Finding the Balance - Honoring Veteran's Day With Stephanie Gish - About IBD

Episode Transcript
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Amber Tresca (00:05):
I'm Amber Tresca, and this is about IV D. I'm a
medical writer and patienteducator who lives with a J
pouch due to ulcerative colitis.It's my mission to educate
people living with Crohn'sdisease or ulcerative colitis
about their disease and to bringawareness to the patient
journey.
Welcome to Episode 161
IB D affects us for a lifetime,which means that we need
continuous medical care. Thisputs us at risk for poor

(00:27):
continuity of care, orfragmented care. A study from
the Veterans HealthAdministration of 20,000
veterans with IB D showed thatpoor continuity of care was
associated with worse outcomes.The researchers write and I
quote, patients with IV Drequire care by primary care
providers, gastroenterologistsand surgeons, but the
delineation of responsibility byphysician is often unclear. My

(00:51):
guest is Stephanie Gish, thehost of the Crohn's fitness food
podcast and author of Crohn'sfitness food and my rocky road
to health. Stephanie's journeyto getting a diagnosis and care
for Crohn's disease wasinterrupted repeatedly in the
early days of her symptoms, shewas serving in the army, she had
to advocate to get the medicalcare she needed, all while
trying to go through her life asif nothing were happening. She

(01:13):
learned many lessons along theway about managing Crohn's
disease, both with and withoutmedications, as well as how
mindset and acceptance areimportant parts of living with a
chronic illness.
Stephanie, welcome to about IBD.

Stephanie Gish (01:27):
thank you. It's a pleasure to be here. Thank you
for having me.

Oh, it is my pleasure. All right, Stephanie,
let's get started first of allby having you introduce yourself
to our audience.

I am Stephanie Gish. I have both Crohn's
disease and IGA nephropathy,which is a type of kidney
disease. I'm a voice actor slashaudiobook narrator, and I host
the Crohn's, Fitness, FoodPodcast.

Amazing. Thank you so much. You know, Stephanie,
I've been listening to your showfor a while, been, you know,
watching your Instagram, but Ithink that probably there's
parts also, when I read yourbook, I don't want to forget
that part. You don't want toforget about your book. So okay,
we'll get into that. But allthat to say is that you have had
quite a journey with yourCrohn's disease in a lot of

(02:12):
different ways. So I wonder ifyou would first start and just,
we're going to get a level sethere and let us know how you
were diagnosed, like, what wereyour symptoms like, and what
that whole process was for you?

Unknown (02:24):
Love to. So my symptoms actually started about 20 years
ago. I was in college. I think Iwas 22 at the time, back around
2003 and I noticed blood in mybowel movements. So immediately
I knew something wasn't right,and had assumed my colon was
bleeding, which, in hindsight,was a correct assumption, but

(02:49):
but at 22 I was living away frommy parents, I was both
embarrassed and I was also indenial about what was happening,
so I waited a few weeks before Idecided to do something about
it, and after a few weeks, Ifinally went into the college
health clinic to go see adoctor, and she did a very, very
brief visual exam and simplytold me that I had an anal

(03:13):
fissure, and I was fine.

So I took that information with me, and I held
on to that. But not long after,that's when I started having
like, the intense cramping andabdominal bloating that so many
of us are very familiar with.And my symptoms continued like
that for the next three years,because in the back of my head,
I just thought it's an analfissure. Time can go by and I'm

(03:40):
okay. And so that happened forabout three years.
Finally, the symptoms got reallybad. It was probably around
September of 2006 that I had myfirst really severe,
debilitating flare up and badenough that I couldn't leave the
house for about three months.And so after three months, I
finally went to the hospital. Iwaited that long because I

(04:04):
didn't think I could go. Icouldn't be in the car for 15
minutes without having anaccident, so I'd wait till I
could go 45 minutes so I couldmake it to the hospital.
And that was that was inDecember of 2006 when I went to
the ER because I didn't knowwhere else to go, and I was
pretty much dismissed. They gaveme antibiotics and told me to

(04:26):
follow up with my primary caredoctor, which I did, my primary
care doctor then referred me toa gastroenterologist, and the GI
doctor ordered a colonoscopy,but that wasn't scheduled for
until two months later.
So by the time I got thecolonoscopy, it had been six

(04:47):
months since the very beginningof like the severe stay at home
for three months flare up. Soafter we did the fun
colonoscopy, the doctor, he washesitant, so there was still
some. Some ulcerations, but hewas hesitant to give me a
lifelong diagnosis of a chroniccondition, even though he

(05:07):
suspected IBD.
So the plan was to do nothingtake Imodium when it diarrhea
got bad, and Tylenol when thepain was bad, and to basically
watch and wait and see whathappened, and to see how so I
was just waiting for the nextbad flare up, which because they
said, if it's IBD, it will flareup again. So it was watching,

(05:29):
wait, wait for a flare up. Andthat process took another three
years until I finally got adiagnosis in 2009

I have so many questions. I mean, it's like,
Okay, so first off, shediagnoses you with an anal
fissure. Like, do you think youactually had one?

Unknown (05:51):
I don't know. I have thought about that so many
times, and it's like, was thereor was it just like, I mean, it
was clearly blood from my colon,like, maybe, maybe I had a
bleeding colon and anal fissureto this day, I just, I don't
know.

Yeah, because it's, well, they can be very
painful, but it's kind ofpainful in a very particular
Because also, um, like, they can be troublesome
spot.

Yeah, and, and it wasn't, I mean, it was just,
I think that's why I couldignore it for so long, because
and take a long time to heal andstuff like that. But like, they
there was just blood in thetoilet. But, and other than the
like, the intense cramping painand the bloating pain like that,
was a different pain. It wasn'tan anal fissure type pain, so I
don't think...I don't thinkthere was one.

