November 13, 2024 • 47 mins
Ever wondered how someone turns a challenging health diagnosis into a source of artistic inspiration? This week we chat with Kaitlyn Niznik about her microscopic lymphocytic colitis and how is influenced her life and her art! Kaitlyn offers a unique perspective, sharing her journey from diagnosis to becoming an empowered advocate through her art. As an art teacher, Kaitlyn navigates the daily balancing act of managing her classroom and her health, all while creating meaningful art that she shares on Instagram. Discover how her experiences with colitis have ignited a passion for medical illustration and inspired her creative process.
Join us for this episode of Bowel Moments, where we explore the intersection of art and life with Kaitlyn Niznik, all wrapped up in a narrative that's as uplifting as it is insightful.
Links:
- Kaitlyn's Instagram account- check out her beautiful art!
- Information on Microscopic Colitis - Mayo Clinic
- Collagenous and Lymphocytic Colitis info- National Institutes of Health
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Alicia Barron (00:00):
Hi, I'm Alicia and I'm Robin, and you're
listening to Bowel Moments, thepodcast sharing real talk about
the realities of IBD Serve onthe rocks.
This week we talked to CaitlinNisnik.
Caitlin is our first guestliving with microscopic
lymphocytic colitis.
We talked to her about whatthat is, what it was like being
(00:21):
diagnosed, and some of thetreatment options that she's
tried.
We talked to her about whatit's like being an art teacher
and managing a classroom whilealso managing her microscopic
colitis.
We talked to her about how it'sinspired her art and all of the
beautiful pieces you can see onher Instagram account, and also
how it's inspired her to lookinto becoming a medical
illustrator Cheers.
Robin Kingham (00:43):
Hi everybody, welcome to Bell Moments.
This is Robin.
Hi everybody, welcome to bellmoments.
Alicia Barron (00:45):
this is robin hey everybody, this is alicia and
we are so excited to be joinedby caitlin nisnik.
Caitlin, welcome to the show.
Thank you for having me.
We are so excited to hear yourstory.
But first, first question foryou is what are you drinking?
Kaitlyn N. (00:59):
I'm drinking ginger peach turmeric tea that sounds
lovely.
Alicia Barron (01:02):
Robin, that sounds lovely had.
Robin Kingham (01:04):
I haven't had turmeric in a tea yet, but it
does sound very lovely.
Alicia Barron (01:08):
Is it earthy, then Does that make it kind of
like earthy?
Kaitlyn N. (01:11):
flavor.
Yeah, it's a nice herbal tea,okay, it's gentle which I like.
Alicia Barron (01:16):
Yeah, that is a nice thing.
Okay, great.
Robin Kingham (01:18):
I love ginger tea , and I usually do ginger lemon,
ginger lime though, but I likethe idea of ginger peach.
Alicia Barron (01:23):
I'm going to have to try that.
Robin Kingham (01:24):
Robin, what are you drinking?
I am still in recovery mode, soI'm drinking grape Powerade.
It's so exciting.
Alicia Barron (01:34):
That is my favorite flavor, though I grew
up drinking grape Kool-Aid andso, like anytime I can get one
of those like fantastically fakegrape flavored things, I'm like
hell yeah.
Robin Kingham (01:43):
Yes, agreed.
Alicia Barron (01:45):
Yeah, that's great.
I just ate peanut butter aswell.
Let me tell you what I neverwant to drink again Lemon, lime,
gatorade, never.
Robin Kingham (01:53):
Oh, is that because of the Poland?
I?
Alicia Barron (01:54):
drank so much of it and then threw it up.
So I'm done.
I'm done drinking lemon lime.
Let me tell you Anyway, sorry,I'm scarred by this, I'm scarred
by my experience, everyone.
Robin Kingham (02:04):
Imagine having to do seven of those in just two
years.
Kaitlyn N. (02:08):
No, you'll have to get a new flavor of Gatorade
every time.
I know.
Robin Kingham (02:11):
That's why I do Gatorade, that's why I do the
Gatorade Miralax, because I canat least have a different flavor
every time and it's not likesomething where it's not like
you get.
That's your only option.
You have to have that samelemon lime flavor that they put
in those big gallons of stuff.
That's why I do Miralax.
But I also get Zofran.
So I, when I start my prep, Itake Zofran before I even start
(02:33):
my prep.
Alicia Barron (02:34):
Okay, I'll keep that in mind for five years from
now when I need to get it doneagain.
Because, yeah, I was.
This is the second time andboth times I was like vomiting.
I was so nauseous.
So I don't know if it's justlike the volume of liquid, or
whether it's the viscosity, orwhether it's just I don't know,
I don't know.
Robin Kingham (02:49):
But um Alicia, what?
What are you drinking right now?
Alicia Barron (02:53):
Cause you're gonna have to cut all of that
out.
I am drinking Waterloo cherrylimeade.
It is quite good.
Actually, I'm a big fan of theWaterloo's, you know.
Thank you to guest Caroline oflike episode 10.
I think I mean forever ago.
Who introduced us to Waterloo?
I'm a big fan.
I'm a big fan of it, but hadWaterloo's Really, I feel like
you would like them.
They're, they've got quite abit of flavor.
(03:22):
Like it's a nice like slightlyit in a like a champagne glass.
No, I like it a little.
I mean it's.
It's a little bit stronger of aflavor, but slightly less.
I feel like slightly that'sbubbly than the.
Robin Kingham (03:32):
Oh, that would be good for me.
Lacroix is too bubbly for me.
Alicia Barron (03:35):
I mean, don't quote me on this, Cause you are
the bubble expert on sparklingwaters.
Obviously not champagne, causethat's me, but for sparkling
waters, yeah.
So I feel like it is a littleless bubbly, so you might like
that.
I'm going to have to try it,yeah, okay, I'm a big fan.
Anyway, this isn't aboutdrinking or Zofran or any of
that.
Robin Kingham (03:54):
It's a little bit about drinking, just a little
bit.
Alicia Barron (04:00):
You know, when she said to me like no alcohol
today, I was like dang it, likeI thought I could have a glass
of wine.
I have a lovely, lovely roséopen in my fridge.
I guess I won't be drinking it.
Robin Kingham (04:08):
Next week.
Next week For recordingpurposes.
Alicia Barron (04:12):
Oh, I was like she told me just tonight I was
like no, I just meant forrecording On to the show.
Caitlin, it's not aboutdrinking, it's not about bubbly
waters, it is about you.
So tell us your IBD story.
What brought you into ourcommunity?
Kaitlyn N. (04:26):
So hi everyone.
I'm an artist and educator andI was diagnosed with microscopic
colitis four and a half yearsago, but I've probably suffered
with symptoms for over six yearsnow.
So my symptoms started inundergrad, when I was in college
for my art degree, and I justthought college was super
stressful.
I thought maybe I wasn't usedto someone else's cooking and
(04:50):
the cafeteria food was a littleoff some days and I found myself
always having to stop bydifferent bathrooms on my way to
class or on my way to the dorms, but it was convenient, so I
kind of ignored it for a while.
Once I graduated, I got a jobtwo months later and I started
teaching and my symptoms kind ofstarted getting progressively
(05:12):
worse.
I had way more frequency inbowel movements, I had a lot
more pain going on and mydoctors kind of just chalked it
up to stress and I was like,yeah, the stress of a new job, I
get it.
Then I finally started a lowresidency master's program,
because in New York State youneed your master's to maintain
your teaching license.
So then I went to the master'sprogram.
(05:33):
It was a 10-day residency everysix months and that time it was
immediate.
After every meal I would getintense pain and just be running
to the bathroom.
And we had a very set schedulein grad school where you went
immediately from dinner to alecture center, to an artist
lecture and then you hadcritiques and stuff.
(05:54):
So I really needed to functionand I was finding it extremely
hard to do so and then I thoughtit would get better when I got
home.
And it didn't.
It just kind of stayed that wayfor months and months and my
pain was getting worse.
I was losing weight drasticallyand I had fatigue, diarrhea,
presyncope before bowelmovements and this time, coming
(06:16):
back, I have long commutes.
I'm in upstate New York and youknow I have a teaching job, so
there were no like frequentbathrooms to save me.
And I've always had a phobia ofblood and doctors and I have
the fun history of fainting atthe cider thought of blood.
So I've always been weary ofdoctors and I never wanted to
(06:37):
get any testing done.
I always just wanted answers,no tests.
But after coming back from thefirst residency I knew I wasn't
going to make it through gradschool without having tests.
So in early 2020, I got my firstcolonoscopy and I was diagnosed
by biopsy results withmicroscopic lymphocytic colitis
and basically it's a lesserknown IBD that can only be
(07:00):
diagnosed through colonoscopybiopsies and according to one
Danish study that theMicroscopic Colitis Foundation
highlighted just a couple ofdays ago, rates of microscopic
colitis are outpacing ulcerativecolitis and Crohn's disease, so
it's an up and coming illness.
There's two different typeslymphocytic colitis, which is
what I have, and collagenouscolitis, and basically mine is.
(07:24):
The pathology of it is that itshows an abundance of
lymphocytes in like epithelialtissue, and collagenous colitis
just has a thicker collagen bandwithin their biopsy images, and
most people diagnosed with thedisease are middle-aged women
and I'm in my twenties.
And afterwards, after I got myresults, the pandemic
(07:47):
immediately started and so I wasput on my first few rounds of
budesonide and I was told toquit cold turkey and my symptoms
immediately came right back andI jumped to another doctor
because I realized you're notsupposed to just stop butasinide
and other steroids and shelistened to all of my phobias
and fears of testing and needles, so she decided to have me do a
(08:12):
ton of breath tests, so I didsome for bacterial overgrowth, I
did some for lactoseintolerance and fructose
intolerance, and the fructoseintolerance is what came back as
positive as well.
So I have to avoid a lot ofsugary things like fruit juices
and stuff like that.
She eventually ran out of teststo do for me so she gave me to
(08:35):
another doctor in the city andagain during the pandemic.
So I was meeting with hervirtually and going to virtual
appointments.
She put me on, I want to say,about 10 different pills and
supplements, all at differenttimes of the day, still on
Budesonide for two years, butall different kinds of
supplements and powders andthings that I would just have
(08:57):
alarms going off throughout theday.
I'd have things I'd have tostir into tea, things I'd have
to take with this or that, andit just became a lot of upkeep
and my days were revolvingaround pills and I still wasn't
getting any better.
And then I got to my currentgastro number four and he has me
on dicyclamine for the pain,which is hit or miss when it
(09:18):
works.
It's an antispasmodic that'ssupposed to slow down your gut
and he's had me on three roundsof the drug Xifaxin.
Through the years I've tried alot of lifestyle and diet
changes.
I met with a nutritionist atone point but it's hard
committing to any plan 100% as ateacher.
I come home I'm tired at theend of the day, or I've stayed
late for my clubs and classes,and then you know, to cook a
(09:40):
special meal or to meal prep.
Sometimes I find that the mealsthat I prep I have to throw out
because they cause a flare up.
So you know it's a little hardgoing round and round.
And Zyfaxin has been prettywell.
I did my last one in August.
I finished my last round and itusually lasts like it gives me
a good one to two months beforeI start with symptoms again.
(10:03):
So right now I'm doing prettywell and as an artist my
practice has kind of evolvedaround my disease.
I think as I was switchingdoctors I wanted to become a
more informed patient.
So I do that through my art andmy art kind of revolves around
my studies and they feed intoeach other.
I've been doing pathologyslides for the past couple of
(10:25):
months and for a year I've beenmaking little tiny watercolor
paper cuts of little mini colonsand artery systems and I have a
rule that for when I'm doingresearch, every time I don't
know a word, I have to make anew slide for it.
So I love going down rabbitholes and just trying to figure
out as much as I can, and I'mhoping to eventually become a
(10:48):
medical illustrator.
That would be the goal.
I always tell my students thatit's okay to be scared during
dissection labs.
I've been helping them out withtheir shark dissection labs in
seventh grade which is traditionat our school for the past two
years and it's going to be threeyears pretty soon and they're
always so scared and squeamishand I'm like I get it.
I've been that way my wholelife.
