May 21, 2025 • 51 mins
When your gastroenterologist is also your dad, navigating the complexities of Crohn's disease takes on a whole new dimension. Angie's powerful story reveals a journey of discovery, resilience, and unexpected insights into managing IBD through life's major transitions.
Diagnosed in 2017 following a period of intense personal stress, Angie shares her quest to understand why she developed Crohn's without family history. Her analytical approach has led to fascinating observations about potential triggers and management strategies. Most notably, she's discovered her Apple Watch provides possible early warnings of impending flares through heart rate variability changes.
The conversation takes a particularly compelling turn when Angie discusses her pregnancy experience. While initially smooth, a flare during her third trimester created significant concerns about her baby's development. She candidly shares how her medical team balanced medication adjustments with pregnancy safety, ultimately leading to the birth of her healthy son.
Beyond medical management, Angie reveals how her experience with cold exposure seemed to help her, and how changing her relationship with exercise from aesthetic goals to gratitude for movement transformed her approach to fitness. Her perspective on finding meaning through chronic illness challenges listeners to consider how difficulties might lead to unexpected gifts – deeper connections, greater self-awareness, and opportunities to help others.
Whether you're newly diagnosed, preparing for pregnancy with IBD, or simply seeking fresh insights on managing a chronic condition, Angie's story offers valuable perspectives from someone who's navigating these waters with honesty, humor, and hope. Listen now to discover how technology, family support, and shifting perspectives can create a path forward through the challenges of inflammatory bowel disease.
Links:
- Our episode with Natalie Hayden
- Natalie's Instagram
- Our episode with Dr. Tiffany Taft
- Our episode with Josie McGarva re: heart rate variability
- Our 2nd episode with Jose McGarva and also Stacey Collins, RD about research
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi, I'm Alicia and I'm Robin, and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week, we talked to Angie V.
Angie was diagnosed withCrohn's disease in 2017.
We talked to her about theresearch that she's done to try
to figure out why she may havebeen diagnosed with Crohn's
(00:21):
disease when she doesn't have afamily history.
We talked to her about how sheuses her Apple Watch to try to
track some things that may beimpacting her disease and her
symptoms, including things likeheart rate variability and
others.
We talked to her about herpregnancy and what she did to
stay healthy and safe during herpregnancy, including when she
had a flare, and we talked toher about what it's like to have
her dad as hergastroenterologist and the pros
(00:42):
and cons of having a familymember who's helping you track
your disease that closely.
I think you'll enjoy the storyas much as we did.
Cheers.
Speaker 2 (00:53):
Hi everybody, Welcome to Vow Moments.
This is Robin.
Speaker 1 (00:57):
Hey everyone, this is Alicia and we are so excited to
be joined by Angie.
Angie, welcome to the show.
Hi, thank you for having me.
We are excited to hear yourstory in just a second, but our
first, very unprofessionalquestion is what are you
drinking?
Speaker 3 (01:09):
I'm actually having a decaf coffee right now.
I try to limit the caffeineafter a certain time, but that's
kind of what I'm drinking atthe moment.
Speaker 1 (01:16):
I understand this one very much, especially for me it
was like hit 40.
And then it was like if youcan't have caffeine after, at
least in my case I Like if youcan't have caffeine after, at
least in my case I stop at noon.
That's like a hard stop for me,because otherwise I just like
good luck.
Speaker 3 (01:28):
Yeah, and I can't even touch cold brews anymore.
I don't know.
I think those are way toostrong for me.
Speaker 1 (01:32):
I don't know I wasn't a big cold brew fan, but now
I'm like, now I'm a little bitafraid of it.
So, okay, I will try to stayaway from it.
Speaker 3 (01:40):
Last time I had one, it sent me into a panic attack,
which is crazy.
Oh no, oh my gosh, very weird Inever had a caffeine problem
until probably the last fewyears, and then I love caffeine,
so that was just very sad.
For me it was a sad moment.
Speaker 1 (01:56):
Robin, what are you?
Speaker 2 (01:56):
drinking.
I can drink caffeine until thewee hours of the day and often
do self-medicating, but today itis chilly and I'm having hot
chocolate oh, that's awesome.
And also water, leisha what areyou drinking?
Speaker 1 (02:12):
I'm having tea today, but I also, just in honor of
the other happenings today, I amdrinking a glass of wine as
well.
So I'm drinking some lovelyZinfandel from the Fontanella
family winery.
Cheers, guys, cheers, cheers.
Okay, Angie, all right, nextquestion for you Tell us your
IBD story.
What brings you into ourcommunity so?
Speaker 3 (02:32):
I was diagnosed with Crohn's in 2017, but I had some
signs leading up to that priorto the diagnosis.
It was December of 2017.
So I'd like to go back a littlebit, because I think
environmental factors have a lotto do with Crohn's, but I also
think there is geneticcomponents to it.
I think it's just like a mixFor me personally.
I've tried to figure this out.
I'm sure as many people whohave Crohn's or ulcerative
(02:54):
colitis would try to figure thisout.
Why do we have this?
I just think it's a perfectstorm of events environmentally
and genetic.
That kind of contributes to justchaos within the body.
So I was in 2016,.
I really I was really focusedon my relationship with somebody
that I was seeing at the timeand there was some.
There was some issues there.
(03:15):
We had been seeing each otherfor two or three years at that
time and I was really stressedin the relationship.
I find out I found out in 2016,that there was some infidelity
going on and I just kind of likereally turned to alcohol and I
was drinking a lot, and that waseven before like dating him.
I was a heavy drinker.
I would party in college and Iwould drink all the time.
(03:36):
But I started to use it to kindof self-medicate through like
some of these things.
So you know, I didn't want tofeel the stress and I think
stress is a huge thing that goeswith Crohn's so I was drinking
a lot, I had some family issuesgoing on and just the stress of
all that.
I just wanted it to go away.
So I kind of used alcohol for along time.
But once I found out that my exwas cheating on me, I decided
(03:58):
to kind of just move forwardfrom that relationship and just
kind of commit to a healthierlifestyle of fitness and working
out and I completely cut outalcohol, which was great for my
body and everything.
But I feel like that's kind ofweird because that's when my
symptoms started.
It's when I stopped drinkingand I think it's because I
self-medicated so much withdrinking that it kind of shut
(04:19):
down a lot of that, the symptomsthat I would have had.
But when I didn't have anoutlet for stress, I think that
my body kind of didn't know whatto do.
You know that was 2016.
I ended up actually gettingback together with the same
person for another whole year.
We moved in together, same sortof thing was still going on and
I just couldn't trust him and Iended up leaving and moving
(04:39):
home at the age of 29.
And I was like, oh my God, Ican't believe I'm moving back
home.
And it was just.
I was really, really upset atthe time, just having to kind of
start over, and you know, hewas a lot older than I was, so I
thought this was going to bethe person that I was going to
be with and I was just goingthrough so much stress.
But before I ended up movingout after a month of living with
him in 2017, I'd lived with himjust about a month I had really
(05:04):
bad psoriasis, like all over myhands within that first month
of moving in and I never hadpsoriasis before and I went to
my dermatologist and she gave meOtedla didn't work for me, but
I did.
I did look up that there is aconnection to like skin issues
with Crohn's disease and thingslike that.
So I thought, well, that couldhave been like a telltale sign
(05:25):
prior to the diagnosis too.
Growing up, I had eczema, so Ialways had skin issues, so I
thought it maybe was eczema, butthen it was diagnosed with
psoriasis and it kind of wentaway after about a month.
That year that I moved in withhim was the same year that I
started teaching for the firsttime within my own classroom.
Another stressful event, sostress of living with him,
stressful event of teaching,having psoriasis, and just I was
(05:48):
really really exercising a lotbecause I had turned away from
that lifestyle that I had, youknow, used to have and I kind of
just moved towards a healthierlifestyle, fitness.
So I would get up at 4.30 inthe morning, I would work out, I
would come home, I would bewith the dog, I would, you know,
make dinner for him and me, andthen I would go to bed and I
(06:10):
was, I was exhausted.
I mean, it was going fromliving at home and kind of doing
my own thing and seeing myboyfriend on occasion to living
with him, having my ownclassroom.
It just it was veryoverwhelming and just such a
short amount of time and I don'tthink my body kind of knew how
to handle it.
So the psoriasis kind of wentaway.
That was October and Novemberof 2017.
And then, in December of 2017, Istarted having some.
I started to notice like I wasreally leaning out, like really
(06:32):
leaning out, and I wasn't evenlike trying to.
It didn't connect with me thatevery morning I would go to the
gym and I would take mypre-workout and I would use the
bathroom within like 15 secondsof taking my pre-workout.
And I look back, I'm like Istarted pre-workout in 2017.
And whatever's in some of thepre-workouts I was using a
(06:55):
company's pre-workout that haslike lots of different stuff in
there that I can't even read theingredients on.
So I don't even know.
You know, but I knew that Iwanted to, you know, to use
pre-workout because I wanted toget stronger and I wanted the
extra support.
Looking back, like I wish Inever took it, because I do
think that that had something todo with just speeding things up
in my system.
So I would get up early, hitmyself with pre-workout right
(07:16):
away.
I would use the bathroom likeliterally within 15 seconds of
drinking it and then go do myworkout and I thought that was
normal.
I was like, well, maybe it'sjust the pre-workout kicking in
and whatever.
And then, as time went on, inNovember, it started to be like
I started to notice that therewas maybe some blood in my stool
and I didn't understand, likehow that could happen.
I was like did I eat beets orsomething.
(07:36):
I would call my dad up becausehe's the gastroenterologist and
I'd be like, hey, I just go intothe bathroom a lot more and
like it's, I think I see likeredness, I haven't had any beats
.
He's constantly asking me ifI've eaten beats.
That was like the inside jokebetween us for like ever.
I'm like no, I haven't touchedanything red Like I don't.
You know so.
And I started to have this dullache in my lower left side and
(07:57):
my disease is active in mysigmoid colon.
So that's like where most of myissues come from.
But yeah, so I was starting tohave a lot of pain and he's like
All right, you know what?
Fine, he just wanted to kind ofshut me up.
He's like Fine, we'll just.
We'll just scope you, we'll seewhat's wrong.
I'm sure you're fine because itdoesn't run in our family or
anything.
And that was a very mild flareup for me.
(08:27):
That my first one.
We were able to like nip it inthe bud with like just a prezo
and Imuran is all I took.
I didn't take a steroid at thatat that time.
I think, coupled with the factthat like I took those two
things, though, like my immunesystem started to get suppressed
from those drugs.
I started to get colds muchmore frequently after being on
(08:47):
some of those medications andthen, you know, I was diagnosed
while I was still living with myex, so that was really
stressful.
And then I found out some moreinformation about the
relationship that I didn'treally want to find out and that
really set me over the edge,and that's when I moved out.
That was when I was in one ofmy biggest flare ups.
That was in July of 2018.
And I would have beenhospitalized had I not had my
(09:09):
dad, but I moved back home.
So he's like there's no waywe're going to put you in a
hospital.
I can bring you the anythingyou need.
You know IV, you can hook it upat home medications and
everything.
So I'm grateful, but some partof me kind of wanted to be in
the hospital so that I couldjust feel like I was physically
getting the care from everybody.
That I did because I just feltso overwhelmed.
(09:31):
I've never experienced pain likethat in my entire life and I
still to this day.
There's nothing that's been aspainful as being in an active
flare up.
Even the C-section I had withmy four month old four months
ago, I would, I would go through.
I told my husband he's like,how was it?
I was like, well, I would gothrough a C-section every month
for the rest of my life.
Literally, I literally would.
(09:51):
It meant that I would neverflare up again.
I would literally do that.
It's crazy, the amount of painthat you can be in from a flare
up.
Yeah, so we were trying to getit under control with
medications in 2018.
I took Euceris and that helpeda lot.
It took about four weeks for meto get out of it completely,
right before the school yearstarted.
(10:11):
So I was able to start mysecond year of teaching.
That year was great.
I met my now husband, who I'vebeen with for almost seven years
, and it was, you know, it waspretty wild.
Like everything kind of workedout Like I would have never
applied for this new job a new.
It was pretty wild, like likeeverything kind of worked out
Like I would have never appliedfor this new job a new teaching
job that I got, had my ex notbeen doing things behind my back
(10:32):
.
I kind of wanted a fresh start.
So I, you know, I applied for anew job.
I got a new job.
My coworker there is actuallyintroduced me to my husband.
She met him and she's like Ithink I have somebody for you at
the gym.
So she went up to him and sheasked him like if he was seeing
anybody.
And he was like no, like whoare you, by the way?
(10:53):
Like I don't really know you.
And then you know we ended upmeeting on a blind date and
we've been together ever sinceand.
But I find that funny becausethe bad things that happen in my
life, like things that happenedwith my ex cheating, and all of
that ended up leading me down aroad that actually is beautiful
now and like I love the lifethat I have today.
You know, despite that, like Iwas able to kind of just meet
new people through this new job,meet my husband, and he's able
(11:14):
to be somebody that actually canhandle my disease.
My ex was not.
He felt he didn't know what wasgoing on, but he was not
supportive at all and my husbandhas been very supportive with
it.