(06:44):
heal up, you know, if it's anacute thing sometimes, so it's
like, I don't know that'sreally, that's really wild. And
then the idea of not wanting togive you a diagnosis, do you
have any insight as to why thatwould be, because I really
don't, I really don't get it.

(07:06):
I don't either. I...it was, you know, that was
back in 2000 and what did I say,2007 when I seven? Yeah, 06-07,
when I had the colonoscopy. AndI don't know if it was just, you
know, almost 20 years ago, if itwas just more of a hesitation, I

(07:27):
don't, I don't know. I know fromtalking with a lot of people
like nowadays, it's like eventhe treatment is often like,
let's start right off withbiologics, or let's start off
with the big guns, because thefaster we can get this under
control and get this taken careof, the better that long term
healing and process is going tobe, as opposed to just, well, if

(07:51):
it's IBD, it'll be back. So it'slike, but knowing what I know
now, it's like if my secondflare would have been worse and
landed me in the hospital or forsurgery or an obstruction like
it could have been so much worsefor this. Let's wait. Take some
Imodium, but...

(08:11):
I can see watching and waitingfor certain things, I guess, but
maybe not for progressivedisease that really has the
potential to, like, changeeverything. I mean, you named a
bunch of the potentialintestinal complications, also
fistulas...
Yeah...

...which are miserable and so, yeah, it was
that's really wild to me. And inthat time, we had some
biologics. I don't have, like,an encyclopedic knowledge of
them. I know the first wasapproved in 1998 so they were
there, yeah, you know, they werein use, that they could have
been, you know, pulled out inyour case, or at least

(08:49):
something, I don't know, atleast something, oh my gosh.
It'sjust why. It's just wildthat, that it all went down that
way. Um, but had, did you knowanything about IBD prior
to...any...you had to have beenon the Google machine, right?

Unknown (09:05):
I was, I was on the Google machine for sure, prior
to my bleeding colon. I hadnever heard of Crohn's /
ulcerative colitis. IBD was notin my vocabulary.

But when I was dismissed and I knew my colon
was bleeding, I definitelyturned to the Google machine,
which was difficult when you'reat the school library computer,
but then you just got to getbold and and Google. So I
definitely learned a lot doingthat and but by the time I got
my diagnosis, I was pretty,pretty certain that that was

(09:38):
going to be the diagnosis,because it was a six year wait
from the first symptoms tofinally getting a diagnosis, so
I had a lot of time to researchand guess as to what was
happening.

Okay, I have to back up for a minute, though,
because part of your journeyhere is that you were in.
Military service. And again, Iforget everything, so I don't
have an encyclopedic knowledge,but that was before your
diagnosis, right?

Yes

Okay, and you originally had an injury that
you think maybe kind of startedyou on the path to all of this
that happened later with theintestinal problems. So could
you describe what happenedthere? I read it in your book,

Yeah, so I broke my foot in the Army. And it was
so...
actually I broke a bone in myfoot. It's a sesamoid bone. It's
on the bottom of your foot, andit's, it's a tiny little bone,
and I broke it, and no one knewit was broken.
So so at that time, my my mantrakind of became, "Put your head

(10:51):
down and drive on," and and thatwas my life raft. Not a good
one, but it was for the earlyyears in the Army trying to get
through that broken foot injury,and then I carried that mantra
into my IBD journey.
So the sesamoid bone, in somepeople, it can be a naturally

(11:13):
bipartite sesamoid, a naturaltwo piece bone. So for a long
time, the doctors just kind ofassumed that maybe I just had a
natural two piece bone. Mine wasnot it was broken, and it took
them two years.
So mind you, I was walkingaround with this broken bone
that felt like every time I tooka step, it felt like someone was

(11:33):
hitting my foot with asledgehammer, and it was
incredibly painful, and it tooktwo years. Finally, an
orthopedic surgeon did a bonescan, and that thing lit up like
a Christmas tree. So clearlysomething was happening. So they
removed the bone, they didsurgery, took the bone out, and
then at that point, I couldn'trun, I couldn't wear the
military boots, and so they dida medical board.

(11:56):
And all this time I was stillhaving I had started to have
that bleeding from my colon. Iwas having my Crohn's symptoms,
but that was kind of on the backburner because it was
embarrassing, and because thefoot pain was so intense that
that was like my focus. And sothey finally did after the

(12:20):
surgery, they did a medicalboard, which is when the Army
discharges you for medicalreasons.
And so it was really hard tohave both the Crohn's symptoms
So they did the medical board,and I was discharged from the
that I was embarrassed to talkabout and the foot issues that

(12:40):
people were just not evenbelieving was an issue. And I
didn't even want to go to sickcall. Like sick call is just
army. And so that kind of, thatwhole process of learning to

(13:09):
just grit my teeth and bear it,is that mindset of "Put your
like going to the medicalclinic, because I didn't want to
be the one made fun of. I didn'twant to be the one that couldn't
hold my own. And I did actuallyhave one lieutenant, which is

(13:30):
like the first officer rank inthe Army, so it's like the
head down and drive on." And Itook that into my IBD journey.
lowest on the totem pole, didactually publicly mock me one
time when I asked to go to sickcall.
And so, you know, when you'vegot all that kind of on your
shoulders in the back of yourhead, I've been made fun of when
I asked to go to sick call. Ididn't want to be a weak female

(13:50):
in the military. I didn't wantto fit any mold of not being
So during my time in the Army, Iwas, you know, as a female, as a
able to hack it. So I just putmy head down and drove on. And I
learned to smile through thepain.
And the mantra actually camebecause I picked up that mantra
when we were doing a I think itwas in ROTC time so early on,