(11:09):
It took me until I was 27 to beokay doing it.
So they have plenty of time togrow and that is my story thus
far.
Alicia Barron (11:17):
Wow, you are definitely the first person
we've had that's had amicroscopic colitis.
I am curious because it's stillautoimmune, it's still an
inflammatory bowel disease.
So I'm curious why they don'tuse like kind of more
traditional medicines, like someof the you know, the Remicades
and the Humeras and stuff likethat.
Are they just not effectiveagainst microscopic colitis?
Kaitlyn N. (11:37):
It's hard to say.
I'm part of a Facebookcommunity that deals with
patients that have microscopiccolitis and we've all been put
on so many different treatmentsand plans.
Some things that work for somepeople don't work for everyone.
The go-to for most doctors isbudesonide, so they put us on a
few rounds of that to see if itworks.
Another popular one that Ipersonally hate is the Pepto
(11:57):
protocol, which you takePepto-Bismol three times a day
and just keep going with that.
Robin Kingham (12:04):
And it's wild.
Alicia Barron (12:05):
Is it because the diarrhea yes, yeah, but that
doesn't do anything about theinflammation, like that's what
I'm so curious.
Robin Kingham (12:11):
Yes, I mean, even the Zyvaxin is like for
diarrhea.
Alicia Barron (12:16):
Yes, oh, you looked at it.
I think you're looking that up,cause I was like I've not heard
that one.
Robin Kingham (12:20):
It's like prescribing people with IBS to
manage diarrhea, which I meanour diarrhea is from a different
reason than people with IBS, sothat it's what we definitely
have to have a doctor on here toget to the bottom of this.
Alicia Barron (12:32):
I'm genuinely confused about this one and
slightly angry for you, but Ithink that just might be my
state today.
But yeah, I guess this.
It doesn't make sense becauseif it's autoimmune, you'd assume
that you'd be attempting toregulate the immune system,
especially if it's a lymphocyticone, which I know there are.
I mean, I'm speaking as if Iknow anything, but I think some
(12:57):
of the IBD medications out theredo work on T cells, which are
lymphocytic cells, right, soyou'd assume that that would be
good for somebody withmicroscopic colitis Weird.
Robin Kingham (13:02):
We'll be back with more information about this
, people, don't worry.
Alicia Barron (13:05):
Don colitis Weird .
We'll be back with moreinformation about this.
People, Don't worry.
Don't take Alicia's medicaladvice.
Kaitlyn N. (13:07):
The interesting part is that most doctors can
agree on anything withmicroscopic colitis, from what
age you can get diagnosed withthe disease to is it affected by
food or not?
Some doctors say you have tochange your entire diet, get a
dietician.
And some people say, like fooddoesn't affect it at all, like
you shouldn't be changinganything.
Alicia Barron (13:28):
Well, I mean, that's just.
Everybody in IBD land has heardthat.
Kaitlyn N. (13:31):
Oh yeah.
Alicia Barron (13:31):
Oh, food isn't a thing you know and it's like,
well, clearly it is.
I mean you, yeah, so that to me, I just kind of roll my eyes at
that one and go sure, whateveryou know, eventually we'll have
the research that backs up that.
Diet is probably a part of this.
But yeah, I'm just mystified bythis one that is so fascinating
(13:52):
Right now.
Is there kind of a?
You said it's typicallymiddle-aged women that end up
getting diagnosed with this.
So is there, like it's neverdiagnosed in kids or it's very
rarely diagnosed in kids, Likewhy went by middle-aged women?
And if you don't know that youcan tell me that that's fine.
Kaitlyn N. (14:00):
In my personal opinion, because I don't know
the real answer, but I would saythat that's when majority of
people have their firstcolonoscopy is yeah, so when
they're middle aged.
And then women are more likelyto go to the doctors with
symptoms, and my family is aperfect example of that.
My dad is so stubborn and herefuses to see a doctor for the
exact same symptoms.
Alicia Barron (14:22):
Cool, yep, that sounds about right.
Yeah Well, and frankly,probably it's not till
middle-aged, because they'vebeen complaining about stuff and
it's been like, oh, it's juststress, you're just eating too
many, whatever, and like you getsort of patted on the head and
sent home here's youranti-anxiety medicine.
Kaitlyn N. (14:37):
Yes, they just did that to me.
They were like oh, you're notdrinking enough and you're
having issues because you'restressed and I, I'm the least
stressed, I've ever been Welland I'm sorry, but like who
doesn't live with stress intheir life?
Alicia Barron (14:50):
Like we all have stress, it's the way life is
Like.
You can't just use that as somesort of like you know, all
encompassing excuse for whysomebody is having symptoms.
That's dumb Soapbox.
So okay, you said your dad hassimilar symptoms.
Do you have a family history ofinflammatory bowel disease or
other?
No, no no.
(15:12):
I wish that it would give mesomething to bring to doctors,
right?
Yeah, that's so strange.
I mean, I had heard thatthere's like an increase in
people being diagnosed some ofthis stuff that are younger
people, I don't know.
Granted, I think I was onReddit, so you can't take that
with a grain of salt.
There was lots of likemicroplastics, so who knows,
maybe that's it.
Reddit is an interesting place.
Robin Kingham (15:28):
Just love how you're like jazz hands micro.
Reddit is an interesting place.
Just love how you're like jazzhands microplastics.
And then move on to the nextthing.
Alicia Barron (15:33):
I mean that's what they were yelling about.
There was lots of like GMOs,microplastics.
It's like, well, everything'sgenetically modified now, but
maybe not the same way.
Okay, I want to learn moreabout these testing they did for
the like fructose intoleranceand lactose intolerance and
stuff like that.
Is that again like kind of thisidea that diet is contributing
(15:55):
factor and thus, if you sort ofcut this out, because fructose
is basically like fruit sugar?
Kaitlyn N. (15:57):
Yes, so you just don't eat fruit.
So the thought from that doctorfor me was that my diet could
be causing inflammation andcausing a bit of an issue, even
though we went over all my foodsand it didn't seem like it.
The interesting part for thatwas, for the hydrogen breath
test, I needed to have aspecific diet the day before, so
for 24 hours before I couldonly eat broth, chicken, plain
(16:21):
chicken and rice, which is avery depressing day for me every
time I did these tests, but Iwould that would trigger
symptoms for me every time I didthese tests.
But I would.
That would trigger symptoms forme every single time.
And eggs were on there as well,but I would always be running
to the bathroom just from that.
Alicia Barron (16:37):
It's only chicken products you can have.
That's really strange.
That is, yeah, that's the firsttime I've heard of just like I
mean, robin, have you heard ofany?
Have you done any of thesetests?
Robin Kingham (16:48):
Breath tests.
No, Look again, Alicia and Ilike to have scientific data
backed opinions in here, butthis sounds a little bit like
these two of the doctors thatyou saw have bought into the
wellness industry and we're notactually using scientific
research to inform theirpractice and what they were
(17:12):
recommending to you, becausethat sounds like it's deep in
the wellness industry and not inactual medical care.
Kaitlyn N. (17:19):
Oh, absolutely, yeah, One of my primary care
physicians, way back when I toldher about my symptoms and she
gave me a pamphlet on becoming avegetarian, which was a book
that she wrote.
Oh bless.
And then she charged me for asick visit instead of an annual.
Oh my God.
Alicia Barron (17:38):
Oh, people, okay, Listen, so many opinions about
these people.
I want to dig in a little bitmore about your fear of doctors
and your fear of procedures.
You mentioned fainting.
Robin Kingham (17:50):
That's where I was going to go.
Alicia Barron (17:51):
Yeah, you mentioned fainting with blood.
Number one I want to know howyou do shark autopsies.
Autopsies, yes, is that what itis Okay?
Shark autopsies while beingafraid of blood?
Oh my God.
Robin Kingham (18:02):
Wait, that is what I'm going to call Wait, is
that not what?
What is it?
Alicia Barron (18:06):
called All of a sudden it's like not in my brain
Dissection, dissection.
Robin Kingham (18:16):
That's it.
It's going to be autopsies fromnow on.
That is amazing.
Makes it sound moreprofessional Right.
Alicia Barron (18:25):
It makes you all sound like criminologists over
there.
That involves blood, surely?
So like?
Is there a difference betweenthat type of blood and like
human blood?
Is it the thought of your blood?
Is talking to this going tomake you faint?
Let's start there, okay good.
Kaitlyn N. (18:34):
I was like oh God.
Alicia Barron (18:35):
All of a sudden, she just slumps down in her
chair and she's gone, okay.
So yeah, is it all blood, yourblood?
Tell us a little bit more aboutthis.
Kaitlyn N. (18:42):
Yeah, yeah.
So ever since I've been littleI've had a fear of blood,
doctors and needles and they allkind of go together.
Yeah, ever since I was little Iwas terrified of finger sticks.
Oh my gosh, the worst thingever for me.
Even things like blood pressurewould scare me.
I remember throwing up on anurse when she tried doing the
blood pressure cuff on me, and Ialso have a history of fainting
(19:06):
when getting shots.
I once took down a whole row ofchairs on my way out of the
doctor's office and my mom.
I just kind of started tippingover and then just collapsed.
Robin Kingham (19:17):
So yeah, oh, my goodness gracious, it was a fun
childhood.
How do you overcome this fearto be able to go to the doctor
and then, like you said, youeventually came to terms with
the fact that you had to havetests run in order to get
treatment?
How do you?
I'm really fascinated by this,because I know we've talked to
(19:37):
people that have fear of needlesand probably fear of blood too,
but not the way that youdescribed it.
I mean, you have to get over alot of fear in order to be able
to go to the doctor to havethese tests run.
I don't know if you had bloodystool as part of your symptoms,
but I know a lot of people withIBD do, and I have blood all the
time.
(19:57):
So, like I mean, I can'timagine fainting every time I go
to the bathroom.
You know what I mean.
Like, if there's blood, thereis the potential for blood at
all times, even though peoplehave told me that any amount of
blood is too much blood.
I disagree, but I digress also.
I'm apparently on a tangent.
How did you overcome the fear?
Kaitlyn N. (20:18):
So to answer that, I'm going to go to the most
dramatic episode first, when Iwas in high school so a little
bit older than the otherfainting episodes I was in
health class and we had avisitor come to talk to us about
donating blood and there wereno pictures.
She was just talking about itand I remember sitting there at
(20:39):
my desk saying uh-oh, andimmediately out cold, fainting,
and my pregnant teacher had todrag me out of the room by my
feet into the hallway and shewas trying to like lean me up
against a window and I passedout again and so she left me in
the hallway.
She called a nurse to come witha wheelchair and the bell rang
(21:00):
like perfect timing, andeveryone was flooding out into
the hallway and walking to theirclass and I was just laying on
the floor.
It was fantastic.
So, yeah, I had to overcome alot.
I've still been terrified ofblood and needles.
I had to get my COVID shotworking out of school in 2020.
And I was crying so hard Ididn't know how I was going to
(21:20):
make it through that.
Okay, but yeah, I was veryclear with my doctors that, like
, no invasive testing, like ohmy gosh, even even just shots
are just so much for me tohandle.
So when they said, oh, we needblood tests like we should get
you tested for everything, youshould do a colonoscopy the
worst thing I could think of was, oh my gosh, they're going to
do an IV and I can't handle that.
(21:41):
It was really grad school thatgave me the push I would not
have.
I would have been 29 and stillsuffering with diarrhea and not
knowing what in the world wasgoing on if it hadn't been for
grad school, because I knewthere was so much work I had to
do and I was not functioning andI knew something had to change
and I was down to 90 pounds.
(22:01):
That's the lowest I got.
So that was when I knew it waslike this is now or never.
This needs to happen.
And it was still the mosttraumatic thing, you know, just
crying and howling and gettingthe IV set in.
But I've done it twice more andI've gotten through it every
time.
I'm working with a therapistright now on my blood phobia and
(22:23):
my needle and doctor phobia.
So we're trying to get ittogether before the next
colonoscopy happens, just so Ican be a little bit better with
IVs.
But I think artistically.
I like to think of thingsobjectively and logically, if I
can, and break them down intosimple shapes and forms.