Like it just it makes sense,like things end up happening and
then I feel like it all comesout to be the way it's supposed
to be, you know.
So I've been with my husbandnow for seven years.
He's seen me through flare-upstoo, so that was in 2018.
(11:36):
I met him.
I didn't have a flare-up againuntil like 2020.
There were little bouts of likeissues that I was possibly
flaring up.
We would kind of hit me with alittle bit of some steroids and
then I'd kind of go back into aremission state for a while.
It wasn't until COVID that Iended up getting into a major
flare up.
I think it has a lot to do withthe fact that in 2020, I
(12:00):
because I had so much more time,like Zoom, being at home and
teaching.
It was very stressful, but Ialso had more time at home.
So my parents have some weeksand I was just working out more.
I was outside more because Ihad more time at home.
I can go for a walk and I thinkI was kind of overdoing it again
.
I have a tendency to kind ofoverdo it physically and so,
yeah, I was pushing myself.
(12:20):
Over the summer School yearcame, I had been lifting pretty
heavy and like pushing myselfand I think I think that that
does have to do with with my, mydisease when I overdo it with
physical exertion and stressjust stress on the body in
general, maybe not taking enoughrest days or whatever.
But yeah, so I ended up flaringup after going to an apple
orchard which I say because Imet somebody in Mexico on a
(12:42):
vacation who has Crohn's and waslike I can't eat apples.
And I'm like really, that's sofunny.
You say that I go because mymajor flare up that I was in
happened right after I went toan apple orchard and I took a
bite of an apple from the treeand I had never, ever done that.
I usually go to a grocery storebuy an apple.
But yeah, I kind of connectedthe dots.
It was after we had bakedsomething with the apples and I
(13:04):
had a couple apples from theapple orchard that the skin on
the apples probably sent me intoa flare up.
I was probably already like onmy way there, but I think it
sent me over the edge and thatwas the worst flare up I have
ever been in in 2020.
I'm 5'4", so I went from being135 pounds to 107 within three
(13:25):
weeks and it was like I couldn'tkeep anything in.
I was in physical pain.
I just couldn't go anywhere.
I couldn't do anything.
I was sleeping on the floor inmy living room because I
couldn't make it to the bedroom.
You know it was the worst painI had ever been in and I had my
husband there and his dad cameover to help out with the dogs
and it was very supportive.
(13:45):
So I'm like so grateful for thesupport system that I have, but
that was really challenging.
I ended up getting out of thatusing Euceris again.
It took a while to kick in, butI think, well, actually, let's
let me back that up.
Actually, I think it wasactually Predazone that we did
for the first time, because Ihad gotten to a point where
Euceris wasn't working correctlyand I think prednisone was
(14:07):
stronger.
I developed moon face, so theyhad to kind of I don't know if
you guys I mean, I'm sure you'veheard of moon face before but
like yeah, so my face was hugeand like I guess that's my dad's
like we got to get you off ofthis.
You've been on it for almost, Ithink, over a month.
I was on like 65, 70 milligramsof prednisone.
It was horrible, and then weended up weaning off of
(14:29):
prednisone and kind of going onto Euceris.
I started to kind of flare upagain in 2021 after going to
Euceris in like March, andthat's when I did like we have
to try a biologic now, like wecan't just give you medications
like these, just the steroidslike that.
So then I you know quickly andI know I'm very fortunate
because a lot of people strugglewith getting on the right
(14:51):
medication and getting the rightmedication quickly I went to
Humira within about a month.
My mom works at my dad's officeso she was able to talk to the
insurance companies.
I again very blessed for all ofthat, because I don't think my
parents realized how bad Crohn'swas until they saw that I had
it.
And now I'm sure my mom, whenshe sees patients coming in now
(15:14):
to the office, she's like I feelso bad for these people.
I understand now.
I didn't understand until youwere diagnosed.
So that was 2021.
I've been on Humira since then.
I'm still on Humira.
I've had to bump it up toweekly dosages instead of every
other week.
We did do every two weeks for awhile, but there were still
(15:34):
bouts of flare-ups.
I had one in 2023, june of 2023, after a colonoscopy.
Actually I think that kind ofsent me into a flare up, just
the pills that you take to kindof clean yourself out.
And then 2024, I thought that Iwas clear during my pregnancy.
I felt great most of mypregnancy and then all of a
(15:55):
sudden in July we ended upmoving into our new house and
the moving, coupled with theheat outside, coupled with
exercising, coupled beingpregnant all of that perfect
storm, I think, another flare upand that was the scariest one.
That was not the most painful.
It was pretty painful but itwasn't the.
It wasn't.
It was pretty painful still,but it was just scary because
the baby and I was just worriedabout him.
(16:17):
I was going for weeklyappointments and he got down to
like the first percentile withinlike.
It was like how many weeks wasthat?
It was probably like 33 weeks,34 weeks at that point and he
was like at the first percentilein weight.
They're like no, you know it'sokay.
And I'm like oh my God, it'sbecause I'm not retaining any
nutrients, like I'm just, I'mnot retaining anything.
(16:38):
So I was forcing myself to eatand like, have, like, ensure
drinks and do as much as I canand have as much protein shakes
and everything for the baby, asmuch as I could.
But every time I would eatsomething I'm like I know this
has to come out and it's goingto be so painful.
You know, it's just like it wasjust such a battle.
But Jason was fine.
I mean he was God willing.
I mean back on wood, he wasfine.
(17:00):
He ended up coming right at 39weeks and four days.
I had a C-section and heweighed six pounds, six ounces.
So he was still.
He was pretty solid weight.
I mean I think he was in the18th percentile when he was born
.
But I had gotten out of theflare up for like the last three
, four weeks.
I was only in the flare up forabout three, four weeks during
(17:21):
like week 32 to week 35 or 36.
So the fact that I got out ofit I think really helped him
gain some nutrition andeverything.
But yeah, I've gone throughquite a few flare-ups in the
last.
You know what, six years, sevenyears now that's been diagnosed
.
But I think that you know Iquestion whether or not Humira
is the best drug for me.
I bring that up to my dad allthe time because you know I'm
(17:42):
like should it be this way?
Should I still be having theseissues if I'm on a biologic?
Because even the last few daysI've been struggling with I
think I might be kind of gettingsome having some flare up
symptoms again and it's likeit's because I didn't take my
Humira.
I'm trying to move it to everynine or 10 days because I keep
(18:04):
getting sick because my immunesystem is so suppressed if I
take it weekly.
But then when I do that I starthaving some flare-up kind of
symptoms, not huge ones, but Ihave some telltale signs that
I've noticed.
When I flare up I get reallybad eye twitching Very strange,
but every time I've had aflare-up, one of my eyes starts
to really just twitch.
I think it's stress related,but that's it's.
(18:25):
It's something I've noticed.
I get these little red spotssometimes on my legs, which I've
I've read about that beforeJust telltale signs that I I
kind of just like know what itfeels like for me now, like if
my lower left side is hurting,it's probably not good for me,
you know like that's just I knowthat's where my disease is like
localized.
So I just I'm more sensitive toit and I use my Apple Watch a
(18:48):
lot to kind of help me.
And this is something I kind ofwanted to touch on because I
think it's really important ifyou have like a Fitbit or an
Apple Watch.
I have noticed a trend that hasbeen consistent every time I've
been in a flare up, and that ismy heart rate variability is
very low.
When I'm in a flare up and Ihave like the stats on here it's
like it goes down to the 20sand 30s average throughout the
(19:11):
day.
And when I'm not in a flare up,my heart rate variability is in
my 90s, 80s, 100, somethinglike that average throughout the
day.
And then the other thing I'venoticed the other trend is my
heart rate is.
You know, my heart rate isusually like 53 beats per minute
, 54, something like that.
(19:31):
When I'm in the flare up itgoes up to like an average of
like 63, 64 per day.
So it's significantly higherthan what it normally would be.
And that has been true everytime I've been in the flare up.
So I hate that I use my watch somuch to help me, but it really
has been a telltale sign for me,because people are like oh,
you're so obsessed with it, likeyou're so obsessed with your
(19:53):
watch, like, just you know, justlet it go.
My husband's like just let itgo, like you know what you're
going to be fine.
I'm like no, it's like my heartrate variability today is like
30.
I'm like I'm something'sstressing me out.
I don't know what it is, butyou know, like I've used it to
kind of help me know when totake a step back, like from
exercising and taking more restdays and things like that.
And I hope that helps somebody,because if I would have known
that before, I think that Icould have prevented some
(20:16):
flare-ups by just, you know,taking it down a notch a couple
of days before that.
You know, I saw those signs.
I hope that that helps someonedo it.
That's kind of where I'm atright now with my disease.
So I also want to add in that Ithink that seasonal Crohn's for
me is real.
I tend to flare up more in Julyand August than I do in other
(20:36):
months.
I not to say like that doesn'thappen, but the bad flare ups
I've had usually are like Augustish.
So I don't know, I think Ithink it has to do with the heat
.
Some of the things I'm doingnow to kind of help me that I
think are, have helped mebecause the medication's working
but I still have symptomssometimes.
(20:57):
So a couple of things that havebeen helping me.
This is kind of weird, but whenI put my son to sleep.
He's four months old.
I kind of chant and I do likean own chant and it really puts
my baggage nerve and everything.
My heart rate gets very low andI and it has helped me kind of
keep that low resting heart ratebecause I want to stay low,
(21:18):
cause I know that when it's highthat's a symptom that I'm
flaring up.
Cold exposure was another one.
This is kind of a funny story.
I went to the Bears-Packersgame.
My husband's a huge Packer fan,I'm a huge Bears fan.
I took him in early January andwe were out in the cold for
like three hours tailgating.
He loves it, it's like histhing, great.
And I cannot stand being cold.
(21:39):
I just hate it.
So we got club seats so I knew Iwasn't going to be cold for
that long.
I was just going to be outsidetailgating for a little bit and
I was like all right, I have theinside to look forward to soon.
And I got inside my you know Ihad been out in there for I'd
been out in the cold for threehours.
I got inside, I was sitting inmy chair and like I got a
notification on my watch that myheart rate had gotten really
(22:00):
low like 40s, 41, 42 beats perminute and it hits, reset my
like autonomic nervous systembecause the next day and the
days following, two, three daysfollowing, my heart rate
variability was so high and Ithought that was so interesting
and I felt great and I was like,wow, cold exposure.
(22:20):
I had always heard about it andI'm like I never have tried it
but that cold exposure, I think,really helped me get back to
like a good place, balancedplace, for my disease and so I'm
trying to go out in the coldbut I will do anything to not be
in that kind of pain, you knowdo we see cold plunges in your
future in the summer?
(22:40):
We talked about like getting one.
We have a basement, we have agym basement, we have like a
bunch of stuff down there gymequipment.
I'm like we should.
We should add that.
We should add that to the listof things you know.
I I don't know.
I do think it helps.
I didn't want to jump on thatbandwagon because so many people
were talking about cold plunges.
I've never done a cold punch,but just being out in the cold
really did.
My heart rate that day of thegame was like 127, which is
(23:03):
super high average.
It was like it was.
It was unheard of for me, likethat was the average for the day
, so that's something that'sbeen helpful.
I actually have been doinganother thing that I think helps
a lot of people.
Colostrum is, I don't know.
It's like a new.
A lot of people are doing this.
It's I think it's called firstmilk.
It offers a range of healthbenefits.
It's packed with proteins,antibodies and it supports the
(23:26):
immune system and the reasonthat I got it was because it was
.
It helps improve gut health andreduces inflammation and
promotes a balanced microbiomeand I was like, okay, I'm into
that, I can, I would love tohave a balanced microbiome.
So that was something I waslike.
I do that every morning I havesome colostrum and then I just
drink some water afterward.
But yeah, I think that'simportant to know that for me
(23:47):
also, besides the fact that I inmy early days of like before
getting diagnosed, another thingI had always, like I said, I
had always had eczema, but Ialso kind of I think I had a lot
of anxiety.
That was like undiagnosedgrowing up which a lot of people
I'm sure do and just very hardon myself and like the fact that
, like I would, I started tokind of have like restrictive
(24:08):
eating.
So like I definitely think thateating, disordered eating,
plays a part in my disease too.
I feel like today I don'tstruggle with disordered eating
anymore, but in my early 20s, inmy teens, I did so I was.
I think that plays a part in my, my chronic illness too, just
the fact that like I wouldrestrict, like I wouldn't eat as
many calories as I probablyshould, probably not eating the
(24:29):
correct things that I should andjust not giving myself a
balanced variety of nutrition ata young age.
And then I do vitamin D everyday, vitamin C and then a
prenatal and then elderberry,because that's supposed to help
with common colds and, like Itold you, I think I get sick
more often because I'm on Humiraso frequently that it has been
(24:49):
difficult for me to stay awayfrom getting the flu, getting
colds, strep throat, those kindsof things.
Speaker 1 (24:54):
We've talked to people that have gotten pregnant
before, but I think you're thefirst person we talked to that
has like gone into a flare whilebeing pregnant, so I would love
to talk a little bit more abouthow did your OB-GYN work with
your GI slash dad to make surethat they were managing this
together to try to keep you ashealthy as possible.
