we get is if Igo through this clinical trial,
what happens at the end of thetrial?
Do they just like kick me to thecurb or am I do I have a
follow-up?
And that is issues that we needto address.
And so what we've done is we'repartnering with Moffat Cancer
(35:26):
Center to talk about thecorrelation with IBD and
colorectal cancer, if it's notmanaged, how that could be an
issue, because so many youngeradults are now being diagnosed
with colorectal cancer in theblack community, and it's like
rampant, and the numbers arejust the numbers that they're
diagnosing is not even hittingthe mark, like it's higher than
(35:49):
that.
And so our goal is really toeven with our educational
series, our lunch and learns,our goal is really to educate
patients on that too.
Like, what do you really knowwhat a clinical trial is?
Do you know how that affectsyour health?
Because let's talk about it.
We know that the medication isbased upon a white European male
(36:11):
when you they look at thesemedications.
So black and brown people aren'tshowing up for the trial,
they're not there, and so that'swhy you have so many black and
brown patients that are failingbecause they're not showing up.
So our DNA is totally differentthan a white European male.
And so what works for him maynot work for Stephanie Wynn, may
(36:32):
not work for Robin or Alicia.
But we need to get, we need tobe clear that we can participate
in these spaces and we're notpushed away, if you will, we're
given the opportunity as the40-year-old European male to
partake in this clinical trial.
SPEAKER_02 (36:50):
Do you talk about the different ways that you can
participate?
Because sometimes it's justmaking your labs and like tissue
collection available withoutactually having to go to be
monitored, you know, try aspecific medication.
Sometimes it's just going so faras to say, yes, you can use my
labs, you can use my markers,you can take a tissue sample,
(37:12):
and that can be used in clinicalresearch.
Because I feel like that's aneasier entry point, maybe.
SPEAKER_00 (37:19):
Exactly.
Yes.
I know that there are, I've beenseeing on social media is coming
down my timeline of UC Crohn'sand IBD with high blood pressure
in the in a trial that's goingon now with one company.
And like you're right.
And that was one of my questionsbecause we've partnered with a
local cancer research hospitalhere in Tampa that provides that
(37:44):
research.
And so our goal is to do that.
Like if it's just based on weget so many people in the black
and brown community to, like yousaid, use their tissue, use
their labs, that then it's notas like an inconvenience.
Because when you talk about theclinic going through the
clinical research, okay, do theyeven have transportation to
participate?
(38:04):
You know, because there is goingto be a requirement from the
patient to show up, and youknow, maybe it's every week, and
maybe it's every two days, maybeit's every other day.
And can they meet that need andcome back?
Do they have a car?
They may not even have a car.
You know, we had a patient thathe was diagnosed with Crohn's
disease.
He was referred to our IBDpatient navigator program.
(38:28):
He was unhoused, but theyprescribed him a medication that
required refrigeration.
But had the provider askedquestions on the intake, they
would have known that he didn'thave this.
This goes back to the socialdeterminants of health.
He would have known that, hey,we can refrigerate it here, you
can come here and make it mucheasier for the patient.
So again, our goal is really,like you said, to make it
(38:50):
seamless for the patient to showup.
That was a good question, Robin.
And like we definitely want towanna see if that's an option
too to offer them.
SPEAKER_01 (38:58):
There's so many reasons why somebody may not be
like, you know, what clinicaltrials may not come up in
conversation.
It might be that there's justsort of assumption that you're
not interested.
It might be that they want totry the existing therapies
first.
There's just a lot of factors.
It's hard to kind of say, like,okay, well, this is exactly what
we can do to fix this.
But I love that you're coveringthat and I love it that you're
talking about it as a way tojust get people familiar and get
(39:18):
them to start asking thequestions of their provider to
say, what is available to me?
What exactly?
Because there are some distinctbenefits to participating in a
clinical trial, like being ableto get free colonoscopies, being
able to get free drug, but thetrade-off is that then you
actually have to go get morecolonoscopies, right?
And you have more monitoringthat you have to do.
So there's like kind of sometrade-offs, but there it could
(39:39):
be a great option for somebodywho's maybe in between insurance
or is you know that kind ofthing.
So it's just such an importantpiece.
Plus, also, we're just gettingto the point where no other
medications are going to beavailable if we aren't doing
these things.
And so it's just a catch-22 thatwe're in.
SPEAKER_00 (39:54):
Yes, ma'am.
SPEAKER_02 (39:54):
Yes.
I mean, we already only have Ican't remember who we talked to.
It was either one of the Davidsthat we talked to was like 60%
efficacy right now.
And if you fail on that drug,then it goes down significantly
in percentage.
And so if the medications aren'tworking for you, the likelihood
that the next medication isgonna work is the percentages
are significantly reduced.