(14:12):
and we were doing a 12 mile ruckmarch, and it was rainy, and it
was dreary, and so everyone waswet and miserable, and everybody
woman in the Army, I did notwant to fit into any
else was complaining. I was inso much pain, I couldn't
complain. Like I was just in somuch pain, all I could do was
literally put my head down. Andone of the cadre, one of the

(14:35):
instructors, had said, "Put yourhead down and drive on." That's
stereotypes. I did not want to,especially the bad stereotypes
how we do in the Army.
Like, stop complaining,everybody, it's raining and
we're marching, and that's whatwe're doing. So put your head
down and drive on. And that justwas burned into my memory.
That's kind of how I carriedthat with me for all those years
of put your head down, drive on.
So through the pain, I learnedto smile, and because I smiled,

(14:58):
that women shouldn't be there,or that women couldn't hold
people didn't believe that myfoot was broken because I walked
into the clinic and I smiled andsaid hello, and because I smiled
when I walked into thegastroenterologist office, and I
smiled and I said,Hello...people didn't believe
me. So all the time, all thetime, went on, and I learned to,

(15:18):
like many of us, I learned tosmile through the pain and hold
their own.
it in even more.

I understand what you're saying. And it brings up
a lot of ideas. And you wentinto it about not wanting,
wanting to present yourself insuch a way that you are, that
you are taken seriously, whichwe feel like we have to then put
our own needs by the wayside.
And quite frankly, it sounds asthough you were pretty much

(15:46):
toldthat, you know, you can't besick, you can't have a problem
here. And then on top of that,that you had a very, I don't
know how typical it is to breakthat bone or to have that bone
already be in two pieces thatthey wouldn't have recognized
it, but then you had, like, Imean, honestly, that's really a
weird thing. It is like thatthey couldn't, I mean, normally

(16:07):
you break your foot. You go, Imean, I've broken my foot many
times. You go...

Yeah.

...the fact that they're like, Well, you might
have this, um, benign anatomicalanomaly...

Yeah.

Or it could be broken, or we don't. We don't,
know, but in the meantime, justgo about your business.

Take some take some Tylenol,

...and just move it along. Move it along. Just
wild. I mean, I hate that foryou. I really, you know, and to
go so long without a diagnosisas well, even though you had a
colonoscopy is really prettybonkers, like it just should not
have gone down that way. So, Imean, honestly, I'm really glad

(16:47):
that you didn't have some kindof really serious thing happen
to you during that time.

I am too other than, other than staying at home
for three months of intensebloody diarrhea every 15
minutes.

Do you think of that now and think, How did I
ever like? How did that becomemy normal? How did that happen?

I do think that. And as I listen to other
people's stories, it's itfascinates me how much we can
think is normal, like, how muchwe can internalize and convince
ourselves that this is okay, I'mnot that bad. It's bad, but it's
not that bad. And it didn'thappen slowly. I mean, that

(17:34):
flare up came on, like, Iremember the second it started,
because I was working at home. Ihad just been, literally just
been discharged from the armythat September, and it was mid
September that the flare hit. SoI was in my home office. I was
going to start my new graphicdesign career, slash web design

(17:55):
career, working in my homeoffice. And the urgency hit, and
I bolted from my bedroom to thebathroom, which was like 15 feet
away, and I barely made it.There was and and that surprised
me, like I probably would havethought, how could you not
control your own bowels as anadult there? There was no

(18:17):
controlling us. If I wasn'tgoing to make it to the
bathroom, it was still comingout, but luckily, I made it,
because it was only 15 feetaway. But had I been like in an
office setting, or still in themilitary, I would have craft my
pants like not even a questionabout it, and and then I just
laid on the bathroom floor forthe next 24 hours, because it

(18:41):
hit just every 15 minutes andand I don't know why, at that
moment, it didn't seem moresevere to me, or if it was
honestly, I think I was just Iwas alone. So my ex husband, I
was married at the time, he wason a rotation away, so he was
gone for like four weeks. So Iwas home alone. I was living in

(19:03):
Texas, my parents, my family,were all back in Utah, so I just
kind of had no support system,like a support system that I
would have felt close enoughtalking to about my horrible
bloody diarrhea and bathroomissues. So I was just alone. And
I think when you're alone andyou feel like you don't have

(19:26):
anywhere to turn to you just andthen that mantra of put your
head down and drive on it wasthis, this mantra, this, I can
do this. I am determined. I canfight through it. I will get
through this, that kind ofmindset. And I think at that
time, I didn't expect it to goon for the next three months,

(19:48):
the next 20 years. And so youjust kind of, you deal with that
in the moment, and then thatmoment becomes 345, months, and
then all of a sudden it's. Justyour new normal. And it's like,
looking back, it's like, none ofthat was normal,

none of that. No, it becomes your life. And then I
get what you're saying about nothaving somebody right there who
looks, looks at you and says,No, we're not doing that. We're
going to the hospital. We'redoing what I'm doing. So you're
just kind of coping with ituntil, or I know I do this too.

(20:29):
You wait until it's convenientto cope with and then guess
what? That convenient time nevercomes. Yes. Yes. Up next, how a
specialist gas, let Stephanieinto questioning her diagnosis.