Speaker 3 (25:12):
Yeah, so I was seeing a high-risk doctor as well, and
so that was the one that I wasgoing to primarily, and he and
my dad did talk about what thebest solution would be at the
time.
They did not want me to be onsteroids during pregnancy
because that could have someeffects to the baby, so we just
amped up my Humira from beingevery two weeks to every week,
(25:36):
and that did kick in after abouttwo and a half weeks of being
in the flare up fully.
It was two and a half weeks ofhell, but it did kick in and it
did end up working.
That was what they did.
I was like I wished I couldhave taken some prednisone or
Euceris, knowing that that hashelped in the past, but that was
not the case.
I haven't taken prednisonesince 2020 now, which I'm very
(25:57):
grateful for.
But yeah, I know that that hasbeen the easiest way for me to
get out of flare-ups is justtaking a bow to steroids and
then tapering off.
Speaker 1 (26:05):
Gosh.
Yeah, that must have been soscary, though, because you're
doing everything right, you'redoing exactly what you need to
do to stay healthy and staypregnant, and then, all of a
sudden, something like thishappens.
Gosh, I'm sorry.
Speaker 3 (26:16):
Yeah, it was really challenging.
I have a very strong faith.
That played actually a reallybig role in my diagnosis with
Crohn's.
I did not know the severity ofCrohn's when I was diagnosed.
I thought, okay, like it's such, it's an illness, I guess I'll
deal with it.
It wasn't that bad the firsttime I flared up so I was like
okay, but although Crohn's hasbeen challenging, it's really
(26:37):
afforded me the opportunity tobecome more spiritually
connected and really rely on myGod, because I don't have
control over this as much as Iwant to and as much as all of us
want to have control over ourdiseases.
And we try to figure it out.
We use our Apple watches, we goin the cold plunge, we do all
(26:57):
these things.
The reality is is if my body'sgoing to flare up, it's probably
going to, and I don't have alot of control over that and
that's when I rely on God and Ithink that even just me being on
this podcast, like the factthat I'm here speaking to you
guys, could be a reason that Ihave grown so I can help
somebody else, and I think ofthe bigger picture today, like I
(27:18):
truly do.
My God has helped me through somuch Like I, I I had gone
through I'm gonna get emotionalon the podcast I had gone
through several miscarriagesbefore having my son and I
thought that it was related toCrohn's.
And I and I will say thatbecause I was like, well, maybe
it's my, you know, who knows isthe inflammation.
And you know, we found out thatI had a uterine septum which I
(27:40):
had surgery for in June of 2023.
That's also when I had mycolonoscopy, right within that
couple weeks after.
So, the surgery, thecolonoscopy, that's why I think
I had that flare up at that time.
It was a lot of stress on thebody.
But, point being that, I thinkthat definitely there was a lot
of hard things that happened inmy life the last couple of years
that stressed me out, but Ididn't flare up a lot during
(28:04):
those miscarriages or anything,which is quite crazy, because I
thought for sure that my bodywould go into overdrive being
stressed that way.
But, yeah, no, I, it's up toGod Ultimately, like I don't
have control over this disease.
I don't know why it happened.
I don't really understand it.
I've learned to have a lot ofacceptance around it and to talk
to people openly about it,because it's nothing to be
(28:25):
ashamed of.
It's something that I have,that I have to deal with.
But you know what?
Other people have, problemsthat I don't know about, and if
I can help somebody by speakingabout my problem and telling you
guys certain things that haveworked for me, like cold plunges
, like some of the things thatI'm doing, like maybe that's why
I have Crohn's, maybe it's tohelp somebody else that has
(28:45):
Crohn's, and that's the way Ithink of it now.
I don't think of it as being asentence that God gave me.
I think of it as being anopportunity to help somebody.
Speaker 2 (28:51):
So sometimes we, as patients, get obsessed with
metrics.
It's one of the reasons why Idon't wear my Fitbit every day
and why I have resisted fromgetting one of those rings,
because I know that I will gooff the deep end.
So I mean, I know that you'rewatching, like your heart rate
variability and all that, buthow do you find the balance
(29:11):
between staying physically fit,working out as much as you want
to, but then not likeoverstressing your body,
especially now that you have anewborn at home?
Speaker 3 (29:20):
You know, I had always put so much pressure on
myself and I'm learning to givemyself grace.
That is a new concept for methat I had to kind of, I think,
develop through having Crohn'sis give yourself grace.
I remember when I was sick andI was unable to do a lot of
things.
I was doing everything veryslowly when I was in a flare-up
(29:40):
but I got so much more donebecause I was going at a slow
pace and I wasn't rushing andpushing myself.
So like I feel like that has alot to do with the fact that
like I need to take things slow,like balance for me looks like
not pushing myself to an extremeand taking pausing the workout
video I have, taking a few morebreaths and not saying I have to
(30:01):
do this, start to finishperfectly.
That's my problem.
I'm a perfectionist and I thinkwhen you set that expectation on
yourself of like being aperfectionist, that's stressful
and stress is such a hugecomponent of this disease.
If I just take it back and say,like I don't have to do this
perfectly, I'm going to do thebest of my ability today.
Maybe my perfect today is 60%of what I can give and that's my
(30:21):
perfect for today and beingokay with that.
That just takes a lot ofevolution and growth, like.
But I feel like I've gotten toa point where I have to enjoy
the journey more than thedestination, and I know that
sounds so cliche, but like it'sthe truth.
Like I was always trying toattain that perfect physique
that I wanted to attain and nowI'm just like I want to work out
because I enjoy movement for mybody.
(30:44):
That's really helped me a lot,because before it was to attain
a certain look and now it's toattain a certain feeling of joy
that I can move and actually dosomething with my body, whereas
when I'm in a flare up, I can't.
You know, I it's a newperspective, it's it's.
It's a new perspective andthat's, I think, how you gain
that balance with working out.
You have to look at working outin a different way, as just
(31:05):
attaining a goal.
It's more than that.
It's.
It's about appreciating thefact that you can do what you're
doing.
You know, that's what I thinkis going to help people most if
they are people who work outlike me is just changing that
point of view a little bit.
Speaker 2 (31:18):
No, that's a very, very lovely way to say that.
It's a paradigm shift.
I try to be grateful for thingsthat my body can do, and I have
a really hard time with that.
I say I'm a recoveringperfectionist.
My mantra is done is betterthan perfect, but sometimes I
have to convince myself thatthat's the truth.
(31:40):
Right, I have way too manysarcastic and dark jokes about
my butt trying to kill me.
So I mean, but the way that yousaid that, like it was
inspiring to me.
I'm like okay, I need to lookat this from a different
perspective too.
Speaker 3 (31:56):
Yeah, it's taken a long time to get there.
I mean, I remember still goingthrough flare upsups and or
starting to get going, startingto have flare-up symptoms and be
like, damn it, I really want tofinish this, this workout
program that I'm doing, and Iwant to finish it.
And you know I'm I'm justcomplaining, you know, about it,
to my husband or whoever.
And the reality is like what'smore important you finishing
(32:16):
this workout program or you like, feeling healthy?
Like the whole point of workingout is to feel healthy, not to.
You know, and we lose thatperspective as people who are,
you know, work out a lot is thatwe just look at it as, oh, I
want to get this done, I want tolook this way, I want to
achieve this goal.
What about where's the healthcomponent?
Fitness and health are not thesame thing, you know.
(32:36):
It's like being fit isdifferent than having a very
healthy body.
My body isn't always veryhealthy.
I might look fit sometimes, butmy body struggles.
So I try to focus more on whatam I going to do today to make
me feel healthy?
Tomorrow I'm taking a rest day.
Actually, my program told meI'm not supposed to take a rest
day tomorrow.
I have a schedule for adifferent day, but I'm like you
know what, I don't feel up forit, so I'm just not going to do
(32:58):
it.
And the old me would have beenso upset with myself and
whatever.
And the reality is, what am Iputting this pressure on myself
for?
Why?
Where did that come from at ayoung age?
Why Nobody put pressure on me?
It's strange.
I think a lot of us do that.
But that's not why we're here.
We're not here to put pressureon ourselves.
(33:19):
To be a certain way.
We're supposed to enjoy whatwe're doing.
That's the whole purpose.
Speaker 1 (33:24):
It's such a hard thing to do, though, I think for
everybody not just peopleliving with inflammatory bowel
disease, but just everybody it'slike just living our lives,
striving, striving, striving.
That's kind of the Americanculture, frankly.
Speaker 2 (33:35):
I was about to say it's American, it is uniquely
American.
Speaker 1 (33:41):
Yeah, but I'm glad that you're recognizing it.
I'm glad that you're startingto connect the dots between the
two.
And I wanted to circle back onsomething you said about heart
rate variability.
It's interesting you say thatbecause there is research that
shows that heart ratevariability is something that
can help people figure out ifthey're having a flare.
We had Josie McGarva talkedabout that on her episode,
didn't she?
Speaker 3 (34:06):
Robin, and so did Tiffany Taft.
I thought I was the one thatfigured this out.
I thought I was the one thatwas going to figure this out.
I would call my dad or call mymom or call my husband, call a
friend and be like my heart ratevariability is really low.
I think I'm flaring up myhusband's like it's just for
watch I go.
No, I'm not.
There's research.
There is research.
Thank you, because I feel likeI needed that validation for
such a long time around thatconcept.
(34:26):
That's been an irritatingsituation with people.
But yeah, I think so, and Iknow heart rate for sure.
Mine increases when I'm in aflare up, maybe seven or eight
beats more than what it normallyis at rest seven or eight beats
more than what it normally isat rest.
You know it's very interesting.
But now that I know that, Iwish I had some tools to help me
(34:47):
when it is a low heart ratevariability, like how can I
increase that?
Cold plunge seem to have helped, or cold exposure, I should say
seem to have helped that oneday.
But is there anything else Ican do?
Like that's a question that I'mlike.
I go online, I research a lotabout this kind of stuff too,
and I'm like that.
I'm like I go online, Iresearch a lot about this kind
of stuff too, and I'm like,maybe this I'm thinking the
(35:08):
vagus nerve has a lot to do withmy disease as well Like that
rest and digest state right,like so I don't think I'm always
in rest and digest, like mostpeople are.
My husband likes to say to meyou need to turn your brain off.
I'm like oh, I don't know howto do that.
Like how do you do that?
How do you turn your brain off?
Speaker 2 (35:21):
I think most people can do that this is not the
group right here, this audienceright here, the three of us.
We cannot.
Alicia and I are not the twopeople to answer that question
for you.
Speaker 3 (35:30):
I can't turn my brain off.
I don't know.
Even when I'm like resting, I'mthinking about something and
it's like I need to learn how tomeditate better.
I used to do it in 2020.
I made a commitment after that,during that flare up, to get me
out of that.
I was meditating every nightand I did it for like almost a
year every night.
After that it's great.
And then, of course, life getsinvolved and then I just lose
(35:53):
track of doing those things.
But that that seemed to havehelped for a while.
Yeah, man, there's just.
I just wish I had some moreinformation about what to do
with heart rate variability whenit's low, Because if I could
figure out a way to keep that up, I have a feeling that I won't
be flaring up.
That's just what I've seen.
But I also was battling withthis chicken or the egg.
(36:13):
Is my heart rate changingcausing my Crohn's disease, or
is my Crohn's disease causing myheart rate variability to
change?
I don't really know that either.
Like, I don't think that it's aheart issue that I have, but I
think that is something wrongwith my autonomic nervous system
that is causing my Crohn'sdisease or autonomic nervous
(36:34):
system to be, you know, off.
I don't know.
You know that's something I'vethought about too.
Speaker 1 (36:38):
So having a baby, a super, super tiny, tiny baby
that definitely contributes toall of the other stuff too.
When you're so exhausted you'renot meditating because you're
like I just put the baby downand now I'm so tired, kind of
thing, and so I'm sure that haschanged things.
You haven't necessarily noticedthe stress of being a new mom
contributing to any symptoms, orhow has that worked for you.
Speaker 3 (36:59):
Jason has been a very good, easy baby so far, like in
general, sleeping wise.
He's given me some really greatspurts, like ever since three
months he's been pretty muchsleeping Like from nine.
I go to bed with him, I put himin his crib at like nine and he
wakes up like seven, six, 30.
It's been awesome.
So I cannot complain.
(37:19):
I can't with that.
But yeah, I mean there'sthere's been a couple of nights
where he you know he'll wake up,but he's pretty easy.
I think I've had a lot of timeto prepare, unfortunately,
because I had gone through a fewmiscarriages.
I really prepared myselfmentally for having a baby.
We had gotten pregnant reallysoon after trying and I was like
whoa, like I was really scared,you know cause I didn't know if
I was really ready.
You know, I was just all thethoughts and everything and you
(37:41):
know what.
I had a lot of time to prepare,so I knew how hard it was going
to be, but it's been such a joy.
I really focus on gratitude, youknow.
Gratitude has been such a hugething for me in my life and just
like with him, even thoughthings can be hard, I look at
him and it's just like it's sucha blessing.
It's so hard for me to even beupset Like he has been a very
(38:04):
minimal stressor in my life, Ikid you not.