That's just how I can drawcomplex shapes.
(22:43):
So I started doing the samething with the colon and
pictures of it.
So that's an easy way for me tokind of start to get over my
fear of blood is to think aboutit in terms of color and the
shape of the vessels and thingslike that.
It helps also having a distancebetween the subject matter.
You know it's on the screen andI'm separate and I can close my
(23:06):
laptop at any time.
Going from that to sharkdissection is another big jump,
because then it's like theformaldehyde and it's the
experience of a dissection.
Luckily they're all drained ofblood.
I believe they have like liquidlatex or something in there
that's meant to mimic blood andit's red and it's dyed red to
look like that.
But the actual shark is prettyclean and you can distinguish
(23:28):
between like different colors oforgans.
So it's not too bad If you sayso.
Alicia Barron (23:35):
It still seems like it'd be kind of traumatic,
frankly, but it's not a personand it's not you, so I think
that probably would help.
But I applaud you for workingwith a therapist on this because
, yeah, this is prettycomplicating for your life, you
know, and your medical care and,just in general, like you said,
just the fact that you got aCOVID vaccine and that was the
traumatic experience that youhad with it.
So I applaud you for workingwith the therapist.
(23:56):
I will say there are somereally great resources out there
, especially on injections,because there was a lot of
people that, during the COVIDpandemic, were afraid of needles
and so they.
There's been a bunch ofinformation put out there about,
like you know, things you cando to help with needle fear.
Meg Foundation has some reallygood ones too.
It's the Meg M-E-G, like theWomen's Name Foundation.
They have some really goodresources as well of like
(24:17):
putting together your poke plan,which is like this is how I
want you, as the provider, tosupport me in this moment.
Like I want this kind of music,or I want you to like count to
three, or I don't want you tocount at all and I want to look,
or I don't want to look like itsort of helps you put together
like a plan for how you want totackle this.
And yeah, the IV thing is iswild, because of course you know
the needle doesn't stay in you,but it's still something in you
(24:39):
and I know that's really kindof weird for a lot of people.
So that's, that's a wholedifferent deck of cards.
Kaitlyn N. (24:44):
Yeah, my therapist and I have worked on a plan,
Like you said.
I have like a stress ball thatI bring and I have to sit in
like a certain chair facing acertain way.
And they understand, They'veseen me and I think my primary
care physician also wrote in mychart difficult patient getting
blood drawn.
So they know that anything theycan do to help so that I'm not
(25:05):
hollering and crying like atoddler works out well.
Alicia Barron (25:09):
Yeah, yeah, I think I don't love needles.
It's not my favorite, but Icause I think I'm.
I'm usually dehydrated though,so unfortunately that's kind of
my thing is that you know, but Iwould imagine that happens for
you as well.
If you're having like diarrhea,you're going to get dehydrated,
and so I'm sure that makes iteven extra harder, because your
veins are harder to access asexcess as well, so it doesn't
help.
Kaitlyn N. (25:27):
Yes, and, as Robin said, I didn't answer your
question before.
I'm sorry.
Microscopic colitis doesn'tusually produce blood in the
stools, so thank God I touchedthat bullet.
Alicia Barron (25:38):
Yeah, I mean, if you're going to dodge one,
that's a good one for somebodylike you.
For sure.
Let's stick with doctors for alittle while.
Because you mentioned you're onyour fourth, fifth, fourth,
fourth GI and that you kind of,as you were going along,
determined at some point thatthis was not the right provider
for you, and that's one of thethings you wrote on your
questionnaire too is just, youknow, like the importance of
finding the right fit for you.
So talk to us a little bitabout, kind of your, what
(25:59):
metrics you put in place to beable to kind of find the right
doctor for you.
Kaitlyn N. (26:02):
Yeah.
So my first doctor wanted tokeep me on Budesonide.
She thought Budesonide was theend-all, be-all and some
providers agree that you can beon it for a long time at a low
dose and I knew I wantedsomething else.
I didn't want to stay on a drugmy whole life.
So that's what led me to changeand I went to a more holistic
practice and that's why theyfocused on non-invasive
(26:23):
treatments like breath tests,and she referred me to the other
side.
I didn't make the choice toleave that practice, but she
referred me to another doctorand that was the one that was
toughest to leave because shewas known in her field and it
was.
I thought that I was getting thebest treatment that I could and
that's why I was on so manysupplements and she's really
making an effort and I had adietician.
(26:44):
But the moment it came down towas me crying during a Zoom call
a patient portal kind of Zoomand me telling her I'm in so
much pain all the time and Isaid I have a spot I can point
to it on my body and I tiltedthe camera down and I lifted up
my shirt and I was like here isthe pain and she said there's no
(27:04):
organs there that would causethat, and that just tore a hole
in my heart.
And that was the moment I knewthat I needed to study up and I
needed to become as informed ashumanly possible and take as
many notes as I could, and Ijust never wanted to feel that
helpless again and that's whatmade me leave.
Alicia Barron (27:22):
So when you went to your next provider, did you
sort of interview them before?
Do you kind of have a littlebit more of a like kind of
consult before you said, yeah,this is the person for me.
Kaitlyn N. (27:31):
Yes, I definitely did.
I don't want to say I'm acommitment phobe, but I
definitely wanted to make surethat it was the right fit
because I had wasted so manyyears with other doctors and
trying medications that weren'tright.
But he is absolutely amazing.
I can't say enough good abouthim.
He walks into your room and youimmediately feel at ease.
He's read the research, he'sdoing his homework and he's not
(27:54):
just saying the same thing atevery visit.
He's like okay, we're at thishurdle, what can we do to solve
that?
And I love that.
He knows about my phobia and heaccepts it for what it is.
Alicia Barron (28:05):
That's important, that's really good that you
found somebody that you feelreally confident in and that
makes you sort of have thatsense of calm, that point and a
lot of doodles.
Kaitlyn N. (28:36):
But then it turned into these little like cut paper
pieces that were so teeny tiny.
I don't have a lot of space athome to work, so I usually make
very, very tiny pieces of artthat I can just be like working
on on my lap, and I startedfeeling that these were almost
like surrogate colons in a way,like just tending to them and
just putting all the littledetails on them.
It felt like a piece of myselfthat I could control and a piece
(28:57):
of myself that I could keepsafe.
So I started putting them intolittle petri dishes as a way of
protecting them from theelements and just keeping their
fragile forms intact, and Ithink that's a method of
self-care for me.
It relaxes me and they just areso fun to do.
And then, from there, a couplemonths ago, I started doing
(29:17):
watercolor paintings of biopsiesand of pathology slides that I
was finding online and lookingat different staining techniques
for microscopic colitis andwhat the condition looks like
under certain conditions, andthat led me to my current series
.
Oh, that's so cool.
Yeah, so these aren't on mywebsite yet, but this is an
(29:38):
abundance of lymphocytes and Iam a big believer in spending a
ton of time on detail.
So I like that I have somethingthat can take a long period of
time and I can stop and walkaway when I need to, and then I
can come back to it every nightafter I'm done teaching.
What is that watercolor?
Like, what is it?
Yeah, so I've been usingwatercolor this one is Gamori's
(30:02):
trichrome, I believe staining,and I've just been drawn to like
the beautiful colors and somestaining techniques that I found
in my microscopic colitisresearch papers.
It's just so jarring to seebecause obviously you want the
lymphocytes to stand out so thatyou can count them and make
sure, like the condition islegitimate, and so some of them,
(30:24):
the colors that they use, arejust so beautiful and jarring at
the same time, I would say.
Alicia Barron (30:36):
Hey Ball Moments fans.
This is Alicia, probablyinterrupting myself, frankly
letting you know that Robin andI will be taking a little break
for the Thanksgiving holidays,and so your next episode will
come out on December 4th, but Iwant to take this moment in the
season of gratitude to let youknow how much we are so
incredibly grateful for each andevery one of you for listening
to the show.
Thank you also to our guestsfor sharing their amazing
(30:58):
stories and their resilience.
Thank you to our medical guestsfor sharing their passion and
their dedication, and thank youto our researchers for their
creativity and drive and forsharing your stories of working
on behalf of our community everysingle day.
So cheers everyone.
Happy Thanksgiving.
Yeah, what an interestingjuxtaposition of like
(31:21):
highlighting something that'swrong essentially that's like
overgrowing but putting it intosomething that looks so
beautiful.
Because, yeah, that is that isreally beautiful.
Wow, that's amazing you have youalways been an artist Like?
Do you just like?
Were you born just being like?
I look at the world in adifferent way.
Um.
Kaitlyn N. (31:36):
I wouldn't say born with the talent.
No, I was blessed to have a lotof great art teachers growing
up and they kind of fueled apassion for art in me and it's
just something that I couldalways turn to and something
that I could make into my own.
And that creative spirit justnever left and I knew I wanted
to become an art teacher, justlike them.
(31:57):
And I believe it's an artteacher's duty to have like a
personal practice outside ofwork.
So that's what I'm striving todo with my watercolor colons
(32:34):
no-transcript.
Alicia Barron (32:38):
Try to do stuff and my sister-in-law would be
like I don't.
I don't get what you're saying,but it was like her brain just
functioned like in picturesinstead of in words.
So is that you too?
I'm just like so fascinated bythis.
Kaitlyn N. (32:49):
Yeah, I would say I'm a visual learner.
Half of the notes I make don'tmake sense unless I make
pictures and sketches for themor I find some pictures online.
Yeah, I find that I learn waybetter visually, but I always
give my students the option.
I always pair, like visual withwords and audio and all that
good stuff.
Alicia Barron (33:08):
That's great teaching.
Talk to me about medicalillustration, because I think
this is that I think you'd begreat at it, number one, just
because it's like I'm superimpressed with the ones that you
produce.
But what is the call for this?
Like, is there?
It?
Does one find a job listed onLinkedIn for this?
Like, how does this work?
Because I mean, it's such alike, such a cool idea, but you
have to go work for, like, abook publisher.
Kaitlyn N. (33:28):
So it's an interesting field.
The more I learn about it, themore I love.
There's some where you can getinto, like courtroom sketches
and things like that forillustrating like an accident
and what it did to the body sothat a jury can understand it.
Then there's the publishingside of it, where you're working
with either researchers or afoundation or a school, a
(33:50):
university, and you're doingillustrations for them.
And then there's some thatspecialize in videos and
animation.
That's a whole new field thatis coming up and it's beautiful
to see what they can do withcells and going through the body
.
It reminds me of a high defversion of the magic school bus
and that makes a child in mejust so happy to see.
(34:12):
I've been waiting.
I would love to be a part ofthe field school bus and that
makes a child in me just sohappy to see.
I've been waiting.
I would love to be a part ofthe field in some way, just to
spread awareness of little knowndiseases like microscopic
colitis and just to spreadinformation about little known
diseases like microscopiccolitis.
But I'm also hesitant becauseof AI right now and the way the
world is going.
(34:32):
I want to see what a graphicdesign illustrator will be doing
in five years time and ifthey'll be replaced by AI.
Alicia Barron (34:40):
I think it's wise that you're thinking about that
because, yeah, the AI thingespecially is getting kind of
scary as it relates to likecopying people's voices or like
creating basically virtualvoices that are like sound just
like regular people and copyingmusic and things like that.
So it's just, yeah, I thinkthat's probably wise to wonder
about that for sure, but thatjust makes me sad.
Robin Kingham (35:01):
You think of AI's capabilities in research and
modeling, and it can do so muchmore, so much faster than what
we can in our human brains.
Because Dr Moss, when he was on, was talking about AI and
research, and so it's like is itgoing to do that?
Or is it just the fearmongering of it being it's not
(35:23):
new, but it's really new beingso public and public having
access to it?
So is it just the fear of thenew?
You know, you know, you know usAmericans.
We want things to be hard untilwe get the hang of the easy
thing.
And then we're like, oh yeah,let's make everything easy.
Alicia Barron (35:41):
So you know, I think it's just the wild, wild
west.
I mean, I think that's theproblem is that, like you know,
technology is outpacingregulation, and so it's like
nobody's governing this at all,and so that's the scary part for
me, I think.