SPEAKER_00 (40:14):
So, what did my doctor?
So he said, so the firstmedication, so if we were
talking biologics, the firstbiologic, what did he say?
You're gonna get the best bangfor your book on that first one,
the second, you know, and afterthat, you know, is you you hope
and pray that it works out forthe best, right?
And so, who has the capacity todo that?
We need help now, right?
So, yeah.
SPEAKER_02 (40:35):
I mean, you mentioned that you wrote three
books.
What were the other two booksabout?
SPEAKER_00 (40:41):
My very first book was a business self-help book.
It's called Ready Set Go (40:45):
A Simple Guide to Establishing a
Successful Small Business.
And then I co-authored that withone of my coworkers at the time.
And then my second book was I'vepublished my book now.
What?
A simple guide to establish asuccessful author brand.
Because what I do know is thisif nobody knows that your book
(41:05):
exists, nobody's gonna buy whatyou're selling.
And oftentimes, authors they gothrough the editing process, the
publishing process.
But after the book is published,what do you do next?
And they've sold to theirfriends and family, and then
it's like their book just dies.
And you should be building thatauthor brand before your book is
published so people know there'ssomething to come.
(41:28):
And it's not just about theindividual book sale, but why
are you writing this book?
Are you really writing a book tomake a difference in the lives
of the people, or are you justdoing it for notoriety purposes?
And so the second book wasreally, these are just simple
guys.
My goal is to not overwhelm thereader, just to give it to them
(41:48):
simple and plain.
Then the third one came out, andnow you know I already knew how
to.
My first book, I went through apublisher and they didn't teach
about branding and marketing.
But because I've had businessesin the past, I knew that you
need to market your book, youneed to get out there.
So in the first book, I went ona nationwide book tour.
I went from the East Coast toMidwest to the West Coast.
(42:10):
But then, so this my third bookis really more of a teaching
tool, if you will, to go andteach to the mass of people so
that they can get the help thatthey need and get the support.
So even if patients who arediagnosed with IBD, they get a
pamphlet from their doctor orsome papers.
When you leave that doctor'soffice, it doesn't matter, you
(42:30):
can give them a stack of papers.
They're still trying tounderstand like what does this
doctor just say to me when theyget home?
SPEAKER_02 (42:36):
Even now, 25 years in, sometimes I'm like, What?
I'm gonna need you to repeatthat.
Like, I don't know.
Or and sometimes I walk out ofthe office and I'm like, I'll
just Google this when I gethome.
And then they hate to see mecoming back in the patient
portal with my questions.
Yeah.
SPEAKER_00 (42:52):
And so what I tell patients is listen, get your
three questions ready first.
Like when you go in, threequestions, make a list of 10,
but those three questions,that's it because you don't have
much time and you want to makesure that when you leave, it's a
good visit and you've gottenyour questions answered.
SPEAKER_02 (43:13):
Can I add something to that too?
SPEAKER_00 (43:15):
Sure.
SPEAKER_02 (43:16):
Maybe even ask if you can record the answers
because sometimes you have yourpriority questions that you want
to ask, and maybe the answer tothe first question you
overwhelms you.
Right.
And then that's it.
You're not remembering.
And I had to learn this the hardway.
I have not recorded, I haven'thad to yet, but when I was
really sick, like I had mydaughter brought her to a couple
(43:39):
of appointments with me so thatI had another person there who
could be my brain and my memory.
And also have had my husband dothat for me too when I was
really, really sick after thesurgery that I had in 2020.
But we don't always havesomebody that can go to the
doctor with us.
So I mean, I know not everybodydoes, but almost all of us have
a cell phone.
And so I would highly recommendthat you record what the doctor
(44:02):
says so that you can take itback and listen to it when you
have a clearer head.
SPEAKER_00 (44:07):
That is great.
That's great information.
SPEAKER_01 (44:09):
I'm curious, Stephanie, you know, hearing
about your books about, youknow, small businesses and
building your business andthings like that.
What did you take from yourother career into building this
nonprofit?
SPEAKER_00 (44:18):
One of the things that helped me, I'm gonna tell
you this.
This is so funny.
So I was gonna market my secondbook.
So I went to this marketingconference in Atlanta and I met
these two ladies fromPhiladelphia.
And we were talking, and she waslike, What's your name?
I said, Well, my name isStephanie.
I'm like, you know, we weretalking, I said, I really want
to start my nonprofitorganization.
(44:39):
And she said, Okay, so we had alunch break.
Well, when we came back, she waslike, Excuse me, ma'am, I looked
you up.
You have another book.
Why are you here?
And I'm like, Because I want tolearn how to market my book.
And navigating IBD wasn't even,it was written, but it wasn't
finalized.