I know being a new mom is veryhard for a lot of people,
depending on the child, but forme it's been.
It's been a joy.
I mean, if anything, he'sdistracted me from myself, which
is me.
I'm the problem, you methinking about me is the problem
.
So he's distracted me from me.
That's been a huge help,because when I'm in my own head
about myself and my disease andit starts the anxiety, that's
(38:27):
when I'm in trouble.
When I can focus my energy onsomething else or someone else,
that's a safe spot for meactually.
Speaker 1 (38:34):
So this is my first time meeting you and hearing
your story, robin.
Does you get a chance to talkto all of our guests ahead of
time?
But I don't.
So brand new meeting you Justin our conversation.
You strike me as a planner andsomebody who does a lot of
research, and so I am verycurious about when you did
decide to start a family and youdecide to start your pregnancy
journey.
What research did you do onthis?
(38:55):
Because I know some people arepretty intimidated by taking a
biologic while they're pregnant,things like that.
So talk a little bit about just.
You know, how did you getyourself comfortable and
prepared in order to even startthis?
Speaker 3 (39:05):
I follow a few people on Instagram that are very big
in the IBD community.
I don't know if I should saythe names or not, but Natalie is
one of them.
Natalie Hayden, she's wonderful, oh my God.
God bless her heart.
She's one of the best women andI actually she lives in the
Chicagoland area as well, sowe've connected anyways, and she
she's on Humira and she hadgone through some things with
her Humira and I felt my heartwent out to her.
(39:26):
So, anyways, I was talking toher about it and I asked her
cause she has three kids and shesaid it was very safe.
She gave me some research tolook at as well.
My dad said Humira is safe tobe on during pregnancy after
looking at research that he didas well, and so, um, you know
what?
I just trusted the doctors, Ididn't think too much about it.
I, my pregnancy was pretty good,like the first seven months.
(39:47):
I was fine.
It was just again that July,august, I'm telling you
seasonally, that's not a goodseason for me.
That heat, I don't know what itis about that summer heat.
I go for walks and my heartrate stays elevated.
After working out, I'll go fora walk.
It's just too much, likethere's too much heat for me, I
think, and I my body doesn'tknow how to respond to it
properly.
And yeah, that's, I thinkthat's why I flared up.
(40:10):
I remember it had started rightbefore moving into this house
that that was a stressor, though, so that was that could have
contributed.
The moving was was, yeah, verystressful because we had so much
crap to move and everything.
Speaker 1 (40:22):
Yeah, moving is for the birds.
I've done it too many times,robin has also done it too many
times and, yeah, it's just awful, I think that might have
contributed to it.
Speaker 3 (40:31):
But I was pregnant, I was kind of hormonal and the
flare-up kind of started.
I think I said this the 32ndweek of my pregnancy and then
when I looked at some chartonline, that was when like a
huge hormonal shift happensduring pregnancy.
Can't remember exactly what,but I do remember seeing that
like some hormone drops at thattime, the 32nd week.
(40:53):
So I don't know if estrogen,progesterone, all those things
play a factor in IBD or not, butI do know that I thought that
was quite interesting that thatthat is when I started to have
those those symptoms too.
So I don't know.
Speaker 1 (41:07):
I have to fully admit that I don't think I could have
my dad as a gastroenterologistand giving me scopes.
So I am genuinely curious abouthow your choice to be with your
dad like I get it, like I thinkit's like it's.
You know you have a lot ofcomfort with this person.
This person changed yourdiapers at some point, but also
now you're a grown person.
So talk a little bit abouthaving a family member as your
(41:29):
GI.
Speaker 3 (41:29):
Yeah, of course he does this for a living.
So I just was telling myself,this is my dad, my doctor, he
does this for a living.
He's, you know, he's helpingpeople.
He's going to give me the bestcare that he can.
And I was in so much pain thatI was like, whatever, I just
(41:50):
want to figure out what's goingon at this point, you know.
So you know I've gotten over it.
Like, all of our family membersgo to him for gops.
You know, I'm like I'm justanother family member.
Like that's the reality.
If you have a GI doctor in yourfamily, like yeah, you're
probably going to use thatperson to.
You know, if he's he'sconsidered to be a pretty good
doctor in the area like you'regoing to go to him.
(42:10):
You know I would have gone tohim if I was having issues with
my, with my stomach, when I wasa kid.
I would have like there's noquestion.
But now you know that I'vegotten older, I do wonder, like,
what it would be like if I wentto somebody that specialized
primarily in IBD rather than agastroenterologist.
That's something to explorepossibly in the future, like.
But you know, I just feel likeit's.
(42:31):
It's not as embarrassing as Ithought it would be, but I just
feel like I've gotten over itagain.
When you're in that much pain,you don't care who's helping you
or what's going on.
Speaker 1 (42:40):
Well, and if it's your family member, chances are
that you you might be able toget seen faster, because it's
like well, it's my dad, my dad'sgoing to fit me in, right?
Speaker 3 (42:49):
Thanks, you know, come on, hurry up.
It's a blessing.
It really is a blessing becauseI was able to get diagnosed so
fast.
I was diagnosed within threeweeks.
I mean, some people go yearswithout being diagnosed.
My dad's like, okay, you keeppersisting that it's not beats,
that you're eating, we'll scopeyou, but I'm sure you're fine.
And I'm like, no, I'm in painand like I would have never
asked that, like you know.
But so, yeah, they did an upperand a lower and they figured
(43:12):
out.
He saw the inflammation in mysigmoid colon and how bad it was
.
And he's like you know, to somepeople he's like, yeah,
andrew's got one of the worstcases of Crohn's I've seen in
like 20 years.
And I'm like, oh really, younever told me that what he's
like.
He's like, well, I'm, you know,you're my, you're my daughter.
(43:35):
I'm not going to tell you that.
But yeah, it's pretty bad whenyou're in a flare up where it's
like he's trying to do the besthe can, but at the same time I'm
his daughter, so it's hard forhim too.
It's a struggle.
It's a struggle for both of us.
Speaker 1 (43:48):
I think I do.
I feel like I have to ask thisquestion.
But, like, are you a veryfrequent beet eater family?
Like, why did the beets keepcoming up?
Speaker 3 (43:58):
He could not believe that I had Crohn's, like he
couldn't believe that I wasbleeding.
He was just like there's no way, we don't have that in our
family, like there's no way, youknow.
And so, yeah, he just keptinsisting that it must've been
something.
I was eating Tomatoes, ketchup,beets, whatever.
Yeah, the beets thing I stillbring up to him when I call him.
Speaker 2 (44:17):
But If you've had blood in your stool, you can
tell the difference betweenblood and something you've eaten
.
Speaker 1 (44:23):
Oh yeah, I mean, I'm just saying I mean also, don't
you like not just have blood,but oftentimes there's like
mucus and other things too, likeit isn't just, like there's
other signs.
Speaker 3 (44:35):
So this was like my first flare up when that
happened, so like it was justmore like I couldn't tell Like
now I look at my poop every timeI go, like every person with
IBD, and I give my husband ahigh five.
When it's solid, I swear I'llbe, like I'll come out of the
bathroom Like it was a good one.
You know, it was a great poop.
Like I didn't even have to wipe.
(44:55):
It's like that's awesome.
And then there's other dayswhere I'm like oh my God, I
think I'm flaring like justhaving a little bit more
diarrhea.
Sometimes it's more just likediarrhea.
Other times it's more just likethere is some mucus sometimes.
But for me it's like when I'min the flare up it's basically
like I'm pooping blood, likethat's pretty much it.
It's bad.
Speaker 2 (45:13):
I will tell you that a positive note potty training
so much easier as somebody whohas to go to the bathroom more
often.
Speaker 3 (45:27):
When I'm not in a flare up I don't have.
I go once a day when I'm not ina flare up, and when I'm in a
flare up I go 17 times a day.
It's like crazy how my body cango from just being a normal
body to when I'm in a flare up,having to go so often, you know,
and the urgency, which is a newsymptom that I just got in the
last couple of years.
I used to never have urgency.
The first five years of mydisease didn't really have
urgency to go during a flare-up.
Now, yeah, I've had accidents.
I've never had accidents before, but that's something I had to
(45:49):
deal with the last few years.
Speaker 1 (45:51):
So, yes, I think it's really wonderful that your dad
is there to be such a fantastichelp for you and such an amazing
resource and to really like.
You know nobody's going to carefor you like your dad.
But you know when you havesomebody who's saying the most
that he's the most complicatedcase of Crohn's he's ever seen,
(46:12):
I definitely understand why youmight be considering talking to
somebody else, you know, just toget a second opinion.
Speaker 3 (46:17):
Yeah, definitely.
I mean, when I heard that whenwe were out with family, I'm
like were you exaggerating, youknow?
I took him aside and he's likeno, he's like you have a pretty
bad case.
And you know it's hard, it'shard for me to be serious with
my dad.
We have, we have, a jokingrelationship, you know.
And so, all jokes aside, he waslike yeah, you have a pretty.
(46:41):
Not, there is more informationout there.
Speaker 2 (46:44):
There's a lot of options and different approaches
now and research is literally.
Every single conference, newresearch is being presented and
they're trying new things inclinic and there's new clinical
guide.
Like I just if it's notsomebody who sees only IBD like
I, can't tell you the number ofspecialists that I have heard,
(47:06):
either on our show or at patienteducation or at professional
education, that have said ifyou've seen one IBD patient,
you've seen one IBD patient andso, like even Dr Marla Dubinsky
said, you know, if I seesomebody and I've never seen it
before, I don't automaticallydiscount them.
I'm like, oh well, this issomething I haven't seen before.
Let's dive in.
(47:26):
Because every single personwith IBD it's different for
everybody, because our bodiesare different, the way that we
metabolize stuff is different,our hormones, like everything,
is different for every singleperson.
When I went to see somebody,from a regular GI to somebody
who only saw IBD which was in2018, mind you, I did not see an
(47:48):
IBD specialist before 2018.
And I could kick myself in thebutt every day.
It was a relief when I said,well, my doctor said that this
is not for my Crohn's and she'slike I mean for my IBD, and
she's like it is.
And I was like, oh, I had thisand I have this.
And she's like that's it too,that's it too.
And so you know, it was justlike I'm not crazy, I'm not
normalizing my symptoms.
(48:09):
Like it just made me feeljustified, something new, that
brand new, which is why I'mconsidering a second opinion
right now and I go to the IBDclinic at Mayo.
Because of my age I'm 50 and I'min that perimenopause,
menopause stuff I started havinghot flashes and night sweats
and so when I was talking tosomebody who was not my GI, who
(48:29):
knows that I'm having nightsweats, I was like, oh, blah,
blah, blah.
I started seeing a registereddietician because of my symptoms
and I'm like, if my doctor'snot going to help me, I have to
do something to try to go to thebathroom less frequently, like
I'm going to start seeing mydietician again.
And she was asking me she goesokay, you've given me all your
crown symptoms.
Now, out of all of yourperimenopause symptoms, what's
the one that's bothering you themost?
And maybe we can address thatone too.
(48:50):
And I said night sweats.
Like I'm going to the bathroomthree, four, five times a night
and then I'm also waking up withnight sweats.
And she said, robin, nightsweats is an indicator of IBD
active disease.
And I said I'd never heard thatbefore.
I'm like what are you talkingabout?
And she's like she did work atCedars and she's like that's one
of their intake questions whenthey're seeing new patients is
(49:12):
do you have night sweats?
She's like that is an indicator.
Speaker 3 (49:15):
And I'm like.
Speaker 2 (49:15):
I'm going to Mayo and I told them that and they
didn't even say that to me, youknow.
Speaker 3 (49:19):
So it's like that makes me wonder because the day
before my period I get nightsweats so badly that I have to
change out of my clothes in themiddle of the night because I'm
sweating.
But I think that has to do morewith hormones.
I don't know.
Speaker 2 (49:32):
I think hormones have played a bigger role in women's
players than anybody knows yet.
Speaker 3 (49:37):
I think so as well.
I mean, that makes sense to me.
Speaker 2 (49:43):
Angie, thank you so much for coming on the show and
sharing your journey with us andsharing your life with us, but
it is time for me to ask you thelast question, and that is what
do you want the IBD communityto know?
Speaker 3 (49:54):
So for me, I just want people in the IBD community
to know that, although Crohn'scomes with lots of challenges
physically, emotionally,mentally it's has afforded me,
and it can afford you to, a lotof opportunities to help other
people by, like, just sharingyour story and reaching out and
sharing your experiences withCrohn's or ulcerative colitis.
(50:15):
It's given me a lot ofopportunities to share and to
get to know people, to learnabout what works for them, what
doesn't work for them, and tojust spread hope in my God.
That's the thing for me is it'sgiven me an opportunity to rely
more on my God, and I believethat sometimes we're given
things that are hard so that wecan use that as an opportunity
(50:36):
to strengthen our faith in God.
That's true, that's what Ibelieve in my heart.
So sometimes, when I'm upsetthat I have this, I think about
it as an opportunity to havemore faith in him, that he will
help me through this.
And you know what I've gonethrough every flare up that I've
gone through it's been hard,there's been challenges that
come from it, but it's given mean opportunity to become more
(50:56):
spiritual, to become moreconnected with something that I
might've not chosen to beconnected with had I not been
diagnosed.