Kaitlyn N. (35:52):
You won't believe it, but every year I do animal
drawing lessons with my eighthgraders, and last year was the
first year where I was like, ohmy gosh, this top page of Google
results were all AI images.
And so then you have to kind oftell the kids what's the
difference between like a tigerthat's photographed versus like
the AI tiger, and sometimes it'svery, very hard to tell.
(36:13):
I'm an illustrator, a volunteerillustrator for Knowing Neurons
, which is a neuroscience group,and so I illustrate articles
and things for them in my freetime, and I just finished an
illustration that maybe took, Iwant to say, 25 hours and yeah,
knowing that AI can replace thatin a second.
It doesn't have the same loveand feel of the human hand, but
(36:35):
if companies know they can getsomething done quickly,
unfortunately, a lot of themtake the easy way out.
I would love to tell viewers,if you have the time, to look on
google for ai medicalillustration especially, there's
a rat or mouse one and it'shorrifying Like AI is starting
to try to do medicalillustrations and to an
(36:56):
untrained eye that doesn't knowEnglish, you would think that it
might be real and it's justmaking up words.
It's putting appendages wherethey don't need to go and it's
very horrifying.
Alicia Barron (37:08):
I just yeah, I just looked it up and this is
some.
This is some weird shit.
There's a typewriter insomebody's brain.
There's a bunch of peopleinside this mouse huh oh my god
oh wow, this is.
This is strange, this is really.
Oh no, this is medicalillustration of mythical
creatures they're mythical.
Kaitlyn N. (37:28):
They don't.
I can do that.
You can mess with the mythicalcreatures perfectly fine.
Alicia Barron (37:31):
The internet is a strange place.
It makes me sad that that's thecase, though, because, like I
mean, I guess I can understandthe sort of economics of this.
Like for you to produce onepiece that takes you 25 hours if
you're paid an hourly rate foryour time, that's a lot more
expensive for them to just gointo, like chat GPT, and say,
come up with a model for a mouse.
You know neuro system.
So I guess I can understand theeconomics behind it, but it
(37:53):
does feel like it sort of ittakes the soul out of it a
little bit, absolutely.
Talk to us a little bit aboutbeing an art teacher, because
being a teacher has veryspecific hours, just like you
were talking about going to gradschool and having, like, at
this time you go here, at thistime you go here.
As a teacher, you have specifictimes that you must be in the
classroom teaching.
How do you cope with that withyour microscopic colitis?
Kaitlyn N. (38:14):
A lot of meal prep is the one thing that keeps me
functioning.
On most days I always haveoatmeal for breakfast and I
can't change that, because everytime I try to experiment then
it means that I'm running to thebathroom before my day even
starts and as soon as I get toschool.
So I'm trying to set myself upfor a good day and then hoping
(38:35):
that the meal that I prepped forlunch doesn't make me go into
like a pain spiral.
So I usually repeat a lot ofthe same meals throughout the
week and as I go I'm lucky inthat my schedule has a couple
classes and then a break, andthen a couple classes and then a
break.
So as long as I get to schoolearly, I still have time for
those bathroom breaks if andwhen I need them.
(38:55):
Most of the time I'm justsurviving on Imodium and then my
doctor's like wait a minute,you don't have enough bowel
movements.
Or you know, you're saying youhave diarrhea but you're not
having enough bowel movementsand I'm like yes, because I'm
taking Imodium immediately sothat I can function throughout a
normal school day.
Alicia Barron (39:12):
So a lot of Imodium, a lot of meal prepping
and just sort of pre-preparingfor your day.
How open are you with yourstudents about this, like, do
you tell them that, hey, I mightneed to?
Kaitlyn N. (39:21):
book it out of here .
So I do have a group of teacherfriends on speed dial that I
can call or text and say I needyou to cover class, just in the
rare case that I'm experiencingan episode.
Most of my students I would saythe older ones know that there
are some days when I'm just in alot of pain, especially the
classes that happen after lunch.
(39:43):
So sometimes I might use mywheelie chair as just a normal
accommodation and kind of pushmyself around to the different
tables, or I just might need asecond to breathe.
They also know about myfructose intolerance.
They don't really know about mycondition per se, but they do
know I have fructose intolerancebecause then I don't feel as
guilty for saying no when theybring in snacks.
Alicia Barron (40:04):
Yeah, that's a good one to use.
I would use that too.
I think that makes sense.
I think that it's a good way ofgoing about finding kind of a
balance for your classroom aswell, because I'm sure you don't
want to share too muchinformation and stuff.
But so I'm curious with thepain.
It doesn't sound like they'vegiven you like pain medicine.
It sounds like it was likeantispasmodics and some of the
other kinds of treatmentRationale for that.
Kaitlyn N. (40:39):
Did they give you a rationale for why they're not
giving you, just like, a painreliever?
They're convinced thatdicyclamine will work.
So it's not working?
Yeah, I deal with it.
Thankfully, I have a veryforgetful memory when it comes
to pain.
So my doctor will ask me areyou fine?
I'm like, yeah, I've been doinggreat.
And then I'll look at my dailylog and I'll be like, oh wow, I
was in like four out of fourpain some of these days.
But it comes and goes veryquickly with me.
So it's hard to find somethingin the moment because it usually
(41:00):
happens.
Sometimes it happens like aftera meal and it comes very
quickly and then it goes awaylike within an hour.
So by the time anything wouldstart working it would be too
late.
Alicia Barron (41:11):
I mean Robin, you've had pain issues with your
Crohn's disease.
Have you experienced somethingsimilar, or is yours more of
like a pain that comes and stayskind of situation?
Robin Kingham (41:20):
I have experienced multiple types of
pain, which is I said this acouple of times on the show
being able to describe your painmore specifically is so
important when you're talking toyour doctor.
So I have had pain in mystomach, which is what led to my
diagnosis changing fromulcerative colitis to Crohn's,
(41:40):
which is a very different painfrom the pain that was in my
intestines when I first gotdiagnosed with ulcerative
colitis, so like the pain in mystomach was more like nerve pain
and it was like burning pain.
Colitis so like the pain in mystomach was more like nerve pain
and it was like burning pain.
And then I've also had when Ifeel like I might be having
obstruction.
It's like throbbing but alsoradiating, and that usually is
(42:01):
there for like an hour or so andgoes away unless it unless it
really is like the beginnings ofan obstruction, and then it
usually lasts.
I think the only pain that Iget that is that comes and goes
like that is gas pain.
But not everybody experiencesgas pain.
Some people just have gas andthey pass the gas and they move
(42:21):
along with their lives and Idon't understand those people at
all.
Apparently that's like the norm.
I don't get it at all, becauseand I didn't have gas pain for
the probably 20 years because Ididn't have large intestines and
just with the J pouch the gaspain is like a new thing and it
is debilitating, but it is alsosometimes it stays if I can't
(42:43):
pass the gas and I have it forhours or days and sometimes if I
can pass the gas it's just likeyou said, like an hour and then
it's gone.
So I mean I feel like I havehad the rainbow of pain
experience.
The full spectrum of painexperience with IBD and pain
medication is not somethingthat's usually prescribed.
(43:05):
To be honest with you, I meanit took it.
It's why I'm so well-versed inthe kind of pain I'm feeling,
because I had to be able to sayI'm not just coming to you
telling you that I mean it tookit.
It's why I'm so well versed inthe kind of pain I'm feeling,
because I had to be able to sayI'm not just coming to you
telling you that I have painlike this.
Specific pain that I'm talkingabout is this and it feels like
this and it's hot and it'sshooting and it's cold and it's,
you know, whatever, radiating,whatever it is, and like you
said, caitlin, when you pickedup your shirt and said this is
(43:27):
where the pain is, I was able tosay right here, this area, this
is where the pain is.
Can you do something about that?
And also in the United Statesnowadays.
I know every state is differentbut, like the state that I live
in, I would have to go to apain specialist in order to get
pain medication.
Like primary camp can'tprescribe it, my GI can't
prescribe it, my OB-GYN can'tprescribe it, my rheumatologist
(43:51):
which that is mind-boggling tome.
Kaitlyn N. (43:53):
But like I would have to go to a pain specialist.
Robin Kingham (43:56):
Yeah, it's weird, like every doctor's office has
signs in it that says we cannotprescribe pain medication.
Kaitlyn N. (44:01):
And I'm like great.
Robin Kingham (44:02):
Where do you go to get that?
Who can?
Who can prescribe that?
I mean, I know we have theopioid epidemic in the country,
but there are people wholegitimately need pain
medication.
Kaitlyn N. (44:13):
Yeah, and the saddest part is that within my
microscopic colitis Facebookgroup, not all the doctors can
agree on whether or not thecondition involves pain, and
when you're trying to tell agroup of hundreds of people that
you're bound to upset a lot ofthem, especially when you have
the daily experience.
Robin Kingham (44:31):
You're bound to upset a lot of them, especially
when you have the dailyexperience that sounds like when
doctors tell women that, oh,this isn't going to hurt when
they're doing some kind ofinternal work and they're like,
oh, you're not going to feelthis, it doesn't hurt.
Really, sir Do you have a vulvaand a vagina and a cervix.
Alicia Barron (44:45):
What kind of gaslighting is that nonsense?
Yeah, it's like.
Don't tell me what myexperience of this is, that's so
invalidating.
And yeah, I'm with you.
I would be pissed off for thosepeople.
Even if pain wasn't my symptom,I'd be like no, no people,
that's not like.
You need to listen, right.
Kaitlyn N. (45:02):
I'm currently diving into research trying to
find a connection, if there's aconnection between microscopic
colitis and Raynaud's, becauseI've also developed that within
the past year and so I'm goingto see a rheumatologist within a
couple of months about that.
Luckily, I've been a lot betterwith tests.
Now, whenever one of my doctorssays you should get tested for
this, we should do an x-ray, anultrasound blood tests, I'm like
(45:25):
go ahead, because at this pointI just want answers and I want
something that works.
Alicia Barron (45:32):
Yeah, I think there is something.
I just want answers and I wantsomething that works.
Yeah, I think there issomething.
I mean it's kind of like whenthey talk about it being strange
that sometimes when people gettheir diagnosis, they're like
kind of happy about it.
You know, sometimes having thatanswer is just the thing that
you need in that moment becauseyou like, now I can take steps,
I can, I can create an actionplan associated with this.
I don't have to just wonderwhat the heck's going on and try
and try and try and sort of,you know, just throw spaghetti
(45:52):
at the wall.
I think it's how they say.
You know, like and just like.
That can be good for a lot ofpeople to have that answer and
I'm glad that that's helping youget over some of this fear.
It's just shitty that that'sthe case.
Kaitlyn N. (46:02):
Realizing that it's not just stress Thank God,
right, oh my God but also thesymptoms are stressful.
Just the buildup of symptomscause stress as well.
Robin Kingham (46:12):
Caitlin, it has been so lovely to get to know
you better on this call.
Thank you so much for joiningus on the show, but it is
unfortunately time for me to askthe last question.
What is the one thing that youwant the IBD community to know?
Kaitlyn N. (46:24):
I'm going to answer it with two things.
If that's okay with you, Ithink, more than anything, just
don't be afraid to self-advocatefor yourself and to separate
yourself from a doctor thatyou're not seeing results with.
I think when I was younger Iwas so adamant about keeping the
same doctor and they know mebetter than anyone but if you're
(46:44):
not seeing results, don't beafraid to change.
And then the other thing isthat microscopic colitis does
happen in younger people.
It's real, it's an IBD, andwe've been fighting to get it
recognized as an IBD.
Some organizations accept itand they have it on their
website along with Crohn's andulcerative colitis, and some
(47:05):
don't yet.
So we're just pushing for thatrecognition because hopefully
that'll lead to more research,more funding and get us the
answers that we need.
Alicia Barron (47:12):
Those are both great pieces of information to
share with our community.
For sure, we a hundred percentagree with you that if you're
not satisfied with your doctor,try another.
You know there's.
This is a long-termrelationship you're going to
have with this person.
You need to be able to trustthem.
You need to feel like that you,they, are part of your team, so
agree wholeheartedly.