I said, I want to start anonprofit, but I just been
(45:02):
teetering.
I didn't know, like, it's a lotof work, right?
And so one night during thisconference, I'll never forget,
like, I woke up in the middle ofthe night and my heart was
racing.
And it was like, I was helpingthese people, but they couldn't
hear me.
And I was telling them, yougotta do this.
Like I was telling them what todo.
And I woke up like my heart waspounding.
(45:22):
So I the next day I went and Ispoke with the lady.
She was like, Yeah, because youknow, I have experience with
funding a nonprofit.
I'm like, what?
She was like, Stephanie, youshould do that.
I'm looking at her like, thislady is crazy, right?
She was like, I'm serious.
What you're talking about?
Nobody's doing that.
Like, I mean, they're doing it,but not in our community like
(45:43):
this.
Like, you're really, you havesomething really good to talk
about.
So she was like, Look, I tellyou what, I'm gonna send you
some information and I need youto look at it.
So I was like, okay, and we havebecome the best of friends.
And it was there, like the thewebsite was already up.
I had already did some things,Alicia, to like behind the
scenes, but I didn't let nobodyknow because I was like, I had
(46:05):
to get out of my way because I'mlike, who's going to listen to
me talk about inflammatory boweldisease?
Nobody's gonna want to hearabout that.
And my mom was like, That's nottrue.
If you start, I promise you,people will listen.
I started doing blogs, postingthem on LinkedIn.
I was like, you know what?
Let me get active on LinkedIn.
(46:25):
And so the lady fromPhiladelphia was like, Look, you
need to know what socialdeterminants of health is.
Here, you need to get thisinformation, and I was like,
huh?
I'm like, oh, okay.
So I gotta go back and get sometraining.
And I love learning.
I'm all I love to learn, I loveto learn new things, but not
just learn new things, but trulyapply those to the community to
(46:46):
help the community out.
And so that's how the nonprofitstarted.
But I would say yes, because Istarted businesses before, my
very first business was an icecream shop here in South St.
Pete.
And I just always had thatentrepreneurship spirit in me to
help others.
And one thing I do know is eventhough it's a nonprofit, you
(47:06):
still have to run it as afor-profit, meaning you have to
market it, you have to brand it,people need to know that it's
there.
It's been a journey to say theleast.
And I'm just so thankful thatI'm we're able to, like our
board is able to just help getthe word out about what we're
doing because the people needyou to show up for them.
And so, yeah, that's how thenonprofit became uh to be.
SPEAKER_01 (47:29):
That's awesome.
You're in the right place at theright time.
Very fortuitous.
SPEAKER_02 (47:32):
Stephanie, thank you so much for coming on the show,
for being our guest and forreaching out through the
website.
So glad that you did.
Thank you so much.
And uh have to ask you the lastquestion, which is what is the
one thing you want the IBDcommunity to know?
SPEAKER_00 (47:46):
Absolutely.
So, the one thing that I wouldlike the IBD community to know
is that you're not alone.
You are not alone in thisjourney.
Your voice matters.
IBD does not have to define whoyou are.
Saying that with so muchcompassion and just to know that
you're not alone, even whenyou're in your darkest moments
or you're having the worst flareup, you are not alone.
(48:09):
You just have to breathe throughit.
You're gonna get through it.
Things are going to get betterwith the right tool support and
the right team.
You can definitely get throughthis and you can have a good
quality of life if you focus onwhat really matters, and that is
your health, because your healthis truly your wealth.
SPEAKER_01 (48:26):
That's fantastic.
I love that so much.
Stephanie, what an absolutepleasure to talk to you and to
learn more about your book andmore about your organization and
all of the many, many thingsthat you do.
Thank you for coming on theshow.
And again, thank you forreaching out to us.
And thanks everyone for else forlistening as well.
And cheers, guys.
SPEAKER_00 (48:44):
Cheers.
Hi, this is Stephanie Wynn.
I'm your IBE patient navigator.
And if you enjoyed this episode,please rate, review, and
subscribe and share with afriend.
Until next time, peace.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Are You A Charlotte?
In 1997, actress Kristin Davis’ life was forever changed when she took on the role of Charlotte York in Sex and the City. As we watched Carrie, Samantha, Miranda and Charlotte navigate relationships in NYC, the show helped push once unacceptable conversation topics out of the shadows and altered the narrative around women and sex. We all saw ourselves in them as they searched for fulfillment in life, sex and friendships. Now, Kristin Davis wants to connect with you, the fans, and share untold stories and all the behind the scenes. Together, with Kristin and special guests, what will begin with Sex and the City will evolve into talks about themes that are still so relevant today. "Are you a Charlotte?" is much more than just rewatching this beloved show, it brings the past and the present together as we talk with heart, humor and of course some optimism.
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.