You know what?
It's a hard thing, but it'sgiven me a beautiful life, with
people in it that support me,and a stronger faith, and that's
what for me I believe I'm putup here on earth is to be closer
to God and to help people, andmaybe by sharing my story I can
(51:17):
help somebody.
Speaker 2 (51:18):
Thank, you so much.
You're going to help so manypeople with just sharing your
story so openly.
Speaker 1 (51:23):
Absolutely.
Thank you so much, angie.
It was such a pleasure to getto know your story and get to
know you, and so we reallyappreciate you being so open and
honest with us, and thank youso much for sharing with us.
Thank you everybody else forjoining us and cheers, everybody
, cheers.
Speaker 3 (51:37):
Thank you, hi.
This is Angie.
If you enjoyed this episode,please rate, review, subscribe
and share with your friends.
Hi, I'm Alicia and I'm Robin, and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week, we talked to Angie V.
Angie was diagnosed withCrohn's disease in 2017.
We talked to her about theresearch that she's done to try
to figure out why she may havebeen diagnosed with Crohn's
(00:21):
disease when she doesn't have afamily history.
We talked to her about how sheuses her Apple Watch to try to
track some things that may beimpacting her disease and her
symptoms, including things likeheart rate variability and
others.
We talked to her about herpregnancy and what she did to
stay healthy and safe during herpregnancy, including when she
had a flare, and we talked toher about what it's like to have
her dad as hergastroenterologist and the pros
(00:42):
and cons of having a familymember who's helping you track
your disease that closely.
I think you'll enjoy the storyas much as we did.
Cheers.
Speaker 2 (00:53):
Hi everybody, Welcome to Vow Moments.
This is Robin.
Speaker 1 (00:57):
Hey everyone, this is Alicia and we are so excited to
be joined by Angie.
Angie, welcome to the show.
Hi, thank you for having me.
We are excited to hear yourstory in just a second, but our
first, very unprofessionalquestion is what are you
drinking?
Speaker 3 (01:09):
I'm actually having a decaf coffee right now.
I try to limit the caffeineafter a certain time, but that's
kind of what I'm drinking atthe moment.
Speaker 1 (01:16):
I understand this one very much, especially for me it
was like hit 40.
And then it was like if youcan't have caffeine after, at
least in my case I Like if youcan't have caffeine after, at
least in my case I stop at noon.
That's like a hard stop for me,because otherwise I just like
good luck.
Speaker 3 (01:28):
Yeah, and I can't even touch cold brews anymore.
I don't know.
I think those are way toostrong for me.
Speaker 1 (01:32):
I don't know I wasn't a big cold brew fan, but now
I'm like, now I'm a little bitafraid of it.
So, okay, I will try to stayaway from it.
Speaker 3 (01:40):
Last time I had one, it sent me into a panic attack,
which is crazy.
Oh no, oh my gosh, very weird Inever had a caffeine problem
until probably the last fewyears, and then I love caffeine,
so that was just very sad.
For me it was a sad moment.
Speaker 1 (01:56):
Robin, what are you?
Speaker 2 (01:56):
drinking.
I can drink caffeine until thewee hours of the day and often
do self-medicating, but today itis chilly and I'm having hot
chocolate oh, that's awesome.
And also water, leisha what areyou drinking?
Speaker 1 (02:12):
I'm having tea today, but I also, just in honor of
the other happenings today, I amdrinking a glass of wine as
well.
So I'm drinking some lovelyZinfandel from the Fontanella
family winery.
Cheers, guys, cheers, cheers.
Okay, Angie, all right, nextquestion for you Tell us your
IBD story.
What brings you into ourcommunity so?
Speaker 3 (02:32):
I was diagnosed with Crohn's in 2017, but I had some
signs leading up to that priorto the diagnosis.
It was December of 2017.
So I'd like to go back a littlebit, because I think
environmental factors have a lotto do with Crohn's, but I also
think there is geneticcomponents to it.
I think it's just like a mixFor me personally.
I've tried to figure this out.
I'm sure as many people whohave Crohn's or ulcerative
(02:54):
colitis would try to figure thisout.
Why do we have this?
I just think it's a perfectstorm of events environmentally
and genetic.
That kind of contributes to justchaos within the body.
So I was in 2016,.
I really I was really focusedon my relationship with somebody
that I was seeing at the timeand there was some.
There was some issues there.
(03:15):
We had been seeing each otherfor two or three years at that
time and I was really stressedin the relationship.
I find out I found out in 2016,that there was some infidelity
going on and I just kind of likereally turned to alcohol and I
was drinking a lot, and that waseven before like dating him.
I was a heavy drinker.
I would party in college and Iwould drink all the time.
(03:36):
But I started to use it to kindof self-medicate through like
some of these things.
So you know, I didn't want tofeel the stress and I think
stress is a huge thing that goeswith Crohn's so I was drinking
a lot, I had some family issuesgoing on and just the stress of
all that.
I just wanted it to go away.
So I kind of used alcohol for along time.
But once I found out that my exwas cheating on me, I decided
(03:58):
to kind of just move forwardfrom that relationship and just
kind of commit to a healthierlifestyle of fitness and working
out and I completely cut outalcohol, which was great for my
body and everything.
But I feel like that's kind ofweird because that's when my
symptoms started.
It's when I stopped drinkingand I think it's because I
self-medicated so much withdrinking that it kind of shut
(04:19):
down a lot of that, the symptomsthat I would have had.
But when I didn't have anoutlet for stress, I think that
my body kind of didn't know whatto do.
You know that was 2016.
I ended up actually gettingback together with the same
person for another whole year.
We moved in together, same sortof thing was still going on and
I just couldn't trust him and Iended up leaving and moving
(04:39):
home at the age of 29.
And I was like, oh my God, Ican't believe I'm moving back
home.
And it was just.
I was really, really upset atthe time, just having to kind of
start over, and you know, hewas a lot older than I was, so I
thought this was going to bethe person that I was going to
be with and I was just goingthrough so much stress.
But before I ended up movingout after a month of living with
him in 2017, I'd lived with himjust about a month I had really
(05:04):
bad psoriasis, like all over myhands within that first month
of moving in and I never hadpsoriasis before and I went to
my dermatologist and she gave meOtedla didn't work for me, but
I did.
I did look up that there is aconnection to like skin issues
with Crohn's disease and thingslike that.
So I thought, well, that couldhave been like a telltale sign
(05:25):
prior to the diagnosis too.
Growing up, I had eczema, so Ialways had skin issues, so I
thought it maybe was eczema, butthen it was diagnosed with
psoriasis and it kind of wentaway after about a month.
That year that I moved in withhim was the same year that I
started teaching for the firsttime within my own classroom.
Another stressful event, sostress of living with him,
stressful event of teaching,having psoriasis, and just I was
(05:48):
really really exercising a lotbecause I had turned away from
that lifestyle that I had, youknow, used to have and I kind of
just moved towards a healthierlifestyle, fitness.
So I would get up at 4.30 inthe morning, I would work out, I
would come home, I would bewith the dog, I would, you know,
make dinner for him and me, andthen I would go to bed and I
(06:10):
was, I was exhausted.
I mean, it was going fromliving at home and kind of doing
my own thing and seeing myboyfriend on occasion to living
with him, having my ownclassroom.
It just it was veryoverwhelming and just such a
short amount of time and I don'tthink my body kind of knew how
to handle it.
So the psoriasis kind of wentaway.
That was October and Novemberof 2017.
And then, in December of 2017, Istarted having some.
I started to notice like I wasreally leaning out, like really
(06:32):
leaning out, and I wasn't evenlike trying to.
It didn't connect with me thatevery morning I would go to the
gym and I would take mypre-workout and I would use the
bathroom within like 15 secondsof taking my pre-workout.
And I look back, I'm like Istarted pre-workout in 2017.
And whatever's in some of thepre-workouts I was using a
(06:55):
company's pre-workout that haslike lots of different stuff in
there that I can't even read theingredients on.
So I don't even know.
You know, but I knew that Iwanted to, you know, to use
pre-workout because I wanted toget stronger and I wanted the
extra support.
Looking back, like I wish Inever took it, because I do
think that that had something todo with just speeding things up
in my system.
So I would get up early, hitmyself with pre-workout right
(07:16):
away.
I would use the bathroom likeliterally within 15 seconds of
drinking it and then go do myworkout and I thought that was
normal.
I was like, well, maybe it'sjust the pre-workout kicking in
and whatever.
And then, as time went on, inNovember, it started to be like
I started to notice that therewas maybe some blood in my stool
and I didn't understand, likehow that could happen.
I was like did I eat beets orsomething.
(07:36):
I would call my dad up becausehe's the gastroenterologist and
I'd be like, hey, I just go intothe bathroom a lot more and
like it's, I think I see likeredness, I haven't had any beats
.
He's constantly asking me ifI've eaten beats.
That was like the inside jokebetween us for like ever.
I'm like no, I haven't touchedanything red Like I don't.
You know so.
And I started to have this dullache in my lower left side and
(07:57):
my disease is active in mysigmoid colon.
So that's like where most of myissues come from.
But yeah, so I was starting tohave a lot of pain and he's like
All right, you know what?
Fine, he just wanted to kind ofshut me up.
He's like Fine, we'll just.
We'll just scope you, we'll seewhat's wrong.
I'm sure you're fine because itdoesn't run in our family or
anything.
And that was a very mild flareup for me.
(08:27):
That my first one.
We were able to like nip it inthe bud with like just a prezo
and Imuran is all I took.
I didn't take a steroid at thatat that time.
I think, coupled with the factthat like I took those two
things, though, like my immunesystem started to get suppressed
from those drugs.
I started to get colds muchmore frequently after being on
(08:47):
some of those medications andthen, you know, I was diagnosed
while I was still living with myex, so that was really
stressful.
And then I found out some moreinformation about the
relationship that I didn'treally want to find out and that
really set me over the edge,and that's when I moved out.
That was when I was in one ofmy biggest flare ups.
That was in July of 2018.
And I would have beenhospitalized had I not had my
(09:09):
dad, but I moved back home.
So he's like there's no waywe're going to put you in a
hospital.
I can bring you the anythingyou need.
You know IV, you can hook it upat home medications and
everything.
So I'm grateful, but some partof me kind of wanted to be in
the hospital so that I couldjust feel like I was physically
getting the care from everybody.
That I did because I just feltso overwhelmed.
(09:31):
I've never experienced pain likethat in my entire life and I
still to this day.
There's nothing that's been aspainful as being in an active
flare up.
Even the C-section I had withmy four month old four months
ago, I would, I would go through.
I told my husband he's like,how was it?
I was like, well, I would gothrough a C-section every month
for the rest of my life.
Literally, I literally would.
(09:51):
It meant that I would neverflare up again.
I would literally do that.
It's crazy, the amount of painthat you can be in from a flare
up.
Yeah, so we were trying to getit under control with
medications in 2018.
I took Euceris and that helpeda lot.
It took about four weeks for meto get out of it completely,
right before the school yearstarted.
(10:11):
So I was able to start mysecond year of teaching.
That year was great.
I met my now husband, who I'vebeen with for almost seven years
, and it was, you know, it waspretty wild.
Like everything kind of workedout Like I would have never
applied for this new job a new.
It was pretty wild, like likeeverything kind of worked out
Like I would have never appliedfor this new job a new teaching
job that I got, had my ex notbeen doing things behind my back
(10:32):
.
I kind of wanted a fresh start.
So I, you know, I applied for anew job.
I got a new job.
My coworker there is actuallyintroduced me to my husband.
She met him and she's like Ithink I have somebody for you at
the gym.
So she went up to him and sheasked him like if he was seeing
anybody.
And he was like no, like whoare you, by the way?
(10:53):
Like I don't really know you.
And then you know we ended upmeeting on a blind date and
we've been together ever sinceand.
But I find that funny becausethe bad things that happen in my
life, like things that happenedwith my ex cheating, and all of
that ended up leading me down aroad that actually is beautiful
now and like I love the lifethat I have today.
You know, despite that, like Iwas able to kind of just meet
new people through this new job,meet my husband, and he's able
(11:14):
to be somebody that actually canhandle my disease.
My ex was not.
He felt he didn't know what wasgoing on, but he was not
supportive at all and my husbandhas been very supportive with
it.
Like it just it makes sense,like things end up happening and
then I feel like it all comesout to be the way it's supposed
to be, you know.
So I've been with my husbandnow for seven years.
He's seen me through flare-upstoo, so that was in 2018.
(11:36):
I met him.
I didn't have a flare-up againuntil like 2020.
There were little bouts of likeissues that I was possibly
flaring up.
We would kind of hit me with alittle bit of some steroids and
then I'd kind of go back into aremission state for a while.
It wasn't until COVID that Iended up getting into a major
flare up.
I think it has a lot to do withthe fact that in 2020, I
(12:00):
because I had so much more time,like Zoom, being at home and
teaching.
It was very stressful, but Ialso had more time at home.
So my parents have some weeksand I was just working out more.
I was outside more because Ihad more time at home.
I can go for a walk and I thinkI was kind of overdoing it again
.