And yeah, it sounds like thereis definitely much, many more
answers that need to be foundfor microscopic colitis, and so
(47:34):
we share your wish for there tobe more research funding and
more awareness raised here.
And, caitlin, like Robin said,it was such a pleasure to get to
know you.
Thank you so, so much for beingon the show and sharing your
stories with us and yourexperiences, and thank you
everybody else for listening andcheers everybody.
Cheers.
If you liked this episode,please rate, review, subscribe
(47:54):
and, even better, share it withyour friends.
Cheers.
Hi, I'm Alicia and I'm Robin, and you're
listening to Bowel Moments, thepodcast sharing real talk about
the realities of IBD Serve onthe rocks.
This week we talked to CaitlinNisnik.
Caitlin is our first guestliving with microscopic
lymphocytic colitis.
We talked to her about whatthat is, what it was like being
(00:21):
diagnosed, and some of thetreatment options that she's
tried.
We talked to her about whatit's like being an art teacher
and managing a classroom whilealso managing her microscopic
colitis.
We talked to her about how it'sinspired her art and all of the
beautiful pieces you can see onher Instagram account, and also
how it's inspired her to lookinto becoming a medical
illustrator Cheers.
Robin Kingham (00:43):
Hi everybody, welcome to Bell Moments.
This is Robin.
Hi everybody, welcome to bellmoments.
Alicia Barron (00:45):
this is robin hey everybody, this is alicia and
we are so excited to be joinedby caitlin nisnik.
Caitlin, welcome to the show.
Thank you for having me.
We are so excited to hear yourstory.
But first, first question foryou is what are you drinking?
Kaitlyn N. (00:59):
I'm drinking ginger peach turmeric tea that sounds
lovely.
Alicia Barron (01:02):
Robin, that sounds lovely had.
Robin Kingham (01:04):
I haven't had turmeric in a tea yet, but it
does sound very lovely.
Alicia Barron (01:08):
Is it earthy, then Does that make it kind of
like earthy?
Kaitlyn N. (01:11):
flavor.
Yeah, it's a nice herbal tea,okay, it's gentle which I like.
Alicia Barron (01:16):
Yeah, that is a nice thing.
Okay, great.
Robin Kingham (01:18):
I love ginger tea , and I usually do ginger lemon,
ginger lime though, but I likethe idea of ginger peach.
Alicia Barron (01:23):
I'm going to have to try that.
Robin Kingham (01:24):
Robin, what are you drinking?
I am still in recovery mode, soI'm drinking grape Powerade.
It's so exciting.
Alicia Barron (01:34):
That is my favorite flavor, though I grew
up drinking grape Kool-Aid andso, like anytime I can get one
of those like fantastically fakegrape flavored things, I'm like
hell yeah.
Robin Kingham (01:43):
Yes, agreed.
Alicia Barron (01:45):
Yeah, that's great.
I just ate peanut butter aswell.
Let me tell you what I neverwant to drink again Lemon, lime,
gatorade, never.
Robin Kingham (01:53):
Oh, is that because of the Poland?
I?
Alicia Barron (01:54):
drank so much of it and then threw it up.
So I'm done.
I'm done drinking lemon lime.
Let me tell you Anyway, sorry,I'm scarred by this, I'm scarred
by my experience, everyone.
Robin Kingham (02:04):
Imagine having to do seven of those in just two
years.
Kaitlyn N. (02:08):
No, you'll have to get a new flavor of Gatorade
every time.
I know.
Robin Kingham (02:11):
That's why I do Gatorade, that's why I do the
Gatorade Miralax, because I canat least have a different flavor
every time and it's not likesomething where it's not like
you get.
That's your only option.
You have to have that samelemon lime flavor that they put
in those big gallons of stuff.
That's why I do Miralax.
But I also get Zofran.
So I, when I start my prep, Itake Zofran before I even start
(02:33):
my prep.
Alicia Barron (02:34):
Okay, I'll keep that in mind for five years from
now when I need to get it doneagain.
Because, yeah, I was.
This is the second time andboth times I was like vomiting.
I was so nauseous.
So I don't know if it's justlike the volume of liquid, or
whether it's the viscosity, orwhether it's just I don't know,
I don't know.
Robin Kingham (02:49):
But um Alicia, what?
What are you drinking right now?
Alicia Barron (02:53):
Cause you're gonna have to cut all of that
out.
I am drinking Waterloo cherrylimeade.
It is quite good.
Actually, I'm a big fan of theWaterloo's, you know.
Thank you to guest Caroline oflike episode 10.
I think I mean forever ago.
Who introduced us to Waterloo?
I'm a big fan.
I'm a big fan of it, but hadWaterloo's Really, I feel like
you would like them.
They're, they've got quite abit of flavor.
(03:22):
Like it's a nice like slightlyit in a like a champagne glass.
No, I like it a little.
I mean it's.
It's a little bit stronger of aflavor, but slightly less.
I feel like slightly that'sbubbly than the.
Robin Kingham (03:32):
Oh, that would be good for me.
Lacroix is too bubbly for me.
Alicia Barron (03:35):
I mean, don't quote me on this, Cause you are
the bubble expert on sparklingwaters.
Obviously not champagne, causethat's me, but for sparkling
waters, yeah.
So I feel like it is a littleless bubbly, so you might like
that.
I'm going to have to try it,yeah, okay, I'm a big fan.
Anyway, this isn't aboutdrinking or Zofran or any of
that.
Robin Kingham (03:54):
It's a little bit about drinking, just a little
bit.
Alicia Barron (04:00):
You know, when she said to me like no alcohol
today, I was like dang it, likeI thought I could have a glass
of wine.
I have a lovely, lovely roséopen in my fridge.
I guess I won't be drinking it.
Robin Kingham (04:08):
Next week.
Next week For recordingpurposes.
Alicia Barron (04:12):
Oh, I was like she told me just tonight I was
like no, I just meant forrecording On to the show.
Caitlin, it's not aboutdrinking, it's not about bubbly
waters, it is about you.
So tell us your IBD story.
What brought you into ourcommunity?
Kaitlyn N. (04:26):
So hi everyone.
I'm an artist and educator andI was diagnosed with microscopic
colitis four and a half yearsago, but I've probably suffered
with symptoms for over six yearsnow.
So my symptoms started inundergrad, when I was in college
for my art degree, and I justthought college was super
stressful.
I thought maybe I wasn't usedto someone else's cooking and
(04:50):
the cafeteria food was a littleoff some days and I found myself
always having to stop bydifferent bathrooms on my way to
class or on my way to the dorms, but it was convenient, so I
kind of ignored it for a while.
Once I graduated, I got a jobtwo months later and I started
teaching and my symptoms kind ofstarted getting progressively
(05:12):
worse.
I had way more frequency inbowel movements, I had a lot
more pain going on and mydoctors kind of just chalked it
up to stress and I was like,yeah, the stress of a new job, I
get it.
Then I finally started a lowresidency master's program,
because in New York State youneed your master's to maintain
your teaching license.
So then I went to the master'sprogram.
(05:33):
It was a 10-day residency everysix months and that time it was
immediate.
After every meal I would getintense pain and just be running
to the bathroom.
And we had a very set schedulein grad school where you went
immediately from dinner to alecture center, to an artist
lecture and then you hadcritiques and stuff.
(05:54):
So I really needed to functionand I was finding it extremely
hard to do so and then I thoughtit would get better when I got
home.
And it didn't.
It just kind of stayed that wayfor months and months and my
pain was getting worse.
I was losing weight drasticallyand I had fatigue, diarrhea,
presyncope before bowelmovements and this time, coming
(06:16):
back, I have long commutes.
I'm in upstate New York and youknow I have a teaching job, so
there were no like frequentbathrooms to save me.
And I've always had a phobia ofblood and doctors and I have
the fun history of fainting atthe cider thought of blood.
So I've always been weary ofdoctors and I never wanted to
(06:37):
get any testing done.
I always just wanted answers,no tests.
But after coming back from thefirst residency I knew I wasn't
going to make it through gradschool without having tests.
So in early 2020, I got my firstcolonoscopy and I was diagnosed
by biopsy results withmicroscopic lymphocytic colitis
and basically it's a lesserknown IBD that can only be
(07:00):
diagnosed through colonoscopybiopsies and according to one
Danish study that theMicroscopic Colitis Foundation
highlighted just a couple ofdays ago, rates of microscopic
colitis are outpacing ulcerativecolitis and Crohn's disease, so
it's an up and coming illness.
There's two different typeslymphocytic colitis, which is
what I have, and collagenouscolitis, and basically mine is.
(07:24):
The pathology of it is that itshows an abundance of
lymphocytes in like epithelialtissue, and collagenous colitis
just has a thicker collagen bandwithin their biopsy images, and
most people diagnosed with thedisease are middle-aged women
and I'm in my twenties.
And afterwards, after I got myresults, the pandemic
(07:47):
immediately started and so I wasput on my first few rounds of
budesonide and I was told toquit cold turkey and my symptoms
immediately came right back andI jumped to another doctor
because I realized you're notsupposed to just stop butasinide
and other steroids and shelistened to all of my phobias
and fears of testing and needles, so she decided to have me do a
(08:12):
ton of breath tests, so I didsome for bacterial overgrowth, I
did some for lactoseintolerance and fructose
intolerance, and the fructoseintolerance is what came back as
positive as well.
So I have to avoid a lot ofsugary things like fruit juices
and stuff like that.
She eventually ran out of teststo do for me so she gave me to
(08:35):
another doctor in the city andagain during the pandemic.
So I was meeting with hervirtually and going to virtual
appointments.
She put me on, I want to say,about 10 different pills and
supplements, all at differenttimes of the day, still on
Budesonide for two years, butall different kinds of
supplements and powders andthings that I would just have
(08:57):
alarms going off throughout theday.
I'd have things I'd have tostir into tea, things I'd have
to take with this or that, andit just became a lot of upkeep
and my days were revolvingaround pills and I still wasn't
getting any better.
And then I got to my currentgastro number four and he has me
on dicyclamine for the pain,which is hit or miss when it
(09:18):
works.
It's an antispasmodic that'ssupposed to slow down your gut
and he's had me on three roundsof the drug Xifaxin.
Through the years I've tried alot of lifestyle and diet
changes.
I met with a nutritionist atone point but it's hard
committing to any plan 100% as ateacher.
I come home I'm tired at theend of the day, or I've stayed
late for my clubs and classes,and then you know, to cook a
(09:40):
special meal or to meal prep.
Sometimes I find that the mealsthat I prep I have to throw out
because they cause a flare up.
So you know it's a little hardgoing round and round.
And Zyfaxin has been prettywell.
I did my last one in August.
I finished my last round and itusually lasts like it gives me
a good one to two months beforeI start with symptoms again.
(10:03):
So right now I'm doing prettywell and as an artist my
practice has kind of evolvedaround my disease.
I think as I was switchingdoctors I wanted to become a
more informed patient.
So I do that through my art andmy art kind of revolves around
my studies and they feed intoeach other.
I've been doing pathologyslides for the past couple of
(10:25):
months and for a year I've beenmaking little tiny watercolor
paper cuts of little mini colonsand artery systems and I have a
rule that for when I'm doingresearch, every time I don't
know a word, I have to make anew slide for it.
So I love going down rabbitholes and just trying to figure
out as much as I can, and I'mhoping to eventually become a
(10:48):
medical illustrator.
That would be the goal.
I always tell my students thatit's okay to be scared during
dissection labs.
I've been helping them out withtheir shark dissection labs in
seventh grade which is traditionat our school for the past two
years and it's going to be threeyears pretty soon and they're
always so scared and squeamishand I'm like I get it.
I've been that way my wholelife.
(11:09):
It took me until I was 27 to beokay doing it.
So they have plenty of time togrow and that is my story thus
far.
Alicia Barron (11:17):
Wow, you are definitely the first person
we've had that's had amicroscopic colitis.
I am curious because it's stillautoimmune, it's still an
inflammatory bowel disease.
So I'm curious why they don'tuse like kind of more
traditional medicines, like someof the you know, the Remicades
and the Humeras and stuff likethat.
Are they just not effectiveagainst microscopic colitis?