(20:57):
Okay, so Stephanie, you finallyget a diagnosis, very delayed,
okay? And you kind of, you kindof took a very particular
approach, I think, to managingyour Crohn's disease, especially
in those first years after youwere diagnosed. How did you go

(21:17):
about making those decisionsabout your medical care, about
your diet, about your exercise,just right after you were you
were diagnosed, and trying tofigure

it all out. Honestly, I think because I was
in denial for those first threeyears of my journey, and then
basically told to just wait andsee what bad things would
happen. And then by the time Idid go in and was told to wait
another three years, so sixyears had passed, and I feel

(21:51):
like at that point I didn't havea lot of trust in the medical
system, and I'd been in denialfor so long. So when I first got
the diagnosis, like theofficial, it's 2009 the six
years had gone by. At thatpoint, I wanted medications like
I was ready to like, let'sgreat. We know what this is, fix

(22:13):
it, fix me. And we started on, Ithink this is another downfall
of it. We started on the, Iguess, the weaker, you know,
medications. So we started onthe mesalamine tablets, 12 to 24
day, whatever it was. Then wedid the classical enemas, and

(22:34):
those weren't helping. And thenfinally, we started Imuran, and
that wasn't enough. So then wedid a combination of Iran and
Humira, and I think because Ihad spent so much time trying to
figure things out on my own, andthen when I got the medications,
the medication didn't fix meimmediately. There wasn't like

(22:57):
this, boom, take the pill andyou're better. And so that added
to my frustration. So here I wasaccepting the medication, but I
naively wanted to be fixedovernight, so a little bit of
history. In college, I did twofigure slash body building

(23:17):
competitions, so I had learned alot about diet, the metabolism,
fitness, supplementation, andwith that knowledge, or what you
know in hindsight, maybe lack ofknowledge, who knows? But
because I wasn't getting thatinstantaneous relief, I thought,

(23:40):
you know, what I can I can maybedo this on my own. Maybe I can
do it better and but that, thatdecision took a while. So I had
actually been on the HUMIRA andIran for about four and a half
to five years, and I did getinto remission, but it was as
probably many people haveexperienced. It was remission,

(24:00):
but I still had a lot ofbloating, a lot of pain. I was
still passing mucus, so itwasn't like where I thought I
should have been. So after aboutfour and a half five years, I
thought, You know what, I can dothis on my own. And I knew it
was a controversial decision.Then it still is. But I think

(24:23):
because I'd had those first sixyears of just being left on my
own, and I didn't really havethat clear education, like the
path of how this disease goes,or what the medications can or
can't do, you know, it was justkind of like, you know what?
I'll go back to figuring it outon my own, because I did for six
years. So let's do that again.So looking back, I would not say

(24:49):
that it worked. In short, I didlearn a lot about through my
path. I learned a lot aboutgratitude, stress management,
meditation. Medication,intermittent fasting, nutrition,
processed foods, every dietunder the sun that is advertised
for IB D, learned about it. Itried it. So I think in total, I

(25:11):
was off medication for abouteight years and then and then,
in the span of about 18 months,I had two moderate to severe
flare ups. So I had one in late2022 but because we were in the
middle of a move, literally inthe middle of a move across, you

(25:32):
know, the country, I didn'treally get the help I needed
then and then again. Earlierthis year, in 2024 I had another
flare up, where I finallyrealized at that point earlier
this year that I can't controlIBD any more than someone can
control, say, kidney disease orcancer, like there are just

(25:56):
certain things now I can do alot to Improve my overall health
and my state of being, but Ifinally accepted that I can't do
this IV D journey without thebiologic medication. And so that
took me. It was about eightyears to get to that point and

(26:16):
and so here we are today. I amhappily back on had Lima, which
is now a new eight years. Youknow, after an eight year span,
there's been a lot of drugs thatcame out that I'm now re
learning about, but had Lima isa biosimilar for Humira, and
HUMIRA is what I was on before.So I am now on that back in

(26:39):
remission, very grateful, andI've promised my doctor that I
will not be stopping it.

Did you go through all of this whole journey with
your with your currentphysician? Is that? Why is that
what prompted the please don'tstop your medication.

You know it wasn't my current physician. And
okay, honestly, I've hadmultiple, multiple physicians,
and that's probably anotherreason why I felt, I guess, let
down by the medical system I hadwhen I got out of when I first
got the diagnosis. I was myhusband was military too, so I

(27:18):
was at the army, the active ArmyHospital. And so I saw that
doctor for probably three, threeyears or so, but then, then I
got divorced, and so then I wason my own, and I transferred
into the the VA medical system.And so then I got a new doctor.
But I had that doctor for maybefour years or so, and he was the

(27:40):
one that I had when I went offmedications, and I was honest
and talked with him about it,and he, you know, he's like,
Well, let's do a colonoscopymake sure you're in remission
when you stop medications. Let'stry and do this as right of a
way as possible that we can. Sohe was very respectful of my
choices, and I did trust him andand felt good with him as a

(28:02):
doctor, but then then I got offthe medications, and not long
after, he's like, Oh, we nowhave an IBD specialist here at
the VA hospital, so I'm going totransfer you to him. And I'd
actually had really liked the GII had, but then he transferred
me away, and then this new IBDdoctor that I had for about a
year, year and a half, I neveractually met I had one phone

(28:26):
call with and then hetransferred and went to a
different hospital. So then Igot assigned a different doctor,
and I had that doctor for a fewyears, and I was starting to
really like her. But then, thenI got transferred again to
different doctor and then, andthen we moved so it's like, once
I was off medications, then Iwas just kind of like, now I'm

(28:47):
off and I've got nowhere to turnto because every new doctor I
saw it was like, Well, youprobably don't really have
Crohn's because now you're offmedication and and you're fine.
You're fine. You're not. I don'thave to admit you right now, so
you must be fine. So I think, inhindsight, I think that
experience then kind ofcompounded everything else I'd

(29:09):
had before, to where it was justlike, I'll see what happens. And
but this new, oh, and I didn'teven tell you the worst of the
doctors,

the worst of the worst of the doctors.