I have a tendency to kind ofoverdo it physically and so,
yeah, I was pushing myself.
(12:20):
Over the summer School yearcame, I had been lifting pretty
heavy and like pushing myselfand I think I think that that
does have to do with with my, mydisease when I overdo it with
physical exertion and stressjust stress on the body in
general, maybe not taking enoughrest days or whatever.
But yeah, so I ended up flaringup after going to an apple
orchard which I say because Imet somebody in Mexico on a
(12:42):
vacation who has Crohn's and waslike I can't eat apples.
And I'm like really, that's sofunny.
You say that I go because mymajor flare up that I was in
happened right after I went toan apple orchard and I took a
bite of an apple from the treeand I had never, ever done that.
I usually go to a grocery storebuy an apple.
But yeah, I kind of connectedthe dots.
It was after we had bakedsomething with the apples and I
(13:04):
had a couple apples from theapple orchard that the skin on
the apples probably sent me intoa flare up.
I was probably already like onmy way there, but I think it
sent me over the edge and thatwas the worst flare up I have
ever been in in 2020.
I'm 5'4", so I went from being135 pounds to 107 within three
(13:25):
weeks and it was like I couldn'tkeep anything in.
I was in physical pain.
I just couldn't go anywhere.
I couldn't do anything.
I was sleeping on the floor inmy living room because I
couldn't make it to the bedroom.
You know it was the worst painI had ever been in and I had my
husband there and his dad cameover to help out with the dogs
and it was very supportive.
(13:45):
So I'm like so grateful for thesupport system that I have, but
that was really challenging.
I ended up getting out of thatusing Euceris again.
It took a while to kick in, butI think, well, actually, let's
let me back that up.
Actually, I think it wasactually Predazone that we did
for the first time, because Ihad gotten to a point where
Euceris wasn't working correctlyand I think prednisone was
(14:07):
stronger.
I developed moon face, so theyhad to kind of I don't know if
you guys I mean, I'm sure you'veheard of moon face before but
like yeah, so my face was hugeand like I guess that's my dad's
like we got to get you off ofthis.
You've been on it for almost, Ithink, over a month.
I was on like 65, 70 milligramsof prednisone.
It was horrible, and then weended up weaning off of
(14:29):
prednisone and kind of going onto Euceris.
I started to kind of flare upagain in 2021 after going to
Euceris in like March, andthat's when I did like we have
to try a biologic now, like wecan't just give you medications
like these, just the steroidslike that.
So then I you know quickly andI know I'm very fortunate
because a lot of people strugglewith getting on the right
(14:51):
medication and getting the rightmedication quickly I went to
Humira within about a month.
My mom works at my dad's officeso she was able to talk to the
insurance companies.
I again very blessed for all ofthat, because I don't think my
parents realized how bad Crohn'swas until they saw that I had
it.
And now I'm sure my mom, whenshe sees patients coming in now
(15:14):
to the office, she's like I feelso bad for these people.
I understand now.
I didn't understand until youwere diagnosed.
So that was 2021.
I've been on Humira since then.
I'm still on Humira.
I've had to bump it up toweekly dosages instead of every
other week.
We did do every two weeks for awhile, but there were still
(15:34):
bouts of flare-ups.
I had one in 2023, june of 2023, after a colonoscopy.
Actually I think that kind ofsent me into a flare up, just
the pills that you take to kindof clean yourself out.
And then 2024, I thought that Iwas clear during my pregnancy.
I felt great most of mypregnancy and then all of a
(15:55):
sudden in July we ended upmoving into our new house and
the moving, coupled with theheat outside, coupled with
exercising, coupled beingpregnant all of that perfect
storm, I think, another flare upand that was the scariest one.
That was not the most painful.
It was pretty painful but itwasn't the.
It wasn't.
It was pretty painful still,but it was just scary because
the baby and I was just worriedabout him.
(16:17):
I was going for weeklyappointments and he got down to
like the first percentile withinlike.
It was like how many weeks wasthat?
It was probably like 33 weeks,34 weeks at that point and he
was like at the first percentilein weight.
They're like no, you know it'sokay.
And I'm like oh my God, it'sbecause I'm not retaining any
nutrients, like I'm just, I'mnot retaining anything.
(16:38):
So I was forcing myself to eatand like, have, like, ensure
drinks and do as much as I canand have as much protein shakes
and everything for the baby, asmuch as I could.
But every time I would eatsomething I'm like I know this
has to come out and it's goingto be so painful.
You know, it's just like it wasjust such a battle.
But Jason was fine.
I mean he was God willing.
I mean back on wood, he wasfine.
(17:00):
He ended up coming right at 39weeks and four days.
I had a C-section and heweighed six pounds, six ounces.
So he was still.
He was pretty solid weight.
I mean I think he was in the18th percentile when he was born
.
But I had gotten out of theflare up for like the last three
, four weeks.
I was only in the flare up forabout three, four weeks during
(17:21):
like week 32 to week 35 or 36.
So the fact that I got out ofit I think really helped him
gain some nutrition andeverything.
But yeah, I've gone throughquite a few flare-ups in the
last.
You know what, six years, sevenyears now that's been diagnosed
.
But I think that you know Iquestion whether or not Humira
is the best drug for me.
I bring that up to my dad allthe time because you know I'm
(17:42):
like should it be this way?
Should I still be having theseissues if I'm on a biologic?
Because even the last few daysI've been struggling with I
think I might be kind of gettingsome having some flare up
symptoms again and it's likeit's because I didn't take my
Humira.
I'm trying to move it to everynine or 10 days because I keep
(18:04):
getting sick because my immunesystem is so suppressed if I
take it weekly.
But then when I do that I starthaving some flare-up kind of
symptoms, not huge ones, but Ihave some telltale signs that
I've noticed.
When I flare up I get reallybad eye twitching Very strange,
but every time I've had aflare-up, one of my eyes starts
to really just twitch.
I think it's stress related,but that's it's.
(18:25):
It's something I've noticed.
I get these little red spotssometimes on my legs, which I've
I've read about that beforeJust telltale signs that I I
kind of just like know what itfeels like for me now, like if
my lower left side is hurting,it's probably not good for me,
you know like that's just I knowthat's where my disease is like
localized.
So I just I'm more sensitive toit and I use my Apple Watch a
(18:48):
lot to kind of help me.
And this is something I kind ofwanted to touch on because I
think it's really important ifyou have like a Fitbit or an
Apple Watch.
I have noticed a trend that hasbeen consistent every time I've
been in a flare up, and that ismy heart rate variability is
very low.
When I'm in a flare up and Ihave like the stats on here it's
like it goes down to the 20sand 30s average throughout the
(19:11):
day.
And when I'm not in a flare up,my heart rate variability is in
my 90s, 80s, 100, somethinglike that average throughout the
day.
And then the other thing I'venoticed the other trend is my
heart rate is.
You know, my heart rate isusually like 53 beats per minute
, 54, something like that.
(19:31):
When I'm in the flare up itgoes up to like an average of
like 63, 64 per day.
So it's significantly higherthan what it normally would be.
And that has been true everytime I've been in the flare up.
So I hate that I use my watch somuch to help me, but it really
has been a telltale sign for me,because people are like oh,
you're so obsessed with it, likeyou're so obsessed with your
(19:53):
watch, like, just you know, justlet it go.
My husband's like just let itgo, like you know what you're
going to be fine.
I'm like no, it's like my heartrate variability today is like
30.
I'm like I'm something'sstressing me out.
I don't know what it is, butyou know, like I've used it to
kind of help me know when totake a step back, like from
exercising and taking more restdays and things like that.
And I hope that helps somebody,because if I would have known
that before, I think that Icould have prevented some
(20:16):
flare-ups by just, you know,taking it down a notch a couple
of days before that.
You know, I saw those signs.
I hope that that helps someonedo it.
That's kind of where I'm atright now with my disease.
So I also want to add in that Ithink that seasonal Crohn's for
me is real.
I tend to flare up more in Julyand August than I do in other
(20:36):
months.
I not to say like that doesn'thappen, but the bad flare ups
I've had usually are like Augustish.
So I don't know, I think Ithink it has to do with the heat
.
Some of the things I'm doingnow to kind of help me that I
think are, have helped mebecause the medication's working
but I still have symptomssometimes.
(20:57):
So a couple of things that havebeen helping me.
This is kind of weird, but whenI put my son to sleep.
He's four months old.
I kind of chant and I do likean own chant and it really puts
my baggage nerve and everything.
My heart rate gets very low andI and it has helped me kind of
keep that low resting heart ratebecause I want to stay low,
(21:18):
cause I know that when it's highthat's a symptom that I'm
flaring up.
Cold exposure was another one.
This is kind of a funny story.
I went to the Bears-Packersgame.
My husband's a huge Packer fan,I'm a huge Bears fan.
I took him in early January andwe were out in the cold for
like three hours tailgating.
He loves it, it's like histhing, great.
And I cannot stand being cold.
(21:39):
I just hate it.
So we got club seats so I knew Iwasn't going to be cold for
that long.
I was just going to be outsidetailgating for a little bit and
I was like all right, I have theinside to look forward to soon.
And I got inside my you know Ihad been out in there for I'd
been out in the cold for threehours.
I got inside, I was sitting inmy chair and like I got a
notification on my watch that myheart rate had gotten really
(22:00):
low like 40s, 41, 42 beats perminute and it hits, reset my
like autonomic nervous systembecause the next day and the
days following, two, three daysfollowing, my heart rate
variability was so high and Ithought that was so interesting
and I felt great and I was like,wow, cold exposure.
(22:20):
I had always heard about it andI'm like I never have tried it
but that cold exposure, I think,really helped me get back to
like a good place, balancedplace, for my disease and so I'm
trying to go out in the coldbut I will do anything to not be
in that kind of pain, you knowdo we see cold plunges in your
future in the summer?
(22:40):
We talked about like getting one.
We have a basement, we have agym basement, we have like a
bunch of stuff down there gymequipment.
I'm like we should.
We should add that.
We should add that to the listof things you know.
I I don't know.
I do think it helps.
I didn't want to jump on thatbandwagon because so many people
were talking about cold plunges.
I've never done a cold punch,but just being out in the cold
really did.
My heart rate that day of thegame was like 127, which is
(23:03):
super high average.
It was like it was.
It was unheard of for me, likethat was the average for the day
, so that's something that'sbeen helpful.
I actually have been doinganother thing that I think helps
a lot of people.
Colostrum is, I don't know.
It's like a new.
A lot of people are doing this.
It's I think it's called firstmilk.
It offers a range of healthbenefits.
It's packed with proteins,antibodies and it supports the
(23:26):
immune system and the reasonthat I got it was because it was
.
It helps improve gut health andreduces inflammation and
promotes a balanced microbiomeand I was like, okay, I'm into
that, I can, I would love tohave a balanced microbiome.
So that was something I waslike.
I do that every morning I havesome colostrum and then I just
drink some water afterward.
But yeah, I think that'simportant to know that for me
(23:47):
also, besides the fact that I inmy early days of like before
getting diagnosed, another thingI had always, like I said, I
had always had eczema, but Ialso kind of I think I had a lot
of anxiety.
That was like undiagnosedgrowing up which a lot of people
I'm sure do and just very hardon myself and like the fact that
, like I would, I started tokind of have like restrictive
(24:08):
eating.
So like I definitely think thateating, disordered eating,
plays a part in my disease too.
I feel like today I don'tstruggle with disordered eating
anymore, but in my early 20s, inmy teens, I did so I was.
I think that plays a part in my, my chronic illness too, just
the fact that like I wouldrestrict, like I wouldn't eat as
many calories as I probablyshould, probably not eating the
(24:29):
correct things that I should andjust not giving myself a
balanced variety of nutrition ata young age.
And then I do vitamin D everyday, vitamin C and then a
prenatal and then elderberry,because that's supposed to help
with common colds and, like Itold you, I think I get sick
more often because I'm on Humiraso frequently that it has been
(24:49):
difficult for me to stay awayfrom getting the flu, getting
colds, strep throat, those kindsof things.
Speaker 1 (24:54):
We've talked to people that have gotten pregnant
before, but I think you're thefirst person we talked to that
has like gone into a flare whilebeing pregnant, so I would love
to talk a little bit more abouthow did your OB-GYN work with
your GI slash dad to make surethat they were managing this
together to try to keep you ashealthy as possible.
Speaker 3 (25:12):
Yeah, so I was seeing a high-risk doctor as well, and
so that was the one that I wasgoing to primarily, and he and
my dad did talk about what thebest solution would be at the
time.
They did not want me to be onsteroids during pregnancy
because that could have someeffects to the baby, so we just
amped up my Humira from beingevery two weeks to every week,
(25:36):
and that did kick in after abouttwo and a half weeks of being
in the flare up fully.
It was two and a half weeks ofhell, but it did kick in and it
did end up working.
That was what they did.
I was like I wished I couldhave taken some prednisone or
Euceris, knowing that that hashelped in the past, but that was
not the case.
I haven't taken prednisonesince 2020 now, which I'm very
(25:57):
grateful for.
But yeah, I know that that hasbeen the easiest way for me to
get out of flare-ups is justtaking a bow to steroids and
then tapering off.