Kaitlyn N. (11:37):
It's hard to say.
I'm part of a Facebookcommunity that deals with
patients that have microscopiccolitis and we've all been put
on so many different treatmentsand plans.
Some things that work for somepeople don't work for everyone.
The go-to for most doctors isbudesonide, so they put us on a
few rounds of that to see if itworks.
Another popular one that Ipersonally hate is the Pepto
(11:57):
protocol, which you takePepto-Bismol three times a day
and just keep going with that.
Robin Kingham (12:04):
And it's wild.
Alicia Barron (12:05):
Is it because the diarrhea yes, yeah, but that
doesn't do anything about theinflammation, like that's what
I'm so curious.
Robin Kingham (12:11):
Yes, I mean, even the Zyvaxin is like for
diarrhea.
Alicia Barron (12:16):
Yes, oh, you looked at it.
I think you're looking that up,cause I was like I've not heard
that one.
Robin Kingham (12:20):
It's like prescribing people with IBS to
manage diarrhea, which I meanour diarrhea is from a different
reason than people with IBS, sothat it's what we definitely
have to have a doctor on here toget to the bottom of this.
Alicia Barron (12:32):
I'm genuinely confused about this one and
slightly angry for you, but Ithink that just might be my
state today.
But yeah, I guess this.
It doesn't make sense becauseif it's autoimmune, you'd assume
that you'd be attempting toregulate the immune system,
especially if it's a lymphocyticone, which I know there are.
I mean, I'm speaking as if Iknow anything, but I think some
(12:57):
of the IBD medications out theredo work on T cells, which are
lymphocytic cells, right, soyou'd assume that that would be
good for somebody withmicroscopic colitis Weird.
Robin Kingham (13:02):
We'll be back with more information about this
, people, don't worry.
Alicia Barron (13:05):
Don colitis Weird .
We'll be back with moreinformation about this.
People, Don't worry.
Don't take Alicia's medicaladvice.
Kaitlyn N. (13:07):
The interesting part is that most doctors can
agree on anything withmicroscopic colitis, from what
age you can get diagnosed withthe disease to is it affected by
food or not?
Some doctors say you have tochange your entire diet, get a
dietician.
And some people say, like fooddoesn't affect it at all, like
you shouldn't be changinganything.
Alicia Barron (13:28):
Well, I mean, that's just.
Everybody in IBD land has heardthat.
Kaitlyn N. (13:31):
Oh yeah.
Alicia Barron (13:31):
Oh, food isn't a thing you know and it's like,
well, clearly it is.
I mean you, yeah, so that to me, I just kind of roll my eyes at
that one and go sure, whateveryou know, eventually we'll have
the research that backs up that.
Diet is probably a part of this.
But yeah, I'm just mystified bythis one that is so fascinating
(13:52):
Right now.
Is there kind of a?
You said it's typicallymiddle-aged women that end up
getting diagnosed with this.
So is there, like it's neverdiagnosed in kids or it's very
rarely diagnosed in kids, Likewhy went by middle-aged women?
And if you don't know that youcan tell me that that's fine.
Kaitlyn N. (14:00):
In my personal opinion, because I don't know
the real answer, but I would saythat that's when majority of
people have their firstcolonoscopy is yeah, so when
they're middle aged.
And then women are more likelyto go to the doctors with
symptoms, and my family is aperfect example of that.
My dad is so stubborn and herefuses to see a doctor for the
exact same symptoms.
Alicia Barron (14:22):
Cool, yep, that sounds about right.
Yeah Well, and frankly,probably it's not till
middle-aged, because they'vebeen complaining about stuff and
it's been like, oh, it's juststress, you're just eating too
many, whatever, and like you getsort of patted on the head and
sent home here's youranti-anxiety medicine.
Kaitlyn N. (14:37):
Yes, they just did that to me.
They were like oh, you're notdrinking enough and you're
having issues because you'restressed and I, I'm the least
stressed, I've ever been Welland I'm sorry, but like who
doesn't live with stress intheir life?
Alicia Barron (14:50):
Like we all have stress, it's the way life is
Like.
You can't just use that as somesort of like you know, all
encompassing excuse for whysomebody is having symptoms.
That's dumb Soapbox.
So okay, you said your dad hassimilar symptoms.
Do you have a family history ofinflammatory bowel disease or
other?
No, no no.
(15:12):
I wish that it would give mesomething to bring to doctors,
right?
Yeah, that's so strange.
I mean, I had heard thatthere's like an increase in
people being diagnosed some ofthis stuff that are younger
people, I don't know.
Granted, I think I was onReddit, so you can't take that
with a grain of salt.
There was lots of likemicroplastics, so who knows,
maybe that's it.
Reddit is an interesting place.
Robin Kingham (15:28):
Just love how you're like jazz hands micro.
Reddit is an interesting place.
Just love how you're like jazzhands microplastics.
And then move on to the nextthing.
Alicia Barron (15:33):
I mean that's what they were yelling about.
There was lots of like GMOs,microplastics.
It's like, well, everything'sgenetically modified now, but
maybe not the same way.
Okay, I want to learn moreabout these testing they did for
the like fructose intoleranceand lactose intolerance and
stuff like that.
Is that again like kind of thisidea that diet is contributing
(15:55):
factor and thus, if you sort ofcut this out, because fructose
is basically like fruit sugar?
Kaitlyn N. (15:57):
Yes, so you just don't eat fruit.
So the thought from that doctorfor me was that my diet could
be causing inflammation andcausing a bit of an issue, even
though we went over all my foodsand it didn't seem like it.
The interesting part for thatwas, for the hydrogen breath
test, I needed to have aspecific diet the day before, so
for 24 hours before I couldonly eat broth, chicken, plain
(16:21):
chicken and rice, which is avery depressing day for me every
time I did these tests, but Iwould that would trigger
symptoms for me every time I didthese tests.
But I would.
That would trigger symptoms forme every single time.
And eggs were on there as well,but I would always be running
to the bathroom just from that.
Alicia Barron (16:37):
It's only chicken products you can have.
That's really strange.
That is, yeah, that's the firsttime I've heard of just like I
mean, robin, have you heard ofany?
Have you done any of thesetests?
Robin Kingham (16:48):
Breath tests.
No, Look again, Alicia and Ilike to have scientific data
backed opinions in here, butthis sounds a little bit like
these two of the doctors thatyou saw have bought into the
wellness industry and we're notactually using scientific
research to inform theirpractice and what they were
(17:12):
recommending to you, becausethat sounds like it's deep in
the wellness industry and not inactual medical care.
Kaitlyn N. (17:19):
Oh, absolutely, yeah, One of my primary care
physicians, way back when I toldher about my symptoms and she
gave me a pamphlet on becoming avegetarian, which was a book
that she wrote.
Oh bless.
And then she charged me for asick visit instead of an annual.
Oh my God.
Alicia Barron (17:38):
Oh, people, okay, Listen, so many opinions about
these people.
I want to dig in a little bitmore about your fear of doctors
and your fear of procedures.
You mentioned fainting.
Robin Kingham (17:50):
That's where I was going to go.
Alicia Barron (17:51):
Yeah, you mentioned fainting with blood.
Number one I want to know howyou do shark autopsies.
Autopsies, yes, is that what itis Okay?
Shark autopsies while beingafraid of blood?
Oh my God.
Robin Kingham (18:02):
Wait, that is what I'm going to call Wait, is
that not what?
What is it?
Alicia Barron (18:06):
called All of a sudden it's like not in my brain
Dissection, dissection.
Robin Kingham (18:16):
That's it.
It's going to be autopsies fromnow on.
That is amazing.
Makes it sound moreprofessional Right.
Alicia Barron (18:25):
It makes you all sound like criminologists over
there.
That involves blood, surely?
So like?
Is there a difference betweenthat type of blood and like
human blood?
Is it the thought of your blood?
Is talking to this going tomake you faint?
Let's start there, okay good.
Kaitlyn N. (18:34):
I was like oh God.
Alicia Barron (18:35):
All of a sudden, she just slumps down in her
chair and she's gone, okay.
So yeah, is it all blood, yourblood?
Tell us a little bit more aboutthis.
Kaitlyn N. (18:42):
Yeah, yeah.
So ever since I've been littleI've had a fear of blood,
doctors and needles and they allkind of go together.
Yeah, ever since I was little Iwas terrified of finger sticks.
Oh my gosh, the worst thingever for me.
Even things like blood pressurewould scare me.
I remember throwing up on anurse when she tried doing the
blood pressure cuff on me, and Ialso have a history of fainting
(19:06):
when getting shots.
I once took down a whole row ofchairs on my way out of the
doctor's office and my mom.
I just kind of started tippingover and then just collapsed.
Robin Kingham (19:17):
So yeah, oh, my goodness gracious, it was a fun
childhood.
How do you overcome this fearto be able to go to the doctor
and then, like you said, youeventually came to terms with
the fact that you had to havetests run in order to get
treatment?
How do you?
I'm really fascinated by this,because I know we've talked to
(19:37):
people that have fear of needlesand probably fear of blood too,
but not the way that youdescribed it.
I mean, you have to get over alot of fear in order to be able
to go to the doctor to havethese tests run.
I don't know if you had bloodystool as part of your symptoms,
but I know a lot of people withIBD do, and I have blood all the
time.
(19:57):
So, like I mean, I can'timagine fainting every time I go
to the bathroom.
You know what I mean.
Like, if there's blood, thereis the potential for blood at
all times, even though peoplehave told me that any amount of
blood is too much blood.
I disagree, but I digress also.
I'm apparently on a tangent.
How did you overcome the fear?
Kaitlyn N. (20:18):
So to answer that, I'm going to go to the most
dramatic episode first, when Iwas in high school so a little
bit older than the otherfainting episodes I was in
health class and we had avisitor come to talk to us about
donating blood and there wereno pictures.
She was just talking about itand I remember sitting there at
(20:39):
my desk saying uh-oh, andimmediately out cold, fainting,
and my pregnant teacher had todrag me out of the room by my
feet into the hallway and shewas trying to like lean me up
against a window and I passedout again and so she left me in
the hallway.
She called a nurse to come witha wheelchair and the bell rang
(21:00):
like perfect timing, andeveryone was flooding out into
the hallway and walking to theirclass and I was just laying on
the floor.
It was fantastic.
So, yeah, I had to overcome alot.
I've still been terrified ofblood and needles.
I had to get my COVID shotworking out of school in 2020.
And I was crying so hard Ididn't know how I was going to
(21:20):
make it through that.
Okay, but yeah, I was veryclear with my doctors that, like
, no invasive testing, like ohmy gosh, even even just shots
are just so much for me tohandle.
So when they said, oh, we needblood tests like we should get
you tested for everything, youshould do a colonoscopy the
worst thing I could think of was, oh my gosh, they're going to
do an IV and I can't handle that.
(21:41):
It was really grad school thatgave me the push I would not
have.
I would have been 29 and stillsuffering with diarrhea and not
knowing what in the world wasgoing on if it hadn't been for
grad school, because I knewthere was so much work I had to
do and I was not functioning andI knew something had to change
and I was down to 90 pounds.
(22:01):
That's the lowest I got.
So that was when I knew it waslike this is now or never.
This needs to happen.
And it was still the mosttraumatic thing, you know, just
crying and howling and gettingthe IV set in.
But I've done it twice more andI've gotten through it every
time.
I'm working with a therapistright now on my blood phobia and
(22:23):
my needle and doctor phobia.
So we're trying to get ittogether before the next
colonoscopy happens, just so Ican be a little bit better with
IVs.
But I think artistically.
I like to think of thingsobjectively and logically, if I
can, and break them down intosimple shapes and forms.
That's just how I can drawcomplex shapes.
(22:43):
So I started doing the samething with the colon and
pictures of it.
So that's an easy way for me tokind of start to get over my
fear of blood is to think aboutit in terms of color and the
shape of the vessels and thingslike that.
It helps also having a distancebetween the subject matter.
You know it's on the screen andI'm separate and I can close my
(23:06):
laptop at any time.
Going from that to sharkdissection is another big jump,
because then it's like theformaldehyde and it's the
experience of a dissection.