So then we moved here to Florida, which is where
I'm at now. I'm in the VAsystem, and I tell my primary
care doctor, I'm like, I need tobe seen by a GI. I had a GI, and
they're like, Well, I have torefer you to one first. So then
I have to wait for a newreferral to be seen by the GI. I
finally get the appointmentcouple months later. And mind

(29:43):
you, this is when I had thatfirst of the two moderate,
severe flare ups. So I had beenbleeding. I'd had intestinal
bleeding all summer long, andit, luckily, it stopped. So by
the time I got to see this newgastroenterologist, the VA. Here
in Florida, my colon had stoppedbleeding about three to four

(30:04):
weeks prior. And I go in, and Isee this new doctor, and I sit
down with him, and he looks atme, and he says, okay, so you're
not on medication, andcompletely ignore the fact that
I had bleeding for my colon forthe past three months. And he
looks at me and he says, Well,assuming you even had it,

(30:26):
assuming you even had it, 20years into my journey. And he
says, assuming you even had it.He's like, I don't need to see
you. You don't need to be seenby me. Follow up with your
primary care doctor, assumingyou even had it. There's the
door. Goodbye. It was like afive minute, five minute
meeting. I was so dumbfounded,like I couldn't even think of a

(30:51):
of a retort, or like a defensiveargument, like I had nothing. So
I walked out the door and Ileft, and I am really grateful
for the primary care physicianthat I had at that time, because
I went back and told her whathappened, and she's like, this
is ridiculous. You need to beseen by a gastroenterologist.

(31:12):
You need to be followed. I'm notqualified to follow your IB D.
You need to be seen bygastroenterologist. So she put
me into what's called theCommunity Care Network, which is
a group of private physiciansthat work with the VA when they
need, when someone needs to bereferred out, when the VA
doesn't have care that you need,they can send you to like a

(31:34):
private physician. And so that'show I got the doctor that I have
now, who I love and believes me,and I will hopefully stay with
him for a long time.

Well, you know, is he Young? Because
you've been shown on the road somany times,

he's probably, I don't know, middle aged, but I
guess I am too. So I'm like,okay, somebody

who's, I'm just saying, like, not going to
retire. Maybe I don't under 20years. I

don't think he's retiring soon, so I'm hoping
that he's, I feel like he's got20 years in him.

Okay, good. Because I can't, I can't with
this, how many times that youwere shuttled from one gastro to
the next, because that's superfragmented care, and I don't see
how anyone could ever get thefull picture or treat you
properly after only just a shortamount of time. And meanwhile,

(32:35):
they are on their, you know, ontheir way to somewhere else. So,
you know, they know that it'snot going to be a long term
situation. So it's just, I don'tknow that's really, that's
really wild, what happened to

you? And I think, you know, I've thought
about it, and I there's been somany times in my journey where
I've almost wanted to just throwin the towel and be like, Screw
it. Like, you know what, I amnot going to go back to the
hospital. Like you get sofrustrated. And this is coming
from a place where, like, I'venow spoken to so many people who
have IB D, and so many peoplewho have faced that frustration

(33:13):
of, like, I don't want to dealwith it. They don't believe me
anyways. And on the other side,I'm like, you gotta fight for
it. You gotta get the care youneed. You have to fight for it
and but when it happens to you,it's so just, what's the word
disheartening? Where it's justlike, Yeah, it's like, do I have

(33:33):
the energy to go meet this,another new doctor and try to
explain that I'm doing fineright now, but this is a
disease, as you should know,remission and relapse, and
because I'm not relapsing at themoment doesn't mean I don't have
it like trying to work up thatmotivation to advocate for

(33:55):
yourself each time is so hard,and that's even As someone who
knows the value of advocatingfor yourself, and would, without
question, tell someone else. Youknow, if the roles were reversed
and someone were telling me mystory, I'd be like, go to the
freaking Doctor, tell them youneed that. So I just I think

(34:20):
about all of the people who getstuck in a saga, even somewhat
similar, and they just reach apoint where it's like, I can't
even bother with it. The doctorsjust they're not helping, or
it's so hard to get that carebecause it, it still happens. I
mean, this was 2022 when I had agastroenterologist tell me after

(34:40):
me having the disease for 20years, assuming you even had it,
and then I leave the officequestioning, do I? Did I not
have Crohn's disease? Is thewhole 20 years a lie? And I
spent the next two weeks likescouring through 1000s of pages
of medical records. It's like,right here, ulcerated transverse

(35:02):
colon, like, ulcerated colon,like antibodies, ulcers, like
terms, I'm like, clearly it'sthere. That's

what I was gonna say. I'm like, you had, like,
there was objective proof thatyou were and then there would
have been, I hope biopsies,

and lots of biopsies,

like all of that, that said, yes, yeah, this woman
has Crohn's disease. And then,not only that, but the idea
that, okay, you might not knowexactly what something is, but
then if you treat it and it getsbetter, that kind of gives you a
clue. So like the fact that youwere on humera for a while and

(35:45):
then you your symptoms didimprove during that time kind of
probably means you haveprocesses like I don't
understand. So

for anyone listening, advocate for
yourself, it can never gounderstated

100% 100%
coming up Stephanie gets anotherserious diagnosis and a wake up
call you.
Oh, Stephanie, you're anoverachiever. You know, I feel

(36:27):
comfortable in saying as oneover achiever to another, you
have another you have anotherdiagnosis that you did not need.
As you mentioned, it is a kidneydisorder that is called IGA
nephropathy, and this means, andI'm going to explain it in very,
you know, just a couple ofsentences here, and you could
tell me, if I've got it wrong,and that this means that there's

(36:49):
a protein called immunoglobulinA IgA, and this builds up in
your kidneys, leads toinflammation and A loss of
kidney function over time, whichis terrifying. Okay, so tell me
more about this diagnosis andhow this has also affected

your life. Yeah. So, so you nailed it. So as as
you mentioned, I genenephropathy. I Gan, for short,
if you want to be in the know,or at least I call it, I get an
IGA n, but it is an autoimmunedisease, or, I think more
specifically, it's an immunecomplex mediated disorder, which

(37:28):
I think there's also like someconversation for IB D, as to
whether IB D is autoimmune, oris it immune mediated?