Speaker 1 (26:05):
Gosh.
Yeah, that must have been soscary, though, because you're
doing everything right, you'redoing exactly what you need to
do to stay healthy and staypregnant, and then, all of a
sudden, something like thishappens.
Gosh, I'm sorry.
Speaker 3 (26:16):
Yeah, it was really challenging.
I have a very strong faith.
That played actually a reallybig role in my diagnosis with
Crohn's.
I did not know the severity ofCrohn's when I was diagnosed.
I thought, okay, like it's such, it's an illness, I guess I'll
deal with it.
It wasn't that bad the firsttime I flared up so I was like
okay, but although Crohn's hasbeen challenging, it's really
(26:37):
afforded me the opportunity tobecome more spiritually
connected and really rely on myGod, because I don't have
control over this as much as Iwant to and as much as all of us
want to have control over ourdiseases.
And we try to figure it out.
We use our Apple watches, we goin the cold plunge, we do all
(26:57):
these things.
The reality is is if my body'sgoing to flare up, it's probably
going to, and I don't have alot of control over that and
that's when I rely on God and Ithink that even just me being on
this podcast, like the factthat I'm here speaking to you
guys, could be a reason that Ihave grown so I can help
somebody else, and I think ofthe bigger picture today, like I
(27:18):
truly do.
My God has helped me through somuch Like I, I I had gone
through I'm gonna get emotionalon the podcast I had gone
through several miscarriagesbefore having my son and I
thought that it was related toCrohn's.
And I and I will say thatbecause I was like, well, maybe
it's my, you know, who knows isthe inflammation.
And you know, we found out thatI had a uterine septum which I
(27:40):
had surgery for in June of 2023.
That's also when I had mycolonoscopy, right within that
couple weeks after.
So, the surgery, thecolonoscopy, that's why I think
I had that flare up at that time.
It was a lot of stress on thebody.
But, point being that, I thinkthat definitely there was a lot
of hard things that happened inmy life the last couple of years
that stressed me out, but Ididn't flare up a lot during
(28:04):
those miscarriages or anything,which is quite crazy, because I
thought for sure that my bodywould go into overdrive being
stressed that way.
But, yeah, no, I, it's up toGod Ultimately, like I don't
have control over this disease.
I don't know why it happened.
I don't really understand it.
I've learned to have a lot ofacceptance around it and to talk
to people openly about it,because it's nothing to be
(28:25):
ashamed of.
It's something that I have,that I have to deal with.
But you know what?
Other people have, problemsthat I don't know about, and if
I can help somebody by speakingabout my problem and telling you
guys certain things that haveworked for me, like cold plunges
, like some of the things thatI'm doing, like maybe that's why
I have Crohn's, maybe it's tohelp somebody else that has
(28:45):
Crohn's, and that's the way Ithink of it now.
I don't think of it as being asentence that God gave me.
I think of it as being anopportunity to help somebody.
Speaker 2 (28:51):
So sometimes we, as patients, get obsessed with
metrics.
It's one of the reasons why Idon't wear my Fitbit every day
and why I have resisted fromgetting one of those rings,
because I know that I will gooff the deep end.
So I mean, I know that you'rewatching, like your heart rate
variability and all that, buthow do you find the balance
(29:11):
between staying physically fit,working out as much as you want
to, but then not likeoverstressing your body,
especially now that you have anewborn at home?
Speaker 3 (29:20):
You know, I had always put so much pressure on
myself and I'm learning to givemyself grace.
That is a new concept for methat I had to kind of, I think,
develop through having Crohn'sis give yourself grace.
I remember when I was sick andI was unable to do a lot of
things.
I was doing everything veryslowly when I was in a flare-up
(29:40):
but I got so much more donebecause I was going at a slow
pace and I wasn't rushing andpushing myself.
So like I feel like that has alot to do with the fact that
like I need to take things slow,like balance for me looks like
not pushing myself to an extremeand taking pausing the workout
video I have, taking a few morebreaths and not saying I have to
(30:01):
do this, start to finishperfectly.
That's my problem.
I'm a perfectionist and I thinkwhen you set that expectation on
yourself of like being aperfectionist, that's stressful
and stress is such a hugecomponent of this disease.
If I just take it back and say,like I don't have to do this
perfectly, I'm going to do thebest of my ability today.
Maybe my perfect today is 60%of what I can give and that's my
(30:21):
perfect for today and beingokay with that.
That just takes a lot ofevolution and growth, like.
But I feel like I've gotten toa point where I have to enjoy
the journey more than thedestination, and I know that
sounds so cliche, but like it'sthe truth.
Like I was always trying toattain that perfect physique
that I wanted to attain and nowI'm just like I want to work out
because I enjoy movement for mybody.
(30:44):
That's really helped me a lot,because before it was to attain
a certain look and now it's toattain a certain feeling of joy
that I can move and actually dosomething with my body, whereas
when I'm in a flare up, I can't.
You know, I it's a newperspective, it's it's.
It's a new perspective andthat's, I think, how you gain
that balance with working out.
You have to look at working outin a different way, as just
(31:05):
attaining a goal.
It's more than that.
It's.
It's about appreciating thefact that you can do what you're
doing.
You know, that's what I thinkis going to help people most if
they are people who work outlike me is just changing that
point of view a little bit.
Speaker 2 (31:18):
No, that's a very, very lovely way to say that.
It's a paradigm shift.
I try to be grateful for thingsthat my body can do, and I have
a really hard time with that.
I say I'm a recoveringperfectionist.
My mantra is done is betterthan perfect, but sometimes I
have to convince myself thatthat's the truth.
(31:40):
Right, I have way too manysarcastic and dark jokes about
my butt trying to kill me.
So I mean, but the way that yousaid that, like it was
inspiring to me.
I'm like okay, I need to lookat this from a different
perspective too.
Speaker 3 (31:56):
Yeah, it's taken a long time to get there.
I mean, I remember still goingthrough flare upsups and or
starting to get going, startingto have flare-up symptoms and be
like, damn it, I really want tofinish this, this workout
program that I'm doing, and Iwant to finish it.
And you know I'm I'm justcomplaining, you know, about it,
to my husband or whoever.
And the reality is like what'smore important you finishing
(32:16):
this workout program or you like, feeling healthy?
Like the whole point of workingout is to feel healthy, not to.
You know, and we lose thatperspective as people who are,
you know, work out a lot is thatwe just look at it as, oh, I
want to get this done, I want tolook this way, I want to
achieve this goal.
What about where's the healthcomponent?
Fitness and health are not thesame thing, you know.
(32:36):
It's like being fit isdifferent than having a very
healthy body.
My body isn't always veryhealthy.
I might look fit sometimes, butmy body struggles.
So I try to focus more on whatam I going to do today to make
me feel healthy?
Tomorrow I'm taking a rest day.
Actually, my program told meI'm not supposed to take a rest
day tomorrow.
I have a schedule for adifferent day, but I'm like you
know what, I don't feel up forit, so I'm just not going to do
(32:58):
it.
And the old me would have beenso upset with myself and
whatever.
And the reality is, what am Iputting this pressure on myself
for?
Why?
Where did that come from at ayoung age?
Why Nobody put pressure on me?
It's strange.
I think a lot of us do that.
But that's not why we're here.
We're not here to put pressureon ourselves.
(33:19):
To be a certain way.
We're supposed to enjoy whatwe're doing.
That's the whole purpose.
Speaker 1 (33:24):
It's such a hard thing to do, though, I think for
everybody not just peopleliving with inflammatory bowel
disease, but just everybody it'slike just living our lives,
striving, striving, striving.
That's kind of the Americanculture, frankly.
Speaker 2 (33:35):
I was about to say it's American, it is uniquely
American.
Speaker 1 (33:41):
Yeah, but I'm glad that you're recognizing it.
I'm glad that you're startingto connect the dots between the
two.
And I wanted to circle back onsomething you said about heart
rate variability.
It's interesting you say thatbecause there is research that
shows that heart ratevariability is something that
can help people figure out ifthey're having a flare.
We had Josie McGarva talkedabout that on her episode,
didn't she?
Speaker 3 (34:06):
Robin, and so did Tiffany Taft.
I thought I was the one thatfigured this out.
I thought I was the one thatwas going to figure this out.
I would call my dad or call mymom or call my husband, call a
friend and be like my heart ratevariability is really low.
I think I'm flaring up myhusband's like it's just for
watch I go.
No, I'm not.
There's research.
There is research.
Thank you, because I feel likeI needed that validation for
such a long time around thatconcept.
(34:26):
That's been an irritatingsituation with people.
But yeah, I think so, and Iknow heart rate for sure.
Mine increases when I'm in aflare up, maybe seven or eight
beats more than what it normallyis at rest seven or eight beats
more than what it normally isat rest.
You know it's very interesting.
But now that I know that, Iwish I had some tools to help me
(34:47):
when it is a low heart ratevariability, like how can I
increase that?
Cold plunge seem to have helped, or cold exposure, I should say
seem to have helped that oneday.
But is there anything else Ican do?
Like that's a question that I'mlike.
I go online, I research a lotabout this kind of stuff too,
and I'm like that.
I'm like I go online, Iresearch a lot about this kind
of stuff too, and I'm like,maybe this I'm thinking the
(35:08):
vagus nerve has a lot to do withmy disease as well Like that
rest and digest state right,like so I don't think I'm always
in rest and digest, like mostpeople are.
My husband likes to say to meyou need to turn your brain off.
I'm like oh, I don't know howto do that.
Like how do you do that?
How do you turn your brain off?
Speaker 2 (35:21):
I think most people can do that this is not the
group right here, this audienceright here, the three of us.
We cannot.
Alicia and I are not the twopeople to answer that question
for you.
Speaker 3 (35:30):
I can't turn my brain off.
I don't know.
Even when I'm like resting, I'mthinking about something and
it's like I need to learn how tomeditate better.
I used to do it in 2020.
I made a commitment after that,during that flare up, to get me
out of that.
I was meditating every nightand I did it for like almost a
year every night.
After that it's great.
And then, of course, life getsinvolved and then I just lose
(35:53):
track of doing those things.
But that that seemed to havehelped for a while.
Yeah, man, there's just.
I just wish I had some moreinformation about what to do
with heart rate variability whenit's low, Because if I could
figure out a way to keep that up, I have a feeling that I won't
be flaring up.
That's just what I've seen.
But I also was battling withthis chicken or the egg.
(36:13):
Is my heart rate changingcausing my Crohn's disease, or
is my Crohn's disease causing myheart rate variability to
change?
I don't really know that either.
Like, I don't think that it's aheart issue that I have, but I
think that is something wrongwith my autonomic nervous system
that is causing my Crohn'sdisease or autonomic nervous
(36:34):
system to be, you know, off.
I don't know.
You know that's something I'vethought about too.
Speaker 1 (36:38):
So having a baby, a super, super tiny, tiny baby
that definitely contributes toall of the other stuff too.
When you're so exhausted you'renot meditating because you're
like I just put the baby downand now I'm so tired, kind of
thing, and so I'm sure that haschanged things.
You haven't necessarily noticedthe stress of being a new mom
contributing to any symptoms, orhow has that worked for you.
Speaker 3 (36:59):
Jason has been a very good, easy baby so far, like in
general, sleeping wise.
He's given me some really greatspurts, like ever since three
months he's been pretty muchsleeping Like from nine.
I go to bed with him, I put himin his crib at like nine and he
wakes up like seven, six, 30.
It's been awesome.
So I cannot complain.
(37:19):
I can't with that.
But yeah, I mean there'sthere's been a couple of nights
where he you know he'll wake up,but he's pretty easy.
I think I've had a lot of timeto prepare, unfortunately,
because I had gone through a fewmiscarriages.
I really prepared myselfmentally for having a baby.
We had gotten pregnant reallysoon after trying and I was like
whoa, like I was really scared,you know cause I didn't know if
I was really ready.
You know, I was just all thethoughts and everything and you
(37:41):
know what.
I had a lot of time to prepare,so I knew how hard it was going
to be, but it's been such a joy.
I really focus on gratitude, youknow.
Gratitude has been such a hugething for me in my life and just
like with him, even thoughthings can be hard, I look at
him and it's just like it's sucha blessing.
It's so hard for me to even beupset Like he has been a very
(38:04):
minimal stressor in my life, Ikid you not.
I know being a new mom is veryhard for a lot of people,
depending on the child, but forme it's been.
It's been a joy.
I mean, if anything, he'sdistracted me from myself, which
is me.
I'm the problem, you methinking about me is the problem
.
So he's distracted me from me.
That's been a huge help,because when I'm in my own head
about myself and my disease andit starts the anxiety, that's
(38:27):
when I'm in trouble.
When I can focus my energy onsomething else or someone else,
that's a safe spot for meactually.
Speaker 1 (38:34):
So this is my first time meeting you and hearing
your story, robin.
Does you get a chance to talkto all of our guests ahead of
time?
But I don't.
So brand new meeting you Justin our conversation.
You strike me as a planner andsomebody who does a lot of
research, and so I am verycurious about when you did
decide to start a family and youdecide to start your pregnancy
journey.
What research did you do onthis?