Luckily they're all drained ofblood.
I believe they have like liquidlatex or something in there
that's meant to mimic blood andit's red and it's dyed red to
look like that.
But the actual shark is prettyclean and you can distinguish
(23:28):
between like different colors oforgans.
So it's not too bad If you sayso.
Alicia Barron (23:35):
It still seems like it'd be kind of traumatic,
frankly, but it's not a personand it's not you, so I think
that probably would help.
But I applaud you for workingwith a therapist on this because
, yeah, this is prettycomplicating for your life, you
know, and your medical care and,just in general, like you said,
just the fact that you got aCOVID vaccine and that was the
traumatic experience that youhad with it.
So I applaud you for workingwith the therapist.
(23:56):
I will say there are somereally great resources out there
, especially on injections,because there was a lot of
people that, during the COVIDpandemic, were afraid of needles
and so they.
There's been a bunch ofinformation put out there about,
like you know, things you cando to help with needle fear.
Meg Foundation has some reallygood ones too.
It's the Meg M-E-G, like theWomen's Name Foundation.
They have some really goodresources as well of like
(24:17):
putting together your poke plan,which is like this is how I
want you, as the provider, tosupport me in this moment.
Like I want this kind of music,or I want you to like count to
three, or I don't want you tocount at all and I want to look,
or I don't want to look like itsort of helps you put together
like a plan for how you want totackle this.
And yeah, the IV thing is iswild, because of course you know
the needle doesn't stay in you,but it's still something in you
(24:39):
and I know that's really kindof weird for a lot of people.
So that's, that's a wholedifferent deck of cards.
Kaitlyn N. (24:44):
Yeah, my therapist and I have worked on a plan,
Like you said.
I have like a stress ball thatI bring and I have to sit in
like a certain chair facing acertain way.
And they understand, They'veseen me and I think my primary
care physician also wrote in mychart difficult patient getting
blood drawn.
So they know that anything theycan do to help so that I'm not
(25:05):
hollering and crying like atoddler works out well.
Alicia Barron (25:09):
Yeah, yeah, I think I don't love needles.
It's not my favorite, but Icause I think I'm.
I'm usually dehydrated though,so unfortunately that's kind of
my thing is that you know, but Iwould imagine that happens for
you as well.
If you're having like diarrhea,you're going to get dehydrated,
and so I'm sure that makes iteven extra harder, because your
veins are harder to access asexcess as well, so it doesn't
help.
Kaitlyn N. (25:27):
Yes, and, as Robin said, I didn't answer your
question before.
I'm sorry.
Microscopic colitis doesn'tusually produce blood in the
stools, so thank God I touchedthat bullet.
Alicia Barron (25:38):
Yeah, I mean, if you're going to dodge one,
that's a good one for somebodylike you.
For sure.
Let's stick with doctors for alittle while.
Because you mentioned you're onyour fourth, fifth, fourth,
fourth GI and that you kind of,as you were going along,
determined at some point thatthis was not the right provider
for you, and that's one of thethings you wrote on your
questionnaire too is just, youknow, like the importance of
finding the right fit for you.
So talk to us a little bitabout, kind of your, what
(25:59):
metrics you put in place to beable to kind of find the right
doctor for you.
Kaitlyn N. (26:02):
Yeah.
So my first doctor wanted tokeep me on Budesonide.
She thought Budesonide was theend-all, be-all and some
providers agree that you can beon it for a long time at a low
dose and I knew I wantedsomething else.
I didn't want to stay on a drugmy whole life.
So that's what led me to changeand I went to a more holistic
practice and that's why theyfocused on non-invasive
(26:23):
treatments like breath tests,and she referred me to the other
side.
I didn't make the choice toleave that practice, but she
referred me to another doctorand that was the one that was
toughest to leave because shewas known in her field and it
was.
I thought that I was getting thebest treatment that I could and
that's why I was on so manysupplements and she's really
making an effort and I had adietician.
(26:44):
But the moment it came down towas me crying during a Zoom call
a patient portal kind of Zoomand me telling her I'm in so
much pain all the time and Isaid I have a spot I can point
to it on my body and I tiltedthe camera down and I lifted up
my shirt and I was like here isthe pain and she said there's no
(27:04):
organs there that would causethat, and that just tore a hole
in my heart.
And that was the moment I knewthat I needed to study up and I
needed to become as informed ashumanly possible and take as
many notes as I could, and Ijust never wanted to feel that
helpless again and that's whatmade me leave.
Alicia Barron (27:22):
So when you went to your next provider, did you
sort of interview them before?
Do you kind of have a littlebit more of a like kind of
consult before you said, yeah,this is the person for me.
Kaitlyn N. (27:31):
Yes, I definitely did.
I don't want to say I'm acommitment phobe, but I
definitely wanted to make surethat it was the right fit
because I had wasted so manyyears with other doctors and
trying medications that weren'tright.
But he is absolutely amazing.
I can't say enough good abouthim.
He walks into your room and youimmediately feel at ease.
He's read the research, he'sdoing his homework and he's not
(27:54):
just saying the same thing atevery visit.
He's like okay, we're at thishurdle, what can we do to solve
that?
And I love that.
He knows about my phobia and heaccepts it for what it is.
Alicia Barron (28:05):
That's important, that's really good that you
found somebody that you feelreally confident in and that
makes you sort of have thatsense of calm, that point and a
lot of doodles.
Kaitlyn N. (28:36):
But then it turned into these little like cut paper
pieces that were so teeny tiny.
I don't have a lot of space athome to work, so I usually make
very, very tiny pieces of artthat I can just be like working
on on my lap, and I startedfeeling that these were almost
like surrogate colons in a way,like just tending to them and
just putting all the littledetails on them.
It felt like a piece of myselfthat I could control and a piece
(28:57):
of myself that I could keepsafe.
So I started putting them intolittle petri dishes as a way of
protecting them from theelements and just keeping their
fragile forms intact, and Ithink that's a method of
self-care for me.
It relaxes me and they just areso fun to do.
And then, from there, a couplemonths ago, I started doing
(29:17):
watercolor paintings of biopsiesand of pathology slides that I
was finding online and lookingat different staining techniques
for microscopic colitis andwhat the condition looks like
under certain conditions, andthat led me to my current series
.
Oh, that's so cool.
Yeah, so these aren't on mywebsite yet, but this is an
(29:38):
abundance of lymphocytes and Iam a big believer in spending a
ton of time on detail.
So I like that I have somethingthat can take a long period of
time and I can stop and walkaway when I need to, and then I
can come back to it every nightafter I'm done teaching.
What is that watercolor?
Like, what is it?
Yeah, so I've been usingwatercolor this one is Gamori's
(30:02):
trichrome, I believe staining,and I've just been drawn to like
the beautiful colors and somestaining techniques that I found
in my microscopic colitisresearch papers.
It's just so jarring to seebecause obviously you want the
lymphocytes to stand out so thatyou can count them and make
sure, like the condition islegitimate, and so some of them,
(30:24):
the colors that they use, arejust so beautiful and jarring at
the same time, I would say.
Alicia Barron (30:36):
Hey Ball Moments fans.
This is Alicia, probablyinterrupting myself, frankly
letting you know that Robin andI will be taking a little break
for the Thanksgiving holidays,and so your next episode will
come out on December 4th, but Iwant to take this moment in the
season of gratitude to let youknow how much we are so
incredibly grateful for each andevery one of you for listening
to the show.
Thank you also to our guestsfor sharing their amazing
(30:58):
stories and their resilience.
Thank you to our medical guestsfor sharing their passion and
their dedication, and thank youto our researchers for their
creativity and drive and forsharing your stories of working
on behalf of our community everysingle day.
So cheers everyone.
Happy Thanksgiving.
Yeah, what an interestingjuxtaposition of like
(31:21):
highlighting something that'swrong essentially that's like
overgrowing but putting it intosomething that looks so
beautiful.
Because, yeah, that is that isreally beautiful.
Wow, that's amazing you have youalways been an artist Like?
Do you just like?
Were you born just being like?
I look at the world in adifferent way.
Um.
Kaitlyn N. (31:36):
I wouldn't say born with the talent.
No, I was blessed to have a lotof great art teachers growing
up and they kind of fueled apassion for art in me and it's
just something that I couldalways turn to and something
that I could make into my own.
And that creative spirit justnever left and I knew I wanted
to become an art teacher, justlike them.
(31:57):
And I believe it's an artteacher's duty to have like a
personal practice outside ofwork.
So that's what I'm striving todo with my watercolor colons
(32:34):
no-transcript.
Alicia Barron (32:38):
Try to do stuff and my sister-in-law would be
like I don't.
I don't get what you're saying,but it was like her brain just
functioned like in picturesinstead of in words.
So is that you too?
I'm just like so fascinated bythis.
Kaitlyn N. (32:49):
Yeah, I would say I'm a visual learner.
Half of the notes I make don'tmake sense unless I make
pictures and sketches for themor I find some pictures online.
Yeah, I find that I learn waybetter visually, but I always
give my students the option.
I always pair, like visual withwords and audio and all that
good stuff.
Alicia Barron (33:08):
That's great teaching.
Talk to me about medicalillustration, because I think
this is that I think you'd begreat at it, number one, just
because it's like I'm superimpressed with the ones that you
produce.
But what is the call for this?
Like, is there?
It?
Does one find a job listed onLinkedIn for this?
Like, how does this work?
Because I mean, it's such alike, such a cool idea, but you
have to go work for, like, abook publisher.
Kaitlyn N. (33:28):
So it's an interesting field.
The more I learn about it, themore I love.
There's some where you can getinto, like courtroom sketches
and things like that forillustrating like an accident
and what it did to the body sothat a jury can understand it.
Then there's the publishingside of it, where you're working
with either researchers or afoundation or a school, a
(33:50):
university, and you're doingillustrations for them.
And then there's some thatspecialize in videos and
animation.
That's a whole new field thatis coming up and it's beautiful
to see what they can do withcells and going through the body
.
It reminds me of a high defversion of the magic school bus
and that makes a child in mejust so happy to see.
(34:12):
I've been waiting.
I would love to be a part ofthe field school bus and that
makes a child in me just sohappy to see.
I've been waiting.
I would love to be a part ofthe field in some way, just to
spread awareness of little knowndiseases like microscopic
colitis and just to spreadinformation about little known
diseases like microscopiccolitis.
But I'm also hesitant becauseof AI right now and the way the
world is going.
(34:32):
I want to see what a graphicdesign illustrator will be doing
in five years time and ifthey'll be replaced by AI.
Alicia Barron (34:40):
I think it's wise that you're thinking about that
because, yeah, the AI thingespecially is getting kind of
scary as it relates to likecopying people's voices or like
creating basically virtualvoices that are like sound just
like regular people and copyingmusic and things like that.
So it's just, yeah, I thinkthat's probably wise to wonder
about that for sure, but thatjust makes me sad.
Robin Kingham (35:01):
You think of AI's capabilities in research and
modeling, and it can do so muchmore, so much faster than what
we can in our human brains.
Because Dr Moss, when he was on, was talking about AI and
research, and so it's like is itgoing to do that?
Or is it just the fearmongering of it being it's not
(35:23):
new, but it's really new beingso public and public having
access to it?
So is it just the fear of thenew?
You know, you know, you know usAmericans.
We want things to be hard untilwe get the hang of the easy
thing.
And then we're like, oh yeah,let's make everything easy.
Alicia Barron (35:41):
So you know, I think it's just the wild, wild
west.
I mean, I think that's theproblem is that, like you know,
technology is outpacingregulation, and so it's like
nobody's governing this at all,and so that's the scary part for
me, I think.
Kaitlyn N. (35:52):
You won't believe it, but every year I do animal
drawing lessons with my eighthgraders, and last year was the
first year where I was like, ohmy gosh, this top page of Google
results were all AI images.
And so then you have to kind oftell the kids what's the
difference between like a tigerthat's photographed versus like
the AI tiger, and sometimes it'svery, very hard to tell.