It is immune

Yes, so So is Eigen so I was diagnosed with
IGA nephropathy in 2021 and alittle bit of history on that.
So for years, I had microscopicblood in my urine. Every time
you do the urinalysis,microscopic blood, you can't see
it. But in 2018 2019 I hadwhat's called gross blood, and

(38:03):
it was gross, but it's justgross because it's visible. You
can actually see the blood. Somy urine turned like dark brown,
and so shortly after, I startedbeing followed by a
nephrologist, which I had tofight to get to the nephrology
clinic. So talk about advocatingyours for yourself, the journey
wasn't just with Crohn's, butfinally, I got in to see a

(38:24):
nephrologist, and he followed mefor my journey, had a
cystoscopy, which was also funcolonoscopy, but for your
bladder.
For those who don't know,

I'm just gonna say, I've had a couple of
cystoscopies as well, and like,I'm telling you I'd rather have
another baby. That test isreally, really something else. I
mean, talk about head down anddrive on, oh boy.

And I feel bad for the men out there that are
bad to have them. But, well...

That's true. That is true. Yeah, yeah. So
anyway...

So I was being followed by a nephrologist, and
in late 2020 my creatininelevels started to rise, and I
was passing protein in my urine.And those are, like, the two
big, like warning flags for IGnephropathy progressing. So in
2021 we did a kidney biopsy, andthat's the only way to confirm

(39:25):
whether it's igan or not. So gotthe biopsy in 2021 it was IGA
nephropathy. And I think,honestly, I think the diagnosis
of I gene nephropathy is reallywhat helped me to accept and
really understand how littlecontrol I have over autoimmune,

(39:49):
immune mediated diseases,because things simply cannot be
controlled by eating kale andturmeric and doing yogurt.

Just not how it works, because you were doing
those things.

I was literally doing all the things. I mean, I
was, I was drinking raw milk, Iwas making homemade sauerkraut.
I was I did the carnivore diet,I was journaling, I did yoga,
yada yada yada, like I did allthe things, and my reward was
IGA nephropathy, like, oh, boy,you can't outsmart the immune

(40:28):
system. Yeah, yeah. And, but Ithink, I think because of that,
like, it was just like this, Idon't know the universe hitting
me on the head. Like, like, howsmart slash dumb Do you think
you are? Like you cannot controlthese things. So I think,

(40:50):
because I had grappled with withIB D for so many years, and
being medication free, I studiedall these principles of like
meditation and mindset and andBuddhist philosophy. And I think
finally, when I got that Eigendiagnosis, it was kind of like I
have to accept that there arethings I cannot control. And

(41:10):
that was like one of the bigthings through, like meditation
and philosophies, where it'slike, there's just, there's some
things you can't control, andlearning to accept that is going
to serve you long term, insteadof dwelling on how awful it may
be. So I think because of that,I was able to accept the I Gan

(41:30):
diagnosis, which is, it's not agreat diagnosis. I mean, for a
lot of people, it's, it's likethis earth shattering diagnosis,
like you have this chronickidney disease, that 5050,
chance that might lead to renalfailure. Just have to wait and
see. And so I think having that,accepting that, also helped me

(41:53):
to accept that, you know what?IBD is not any different. I also
cannot control it, and it hasits own it may not lead to
kidney failure, but it couldlead to colon failure, and, you
know, a whole slew of otherthings. So I think it helped me
to, I guess that's the good partof my medication free journey,

(42:16):
is having learned some deeperinsights into my emotional and,
you know, mental health andlearning to accept things. So
that's a nice thing that I maynot have otherwise discovered or
ventured into, but it helped meto accept the IGA nephropathy
diagnosis, which in turn, thenallowed me, 20 years later, to

(42:36):
finally accept my Crohn'sdisease diagnosis. So my journey
continues, and I continue tohopefully evolve with it in
whatever direction it may go.The universe

is wild man, you know, I'm just gonna say I think
you probably could have learnedthe lesson in a different way,
probably, probably withoutgetting the without getting the
IGA diagnosis. I mean, gosh,geez, and accepting it, that's a
whole other situation aboutbecause you could say, well, you

(43:13):
need to accept it, because thenyou can move through it, and
then you're not strugglingagainst something that you can't
control. But then there's alsothe idea that, but if you accept
it, are you then allowing itinto your life and to control
you? And I can sort of see bothsides of this, and we should
probably end up somewhere in themiddle, but I really don't.

Yeah, there's and there's a there's a lot to
the mindset of just likeaccepting it, not accepting it.
Is it controlling you? Are youcontrolling it? But right the
body is gonna do what it does.Raw milk. Be damned, because I
was found it.

(43:57):
I went to the farm.

Yeah, yes, you detail that. But alright, so
when, yeah, you did go throughall of this in your book. Your
book is called Crohn's fitnessfood and my rocky road to
health. You go througheverything that we have
discussed. You go through theraw milk and how that became,

(44:21):
like untenable? Is that a goodword to use...?