(38:55):
Because I know some people arepretty intimidated by taking a
biologic while they're pregnant,things like that.
So talk a little bit about just.
You know, how did you getyourself comfortable and
prepared in order to even startthis?
Speaker 3 (39:05):
I follow a few people on Instagram that are very big
in the IBD community.
I don't know if I should saythe names or not, but Natalie is
one of them.
Natalie Hayden, she's wonderful, oh my God.
God bless her heart.
She's one of the best women andI actually she lives in the
Chicagoland area as well, sowe've connected anyways, and she
she's on Humira and she hadgone through some things with
her Humira and I felt my heartwent out to her.
(39:26):
So, anyways, I was talking toher about it and I asked her
cause she has three kids and shesaid it was very safe.
She gave me some research tolook at as well.
My dad said Humira is safe tobe on during pregnancy after
looking at research that he didas well, and so, um, you know
what?
I just trusted the doctors, Ididn't think too much about it.
I, my pregnancy was pretty good,like the first seven months.
(39:47):
I was fine.
It was just again that July,august, I'm telling you
seasonally, that's not a goodseason for me.
That heat, I don't know what itis about that summer heat.
I go for walks and my heartrate stays elevated.
After working out, I'll go fora walk.
It's just too much, likethere's too much heat for me, I
think, and I my body doesn'tknow how to respond to it
properly.
And yeah, that's, I thinkthat's why I flared up.
(40:10):
I remember it had started rightbefore moving into this house
that that was a stressor, though, so that was that could have
contributed.
The moving was was, yeah, verystressful because we had so much
crap to move and everything.
Speaker 1 (40:22):
Yeah, moving is for the birds.
I've done it too many times,robin has also done it too many
times and, yeah, it's just awful, I think that might have
contributed to it.
Speaker 3 (40:31):
But I was pregnant, I was kind of hormonal and the
flare-up kind of started.
I think I said this the 32ndweek of my pregnancy and then
when I looked at some chartonline, that was when like a
huge hormonal shift happensduring pregnancy.
Can't remember exactly what,but I do remember seeing that
like some hormone drops at thattime, the 32nd week.
(40:53):
So I don't know if estrogen,progesterone, all those things
play a factor in IBD or not, butI do know that I thought that
was quite interesting that thatthat is when I started to have
those those symptoms too.
So I don't know.
Speaker 1 (41:07):
I have to fully admit that I don't think I could have
my dad as a gastroenterologistand giving me scopes.
So I am genuinely curious abouthow your choice to be with your
dad like I get it, like I thinkit's like it's.
You know you have a lot ofcomfort with this person.
This person changed yourdiapers at some point, but also
now you're a grown person.
So talk a little bit abouthaving a family member as your
(41:29):
GI.
Speaker 3 (41:29):
Yeah, of course he does this for a living.
So I just was telling myself,this is my dad, my doctor, he
does this for a living.
He's, you know, he's helpingpeople.
He's going to give me the bestcare that he can.
And I was in so much pain thatI was like, whatever, I just
(41:50):
want to figure out what's goingon at this point, you know.
So you know I've gotten over it.
Like, all of our family membersgo to him for gops.
You know, I'm like I'm justanother family member.
Like that's the reality.
If you have a GI doctor in yourfamily, like yeah, you're
probably going to use thatperson to.
You know, if he's he'sconsidered to be a pretty good
doctor in the area like you'regoing to go to him.
(42:10):
You know I would have gone tohim if I was having issues with
my, with my stomach, when I wasa kid.
I would have like there's noquestion.
But now you know that I'vegotten older, I do wonder, like,
what it would be like if I wentto somebody that specialized
primarily in IBD rather than agastroenterologist.
That's something to explorepossibly in the future, like.
But you know, I just feel likeit's.
(42:31):
It's not as embarrassing as Ithought it would be, but I just
feel like I've gotten over itagain.
When you're in that much pain,you don't care who's helping you
or what's going on.
Speaker 1 (42:40):
Well, and if it's your family member, chances are
that you you might be able toget seen faster, because it's
like well, it's my dad, my dad'sgoing to fit me in, right?
Speaker 3 (42:49):
Thanks, you know, come on, hurry up.
It's a blessing.
It really is a blessing becauseI was able to get diagnosed so
fast.
I was diagnosed within threeweeks.
I mean, some people go yearswithout being diagnosed.
My dad's like, okay, you keeppersisting that it's not beats,
that you're eating, we'll scopeyou, but I'm sure you're fine.
And I'm like, no, I'm in painand like I would have never
asked that, like you know.
But so, yeah, they did an upperand a lower and they figured
(43:12):
out.
He saw the inflammation in mysigmoid colon and how bad it was
.
And he's like you know, to somepeople he's like, yeah,
andrew's got one of the worstcases of Crohn's I've seen in
like 20 years.
And I'm like, oh really, younever told me that what he's
like.
He's like, well, I'm, you know,you're my, you're my daughter.
(43:35):
I'm not going to tell you that.
But yeah, it's pretty bad whenyou're in a flare up where it's
like he's trying to do the besthe can, but at the same time I'm
his daughter, so it's hard forhim too.
It's a struggle.
It's a struggle for both of us.
Speaker 1 (43:48):
I think I do.
I feel like I have to ask thisquestion.
But, like, are you a veryfrequent beet eater family?
Like, why did the beets keepcoming up?
Speaker 3 (43:58):
He could not believe that I had Crohn's, like he
couldn't believe that I wasbleeding.
He was just like there's no way, we don't have that in our
family, like there's no way, youknow.
And so, yeah, he just keptinsisting that it must've been
something.
I was eating Tomatoes, ketchup,beets, whatever.
Yeah, the beets thing I stillbring up to him when I call him.
Speaker 2 (44:17):
But If you've had blood in your stool, you can
tell the difference betweenblood and something you've eaten
.
Speaker 1 (44:23):
Oh yeah, I mean, I'm just saying I mean also, don't
you like not just have blood,but oftentimes there's like
mucus and other things too, likeit isn't just, like there's
other signs.
Speaker 3 (44:35):
So this was like my first flare up when that
happened, so like it was justmore like I couldn't tell Like
now I look at my poop every timeI go, like every person with
IBD, and I give my husband ahigh five.
When it's solid, I swear I'llbe, like I'll come out of the
bathroom Like it was a good one.
You know, it was a great poop.
Like I didn't even have to wipe.
(44:55):
It's like that's awesome.
And then there's other dayswhere I'm like oh my God, I
think I'm flaring like justhaving a little bit more
diarrhea.
Sometimes it's more just likediarrhea.
Other times it's more just likethere is some mucus sometimes.
But for me it's like when I'min the flare up it's basically
like I'm pooping blood, likethat's pretty much it.
It's bad.
Speaker 2 (45:13):
I will tell you that a positive note potty training
so much easier as somebody whohas to go to the bathroom more
often.
Speaker 3 (45:27):
When I'm not in a flare up I don't have.
I go once a day when I'm not ina flare up, and when I'm in a
flare up I go 17 times a day.
It's like crazy how my body cango from just being a normal
body to when I'm in a flare up,having to go so often, you know,
and the urgency, which is a newsymptom that I just got in the
last couple of years.
I used to never have urgency.
The first five years of mydisease didn't really have
urgency to go during a flare-up.
Now, yeah, I've had accidents.
I've never had accidents before, but that's something I had to
(45:49):
deal with the last few years.
Speaker 1 (45:51):
So, yes, I think it's really wonderful that your dad
is there to be such a fantastichelp for you and such an amazing
resource and to really like.
You know nobody's going to carefor you like your dad.
But you know when you havesomebody who's saying the most
that he's the most complicatedcase of Crohn's he's ever seen,
(46:12):
I definitely understand why youmight be considering talking to
somebody else, you know, just toget a second opinion.
Speaker 3 (46:17):
Yeah, definitely.
I mean, when I heard that whenwe were out with family, I'm
like were you exaggerating, youknow?
I took him aside and he's likeno, he's like you have a pretty
bad case.
And you know it's hard, it'shard for me to be serious with
my dad.
We have, we have, a jokingrelationship, you know.
And so, all jokes aside, he waslike yeah, you have a pretty.
(46:41):
Not, there is more informationout there.
Speaker 2 (46:44):
There's a lot of options and different approaches
now and research is literally.
Every single conference, newresearch is being presented and
they're trying new things inclinic and there's new clinical
guide.
Like I just if it's notsomebody who sees only IBD like
I, can't tell you the number ofspecialists that I have heard,
(47:06):
either on our show or at patienteducation or at professional
education, that have said ifyou've seen one IBD patient,
you've seen one IBD patient andso, like even Dr Marla Dubinsky
said, you know, if I seesomebody and I've never seen it
before, I don't automaticallydiscount them.
I'm like, oh well, this issomething I haven't seen before.
Let's dive in.
(47:26):
Because every single personwith IBD it's different for
everybody, because our bodiesare different, the way that we
metabolize stuff is different,our hormones, like everything,
is different for every singleperson.
When I went to see somebody,from a regular GI to somebody
who only saw IBD which was in2018, mind you, I did not see an
(47:48):
IBD specialist before 2018.
And I could kick myself in thebutt every day.
It was a relief when I said,well, my doctor said that this
is not for my Crohn's and she'slike I mean for my IBD, and
she's like it is.
And I was like, oh, I had thisand I have this.
And she's like that's it too,that's it too.
And so you know, it was justlike I'm not crazy, I'm not
normalizing my symptoms.
(48:09):
Like it just made me feeljustified, something new, that
brand new, which is why I'mconsidering a second opinion
right now and I go to the IBDclinic at Mayo.
Because of my age I'm 50 and I'min that perimenopause,
menopause stuff I started havinghot flashes and night sweats
and so when I was talking tosomebody who was not my GI, who
(48:29):
knows that I'm having nightsweats, I was like, oh, blah,
blah, blah.
I started seeing a registereddietician because of my symptoms
and I'm like, if my doctor'snot going to help me, I have to
do something to try to go to thebathroom less frequently, like
I'm going to start seeing mydietician again.
And she was asking me she goesokay, you've given me all your
crown symptoms.
Now, out of all of yourperimenopause symptoms, what's
the one that's bothering you themost?
And maybe we can address thatone too.
(48:50):
And I said night sweats.
Like I'm going to the bathroomthree, four, five times a night
and then I'm also waking up withnight sweats.
And she said, robin, nightsweats is an indicator of IBD
active disease.
And I said I'd never heard thatbefore.
I'm like what are you talkingabout?
And she's like she did work atCedars and she's like that's one
of their intake questions whenthey're seeing new patients is
(49:12):
do you have night sweats?
She's like that is an indicator.
Speaker 3 (49:15):
And I'm like.
Speaker 2 (49:15):
I'm going to Mayo and I told them that and they
didn't even say that to me, youknow.
Speaker 3 (49:19):
So it's like that makes me wonder because the day
before my period I get nightsweats so badly that I have to
change out of my clothes in themiddle of the night because I'm
sweating.
But I think that has to do morewith hormones.
I don't know.
Speaker 2 (49:32):
I think hormones have played a bigger role in women's
players than anybody knows yet.
Speaker 3 (49:37):
I think so as well.
I mean, that makes sense to me.
Speaker 2 (49:43):
Angie, thank you so much for coming on the show and
sharing your journey with us andsharing your life with us, but
it is time for me to ask you thelast question, and that is what
do you want the IBD communityto know?
Speaker 3 (49:54):
So for me, I just want people in the IBD community
to know that, although Crohn'scomes with lots of challenges
physically, emotionally,mentally it's has afforded me,
and it can afford you to, a lotof opportunities to help other
people by, like, just sharingyour story and reaching out and
sharing your experiences withCrohn's or ulcerative colitis.
(50:15):
It's given me a lot ofopportunities to share and to
get to know people, to learnabout what works for them, what
doesn't work for them, and tojust spread hope in my God.
That's the thing for me is it'sgiven me an opportunity to rely
more on my God, and I believethat sometimes we're given
things that are hard so that wecan use that as an opportunity
(50:36):
to strengthen our faith in God.
That's true, that's what Ibelieve in my heart.
So sometimes, when I'm upsetthat I have this, I think about
it as an opportunity to havemore faith in him, that he will
help me through this.
And you know what I've gonethrough every flare up that I've
gone through it's been hard,there's been challenges that
come from it, but it's given mean opportunity to become more
(50:56):
spiritual, to become moreconnected with something that I
might've not chosen to beconnected with had I not been
diagnosed.
You know what?
It's a hard thing, but it'sgiven me a beautiful life, with
people in it that support me,and a stronger faith, and that's
what for me I believe I'm putup here on earth is to be closer
to God and to help people, andmaybe by sharing my story I can
(51:17):
help somebody.
Speaker 2 (51:18):
Thank, you so much.
You're going to help so manypeople with just sharing your
story so openly.
Speaker 1 (51:23):
Absolutely.
Thank you so much, angie.
It was such a pleasure to getto know your story and get to
know you, and so we reallyappreciate you being so open and
honest with us, and thank youso much for sharing with us.
Thank you everybody else forjoining us and cheers, everybody
, cheers.
Speaker 3 (51:37):
Thank you, hi.
This is Angie.
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