(36:13):
I'm an illustrator, a volunteerillustrator for Knowing Neurons
, which is a neuroscience group,and so I illustrate articles
and things for them in my freetime, and I just finished an
illustration that maybe took, Iwant to say, 25 hours and yeah,
knowing that AI can replace thatin a second.
It doesn't have the same loveand feel of the human hand, but
(36:35):
if companies know they can getsomething done quickly,
unfortunately, a lot of themtake the easy way out.
I would love to tell viewers,if you have the time, to look on
google for ai medicalillustration especially, there's
a rat or mouse one and it'shorrifying Like AI is starting
to try to do medicalillustrations and to an
(36:56):
untrained eye that doesn't knowEnglish, you would think that it
might be real and it's justmaking up words.
It's putting appendages wherethey don't need to go and it's
very horrifying.
Alicia Barron (37:08):
I just yeah, I just looked it up and this is
some.
This is some weird shit.
There's a typewriter insomebody's brain.
There's a bunch of peopleinside this mouse huh oh my god
oh wow, this is.
This is strange, this is really.
Oh no, this is medicalillustration of mythical
creatures they're mythical.
Kaitlyn N. (37:28):
They don't.
I can do that.
You can mess with the mythicalcreatures perfectly fine.
Alicia Barron (37:31):
The internet is a strange place.
It makes me sad that that's thecase, though, because, like I
mean, I guess I can understandthe sort of economics of this.
Like for you to produce onepiece that takes you 25 hours if
you're paid an hourly rate foryour time, that's a lot more
expensive for them to just gointo, like chat GPT, and say,
come up with a model for a mouse.
You know neuro system.
So I guess I can understand theeconomics behind it, but it
(37:53):
does feel like it sort of ittakes the soul out of it a
little bit, absolutely.
Talk to us a little bit aboutbeing an art teacher, because
being a teacher has veryspecific hours, just like you
were talking about going to gradschool and having, like, at
this time you go here, at thistime you go here.
As a teacher, you have specifictimes that you must be in the
classroom teaching.
How do you cope with that withyour microscopic colitis?
Kaitlyn N. (38:14):
A lot of meal prep is the one thing that keeps me
functioning.
On most days I always haveoatmeal for breakfast and I
can't change that, because everytime I try to experiment then
it means that I'm running to thebathroom before my day even
starts and as soon as I get toschool.
So I'm trying to set myself upfor a good day and then hoping
(38:35):
that the meal that I prepped forlunch doesn't make me go into
like a pain spiral.
So I usually repeat a lot ofthe same meals throughout the
week and as I go I'm lucky inthat my schedule has a couple
classes and then a break, andthen a couple classes and then a
break.
So as long as I get to schoolearly, I still have time for
those bathroom breaks if andwhen I need them.
(38:55):
Most of the time I'm justsurviving on Imodium and then my
doctor's like wait a minute,you don't have enough bowel
movements.
Or you know, you're saying youhave diarrhea but you're not
having enough bowel movementsand I'm like yes, because I'm
taking Imodium immediately sothat I can function throughout a
normal school day.
Alicia Barron (39:12):
So a lot of Imodium, a lot of meal prepping
and just sort of pre-preparingfor your day.
How open are you with yourstudents about this, like, do
you tell them that, hey, I mightneed to?
Kaitlyn N. (39:21):
book it out of here .
So I do have a group of teacherfriends on speed dial that I
can call or text and say I needyou to cover class, just in the
rare case that I'm experiencingan episode.
Most of my students I would saythe older ones know that there
are some days when I'm just in alot of pain, especially the
classes that happen after lunch.
(39:43):
So sometimes I might use mywheelie chair as just a normal
accommodation and kind of pushmyself around to the different
tables, or I just might need asecond to breathe.
They also know about myfructose intolerance.
They don't really know about mycondition per se, but they do
know I have fructose intolerancebecause then I don't feel as
guilty for saying no when theybring in snacks.
Alicia Barron (40:04):
Yeah, that's a good one to use.
I would use that too.
I think that makes sense.
I think that it's a good way ofgoing about finding kind of a
balance for your classroom aswell, because I'm sure you don't
want to share too muchinformation and stuff.
But so I'm curious with thepain.
It doesn't sound like they'vegiven you like pain medicine.
It sounds like it was likeantispasmodics and some of the
other kinds of treatmentRationale for that.
Kaitlyn N. (40:39):
Did they give you a rationale for why they're not
giving you, just like, a painreliever?
They're convinced thatdicyclamine will work.
So it's not working?
Yeah, I deal with it.
Thankfully, I have a veryforgetful memory when it comes
to pain.
So my doctor will ask me areyou fine?
I'm like, yeah, I've been doinggreat.
And then I'll look at my dailylog and I'll be like, oh wow, I
was in like four out of fourpain some of these days.
But it comes and goes veryquickly with me.
So it's hard to find somethingin the moment because it usually
(41:00):
happens.
Sometimes it happens like aftera meal and it comes very
quickly and then it goes awaylike within an hour.
So by the time anything wouldstart working it would be too
late.
Alicia Barron (41:11):
I mean Robin, you've had pain issues with your
Crohn's disease.
Have you experienced somethingsimilar, or is yours more of
like a pain that comes and stayskind of situation?
Robin Kingham (41:20):
I have experienced multiple types of
pain, which is I said this acouple of times on the show
being able to describe your painmore specifically is so
important when you're talking toyour doctor.
So I have had pain in mystomach, which is what led to my
diagnosis changing fromulcerative colitis to Crohn's,
(41:40):
which is a very different painfrom the pain that was in my
intestines when I first gotdiagnosed with ulcerative
colitis, so like the pain in mystomach was more like nerve pain
and it was like burning pain.
Colitis so like the pain in mystomach was more like nerve pain
and it was like burning pain.
And then I've also had when Ifeel like I might be having
obstruction.
It's like throbbing but alsoradiating, and that usually is
(42:01):
there for like an hour or so andgoes away unless it unless it
really is like the beginnings ofan obstruction, and then it
usually lasts.
I think the only pain that Iget that is that comes and goes
like that is gas pain.
But not everybody experiencesgas pain.
Some people just have gas andthey pass the gas and they move
(42:21):
along with their lives and Idon't understand those people at
all.
Apparently that's like the norm.
I don't get it at all, becauseand I didn't have gas pain for
the probably 20 years because Ididn't have large intestines and
just with the J pouch the gaspain is like a new thing and it
is debilitating, but it is alsosometimes it stays if I can't
(42:43):
pass the gas and I have it forhours or days and sometimes if I
can pass the gas it's just likeyou said, like an hour and then
it's gone.
So I mean I feel like I havehad the rainbow of pain
experience.
The full spectrum of painexperience with IBD and pain
medication is not somethingthat's usually prescribed.
(43:05):
To be honest with you, I meanit took it.
It's why I'm so well-versed inthe kind of pain I'm feeling,
because I had to be able to sayI'm not just coming to you
telling you that I mean it tookit.
It's why I'm so well versed inthe kind of pain I'm feeling,
because I had to be able to sayI'm not just coming to you
telling you that I have painlike this.
Specific pain that I'm talkingabout is this and it feels like
this and it's hot and it'sshooting and it's cold and it's,
you know, whatever, radiating,whatever it is, and like you
said, caitlin, when you pickedup your shirt and said this is
(43:27):
where the pain is, I was able tosay right here, this area, this
is where the pain is.
Can you do something about that?
And also in the United Statesnowadays.
I know every state is differentbut, like the state that I live
in, I would have to go to apain specialist in order to get
pain medication.
Like primary camp can'tprescribe it, my GI can't
prescribe it, my OB-GYN can'tprescribe it, my rheumatologist
(43:51):
which that is mind-boggling tome.
Kaitlyn N. (43:53):
But like I would have to go to a pain specialist.
Robin Kingham (43:56):
Yeah, it's weird, like every doctor's office has
signs in it that says we cannotprescribe pain medication.
Kaitlyn N. (44:01):
And I'm like great.
Robin Kingham (44:02):
Where do you go to get that?
Who can?
Who can prescribe that?
I mean, I know we have theopioid epidemic in the country,
but there are people wholegitimately need pain
medication.
Kaitlyn N. (44:13):
Yeah, and the saddest part is that within my
microscopic colitis Facebookgroup, not all the doctors can
agree on whether or not thecondition involves pain, and
when you're trying to tell agroup of hundreds of people that
you're bound to upset a lot ofthem, especially when you have
the daily experience.
Robin Kingham (44:31):
You're bound to upset a lot of them, especially
when you have the dailyexperience that sounds like when
doctors tell women that, oh,this isn't going to hurt when
they're doing some kind ofinternal work and they're like,
oh, you're not going to feelthis, it doesn't hurt.
Really, sir Do you have a vulvaand a vagina and a cervix.
Alicia Barron (44:45):
What kind of gaslighting is that nonsense?
Yeah, it's like.
Don't tell me what myexperience of this is, that's so
invalidating.
And yeah, I'm with you.
I would be pissed off for thosepeople.
Even if pain wasn't my symptom,I'd be like no, no people,
that's not like.
You need to listen, right.
Kaitlyn N. (45:02):
I'm currently diving into research trying to
find a connection, if there's aconnection between microscopic
colitis and Raynaud's, becauseI've also developed that within
the past year and so I'm goingto see a rheumatologist within a
couple of months about that.
Luckily, I've been a lot betterwith tests.
Now, whenever one of my doctorssays you should get tested for
this, we should do an x-ray, anultrasound blood tests, I'm like
(45:25):
go ahead, because at this pointI just want answers and I want
something that works.
Alicia Barron (45:32):
Yeah, I think there is something.
I just want answers and I wantsomething that works.
Yeah, I think there issomething.
I mean it's kind of like whenthey talk about it being strange
that sometimes when people gettheir diagnosis, they're like
kind of happy about it.
You know, sometimes having thatanswer is just the thing that
you need in that moment becauseyou like, now I can take steps,
I can, I can create an actionplan associated with this.
I don't have to just wonderwhat the heck's going on and try
and try and try and sort of,you know, just throw spaghetti
(45:52):
at the wall.
I think it's how they say.
You know, like and just like.
That can be good for a lot ofpeople to have that answer and
I'm glad that that's helping youget over some of this fear.
It's just shitty that that'sthe case.
Kaitlyn N. (46:02):
Realizing that it's not just stress Thank God,
right, oh my God but also thesymptoms are stressful.
Just the buildup of symptomscause stress as well.
Robin Kingham (46:12):
Caitlin, it has been so lovely to get to know
you better on this call.
Thank you so much for joiningus on the show, but it is
unfortunately time for me to askthe last question.
What is the one thing that youwant the IBD community to know?
Kaitlyn N. (46:24):
I'm going to answer it with two things.
If that's okay with you, Ithink, more than anything, just
don't be afraid to self-advocatefor yourself and to separate
yourself from a doctor thatyou're not seeing results with.
I think when I was younger Iwas so adamant about keeping the
same doctor and they know mebetter than anyone but if you're
(46:44):
not seeing results, don't beafraid to change.
And then the other thing isthat microscopic colitis does
happen in younger people.
It's real, it's an IBD, andwe've been fighting to get it
recognized as an IBD.
Some organizations accept itand they have it on their
website along with Crohn's andulcerative colitis, and some
(47:05):
don't yet.
So we're just pushing for thatrecognition because hopefully
that'll lead to more research,more funding and get us the
answers that we need.
Alicia Barron (47:12):
Those are both great pieces of information to
share with our community.
For sure, we a hundred percentagree with you that if you're
not satisfied with your doctor,try another.
You know there's.
This is a long-termrelationship you're going to
have with this person.
You need to be able to trustthem.
You need to feel like that you,they, are part of your team, so
agree wholeheartedly.
And yeah, it sounds like thereis definitely much, many more
answers that need to be foundfor microscopic colitis, and so
(47:34):
we share your wish for there tobe more research funding and
more awareness raised here.
And, caitlin, like Robin said,it was such a pleasure to get to
know you.
Thank you so, so much for beingon the show and sharing your
stories with us and yourexperiences, and thank you
everybody else for listening andcheers everybody.
Cheers.
If you liked this episode,please rate, review, subscribe
(47:54):
and, even better, share it withyour friends.
Cheers.
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