Just hard to acquire. It's, it's a process.
It's a process. But let me tellyou, if you do get it from a
reputable farm, it is sodelicious and there are some
incredible nutrients in it. Butit's, it's a it's a whole raw
food, full of nutrition, which,which is good, but it's it's not

(44:45):
going to make Crohn's go away,or stop, or stop IGA nephropathy
from happening.

Yeah, because otherwise, then you would never
have developed that condition.Let's, um, close out your
journey a little bit. Becauseyou It took way too long for you
to get diagnosed. It took waytoo long for your health to be
taken seriously, and it shouldhave been. And then you got to a

(45:16):
point where you were frustratedand you were hoping to manage
everything yourself. Theuniverse came along and bunked
you on the head and said, maybeyou need to accept a couple of
hard truths about the way youryour body is behaving right now
and your immune system isbehaving right now. So could you

(45:37):
tell me more about how you'vecome back around to now I'm
going to be on medication, andhow you are doing now that you
are back on medication.

So I think there's, there's a couple of
things that I realized in this,this latest part of my journey,
my story, that keeps going. But,um, yeah, as I was just
mentioning, I think the kidneydisease and that diagnosis of
finally being able to acceptthat while I can do things to
improve my overall health, andthere's a lot of things that I
learned in that time of offmedication that I'll continue

(46:12):
like I'll still reach for themost nutritious foods that I can
and and focus on fitness.
And there's, there's a benefitto doing that and trying to
achieve the most optimal healthI can, but that's also going to
be in conjunction withmedication, because there are
certain physiological processesthat just in immune mediated

(46:36):
diseases, but just cannot bestopped without the help of
modern biological medications.So accepting that, but then also
in that process.
So I have a blog as well,Crohn's Fitness, Food. I've been
blogging part of my journey onthat so to be truthful and

(46:57):
transparent in my journey, Iwanted to go back through my old
blog posts and and I do want to,you know, kind of point out that
I've never tried to say, like,like, this is the way, or, like,
food, is it like? So in the blogpost, I never said, like, this
is gonna, like, fix everything,but, but it was, but it was
journaling. Like my it wasjournaling my process of all

(47:20):
right, I'm off medications. I'mtrying this method. Let's see
how, how it helps.
So it was real eye opening to goback through those blog posts
and realize basically every blogpost was me trying to overcome
some minor, minor symptoms. Andluckily, they were minor. They
were minor symptoms, minor flareups, but they were just minor

(47:41):
enough where it kept me goinglike minor enough that I didn't
feel like I needed to jump backon medication. But I wasn't. I
wasn't where I needed to be.
So going back through those old,old blog posts to make the
update that now I'm back onmedications, it really just made

(48:02):
me accept that all those years,I wasn't doing as good as I
thought I was. I did have somegood times in there. I mean, it
was eight years I wasn't incomplete, you know, horror for
eight years, but, but a lot ofthat times I was trying to
figure out how to overcome aminor flare up. And so right? It
allowed me to, you know, finallyrealize that I wasn't doing as

(48:27):
good as I should have been, andI probably should have stayed on
medication, but I didn't, andthat wasn't my journey.
But luckily, looking back, I didnot have a severe flare up those
complications we mentionedearlier, luckily, thankfully, I
did not end up hospitalized orwith or with a obstruction or
fistula or anything that wouldhave been horrible to go through

(48:50):
as well. Instead, I got tomoderate to severe flare ups and
a wake up call that this iswhere we're at. It's time to
accept it, and medication iswhat is going to help me long
term now and in the long term.So I'm happy to, happy to be

(49:10):
back on my hadlima. And it is,it is helping. I'm feeling good.
It's helping. So I'm happy tohave it. And it's been a long
circuitous circular, long andwinding road.

Long and winding road to get here.

A rocky road. It's a it's a play on Rocky
Road, ice cream, the rocky,bumpy road that where life takes
us.

Well, it's been such a journey. Thank you for
sharing all of it with me.There's so many learnings and so
many takeaways, and I do want toencourage people to go back to
your blog and to your bookCrohn's, Fitness, Food and my
rocky road to health. But beforeI let you go, tell everybody

(50:00):
where they can follow you allover the interwebs. I want to
ask you about your newestiteration in your working life,
where you're doing voiceoverwork and all of that like, what
is that like? And what has thatjourney been like? And what do
you enjoy about that the workthat you're doing now.

It is fun and it is hard. So in short, it is
hard.

I know people think it's not so hard.

In short, it's called voice acting. And so kind
of, I got on the path, becausemy background is, is broadcast
journalism. So I'd had like thattraining of like television and
journalism and and radio andbeing behind the mic and and
then I started my podcast in2018 and love the sound of my
voice, but I don't, but, youknow, that's what they all say,

(50:50):
but, but I really enjoy likethat audio aspect. And so then I
started realizing, when we movedout here, I was ready to
obviously end my career inTexas, because now I'm in
Florida and trying to puttogether my passions and my
skill set and what I enjoyed,and it was this voice acting

(51:12):
arena. And I thought I couldjust jump into it, but it's
voice acting. It's kind of liketrying to break into Hollywood.
Apparently, it's like, acting inHollywood. I'm like, man,
there's like, it's hard to getgoing in this but, but I'm
going, I am. I think I've gotabout nine audiobooks under my
belt, working on couple ofcorporate narration type things.

(51:35):
So it is a lot of fun. It is alot of work, but I'm really
grateful that it's something Ican do at home, because, as many
of us with IB D and chronicconditions know, going into an
office is not the thing thatmany of us want to do. Like,
there's so many days that likefatigue. I know a lot of us

(51:56):
struggle with fatigue. Fatiguehas been like my thing for the
past. I feel like six years, andit's just, I can't imagine
having to wake up at five, 6amgo put in, like, the eight hours
at the office, like when youhave to, like, put on your A
game and and you got to play thepart and do the role. It's
exhausting. So thankfully Idon't have to do that right now.

(52:19):
Hopefully I'll get more audiobooks and voiceover work and
continue to grow this thing, butit's a whole lot of fun and
keeps me at home, buying themicrophone and and pursuing some
things that I really enjoy.Yeah,

I think about this a lot. I have been a freelancer
since my son was a year old, andI was like, breaking down every
day over like dropping him offat daycare, and just decided to
take to take that plunge, andit's worked out really well. And
now I think there's no way. Andthen I wonder, how did I do it?
And how did I do it with aninfant? I don't even know. I

(52:55):
have no idea, I guess, because Iwas 20 years younger at the
time. But like, Yeah, but thefatigue is probably and if you
ask my husband what the worstsymptom is about the IB DS, he
would say that it's, it's thefatigue. He says it's like, like
if watching an energizer bunnyjust down when the fatigue takes

(53:16):
over. Um, yeah. Voice acting ishard, and narrating books is
hard. I don't have any problemlistening to my own voice
anymore. What is yourrelationship to listening back
to your own voice?

It took a while. It took a while. I jokingly
said, I love the sound of myvoice, which I do now. I like, I
accept it now, like, it's veryweird to hear yourself when,
yeah, for the first time to,like, really hear yourself on
audio, through a microphone, andit's like this that I always
sound but it's weird, and aftera while, then you just kind of

(53:53):
get used to it. It's like, okay,that's that's my that's my
voice. So and then you can getto know it. You can get to love
it. You can appreciate it for,for what it is. And so I think I
appreciate it for, for what itis now. But it took a while to
to not think, Wow, is that whatpeople hear? Sounds so different

(54:20):
in my show.

Yeah, that's very funny, but I completely relate
to that. So okay, Stephanie,let's go through all of the
places that people can find youwhich there there's more than
one. So I don't know if you havea particular way that you
normally go through it, so wedon't miss anything. So maybe

(54:43):
I'll just let you loose and letyou tell the people where to
follow you.

I think the easiest way people can find me
and links to my book and podcastand all that jazz is to simply
go to my website, which isCrohn's Fitness, food.com
there's a link to the podcastright at the top. And if you
scroll to the bottom, my socialmedia links are down there at
the bottom, and your socialmedia is is also usually

(55:08):
Crohn's, Fitness, Food, yep. SoI do a Facebook, which I don't
post very often, on anInstagram, Which, admittedly,
I've been a little bit absent onthere recently, but I do tend to
get back, I think I have alittle bit of work. PTSD, my
last job, my last job in Texaswas marketing communications for

(55:28):
private school. So it was like,you have to do the social media.
You have to do, like, all thepromotions. And so now it's just
like, Oh, I'm so tired of socialmedia, but, but I still try to
force myself to to get on there.

Well, maybe we can find a way to make it fun again.
You know, maybe there's a wayfor you to break through that
and make it more fun and andcreative. Again, I think that's
what I like. Yeah, about that isthat, because most of my job is
kind of like technical writing,so doing the podcast, and things
that are associated with thatare more creative, and so it

(56:06):
just it feels good to kind offlex that muscle a little bit. I
think

I just need to keep reminding myself, like this
isn't work anymore. This is yourown stuff. Like you can do your
own stuff now,

Right? But and you can have some fun with it
exactly

and connect Exactly. And I do love
connecting with the community onthere that is like, it's huge. I
mean, it's so amazing, justespecially the IB D community
that's out there on socialmedia, just how quickly people
are willing to connect and happyto share and support each other.
So I definitely love seeing thatand being a part of it.

Agree wholeheartedly and with that
great segue into saying, Thankyou so much for speaking with me
today, and thank you for yourvoice and for all of the stories
that you have brought to Crohn'sFitness, Food, the podcast and
your book, which I enjoyedimmensely, and for going through

(57:09):
your journey with me andbringing these learnings forth
for other people, especially forthose that are newly diagnosed,
and I hope also for healthcareproviders who may be listening,
who can also have some takeawaysfrom your journey as to maybe
how we can do better by peoplewho are going going through that

(57:30):
first process of gettingdiagnosed. So all that to say,
thank you so much Stephanie.

Well, and thank you so much for having me. And
thank a big thank you to all ofthe work that you're doing in
our community. I've listened toyour podcast for a long time,
and just I love the stories thatyou share, and the information
and the research and the expertsthat you bring on. You have so
much to share, and it's sovaluable. So thank you for for

(57:56):
doing that, for doing the workyou do, and thank you for having
me on to share a little piece ofmy story.

Hey, super listener.
Thanks to Stephanie Gish forconnecting with me and for
creating this episode together.I highly recommend her book,
Crohn's fitness food and myrocky road to health. Stephanie
is an experienced voice actor,so she has also made an audio
book version available. Herpodcast, Crohn's fitness food
can be found in all the podcastapps, including wherever you're

(58:26):
listening to this right now.There's so much more to her
story than we could includehere, so I encourage you to
follow her in all the placesacross the interwebs. I know I
could listen to her voice allday.
As always, links to her andtranscript everyone's social
media handles and moreinformation on the topics we
discussed is in the show notesand on my episode. 161 page on

(58:48):
aboutIBD.com.
Thanks for listening, andremember until next time, I want
you to know more about IB D.
About IBD is a production of Maland Tal enterprises.
It is edited, Written, producedand directed by me Amber Tresca.
Mix and sound design is by MACCooney. Theme music is from

(59:09):
Cooney studio. You.

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Finding the Balance - Honoring Veteran's Day With Stephanie Gish