Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi, I'm Alicia and
I'm Robin, and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD.
Serve on the rocks this week.
My internet failed and so Robinflew solo interviewing Dr
Christina Jagielski.
Dr Jagielski is a clinicalhealth psychologist in the
(00:21):
Division of Gastroenterology andHepatology at Michigan Medicine
.
She has a particular interestin working with patients with
inflammatory bowel disease, aswell as patients with a history
of trauma and creativeindividuals.
Robin talked to her all aboutmedical trauma, medical
gaslighting and trauma-informedcare.
So just a trigger warning forfolks that we do go in depth on
(00:42):
these specific topics and so ifyou've experienced medical
trauma or gaslighting, you maywant to take care if you're
listening to this episode.
But we know you'll learn somuch and you will love hearing
from Christina just as much asRobin enjoyed talking to her.
So cheers.
Speaker 2 (01:00):
Hi everybody, welcome
to Bow Moments.
This is Robin and I am flyingsolo tonight.
Alicia was not able to join me,but that is okay, because I am
very excited about theconversation that I am about to
share with you and I am soexcited to be joined by Dr
Christina Jutkowski.
Can I call you Christina?
For the rest, absolutely,please do.
(01:21):
Thank you so much.
Welcome to the show.
I'm so excited about thisconversation.
As I've already said, my firstvery unprofessional question is
what are you drinking?
Speaker 3 (01:30):
It's a very important
question.
So tonight I'm a little sleepdeprived so I just brewed up a
fresh pot of black coffee.
So nothing too exciting, butvery much helpful.
Speaker 2 (01:42):
Yes, it is often what
I am drinking on the show and
actually you said you'velistened to several episodes so
you know that I usually havemultiple beverages.
But tonight I am also beingvery conservative and I'm just
drinking water.
I am back on that methotrexatechain, so I am staying away from
adult beverages at the time.
But welcome to the show.
(02:02):
Cheers, Cheers.
Okay.
Now my second question, alittle bit more professional.
What is your connection to theIBD community?
Speaker 3 (02:08):
Sure, so I am someone
who really became connected to
the IBD community really throughmy work as a GI psychologist.
I didn't really know anyone orhave any family members with IBD
growing up, but now I would sayabout 40% of the people that I
(02:29):
work with in my clinic have IBD,so I've gotten to know them
very well over the past sevenyears.
Speaker 2 (02:34):
And what drew you to
GI psychology so that is a
little more complex answer.
Speaker 3 (02:41):
I would say I am not
someone who started off planning
to be a psychologist.
In fact, from the age of eightI planned to be a pediatric
oncology nurse and I was a verystubborn child and you could not
even get me to consider anothercareer path from about the age
of eight until I was actually innursing school.
(03:03):
And so I, you know I continuedon that path.
I was in about the middle of mynursing training when I
realized this just really isn'tright for me.
I realized that I lovedpatients.
I've loved healthcare since Iwas a kid.
I had some health issues when Iwas a kid that required some
early surgeries andhospitalizations.
(03:24):
That's kind of what got me intohealthcare in the first place
and nursing.
But then what I realized isthat I loved being with the
patients.
I loved spending time with them.
The best rotation I did innursing school ended up being my
psychiatric nurse rotation.
Not what I expected at all.
I was so excited for oncologybut actually I never got to
oncology.
But my psychiatric nurserotation just really kind of
(03:48):
changed my life really.
I was actually doing my nursingrotation in psychiatry at a
stress care unit on 9-11.
So, yeah, so it was quite a wayto you know, and that was
really my second week, secondweek on the rotation, and so I
remember that I was.
I won't, I won't.
You remember that.
I don't want to bring up toomany memories for folks, but I
(04:09):
was sitting there about to givesomeone their medications when I
first got the news andeverything changed.
Everything changed, and so Ireally grew to respect so much
the team there, the way thatthey handled that, the way all
the TVs were turned off and theyjust really focused on
supporting each other.
And I'd like to say that I knewright then that I was going to
(04:31):
be a psychologist, but I didn't.
I was still trying to makenursing work.
I was so committed to thisdream that I had had as a kid,
ended up leaving nursing schooland transitioning into public
health, which ended up being awonderful fit.
It was again another careerthat I didn't even know existed
at the time, much like GIpsychology, and ended up
(04:53):
thriving in that.
I really love public health asa whole.
I really like the way that, youknow, public health looks at
the whole person, not just from,you know, a disease state, but
really, really looking atoccupational health, spiritual
well-being, social well-beingand all the different ways that
public health really viewshealth in a much more complex
(05:14):
manner.
And then it was through one ofmy pieces of research I was
doing there that I startedtapping into some psychology
theories related to stress andcoping and I started trying to
apply that again to oncology,because I was still very
committed to oncology at thetime.
But it was actually one of myfriends who said have you
thought about being apsychologist?
(05:35):
And it had never occurred to meand I had always been kind of
very psychologically minded.
I had been other people's kindof unofficial therapist my whole
life but never thought, youknow.
So then actually after thatconversation it just sparked
something and after that daythat was, you know, I kind of
knew that that was where I washeaded.
I still planned to maybe movein the psych oncology realm, but
(06:01):
we're finally finally gettingto GI here.
You're good.
So I first discovered that thefield of GI psychology which I
realized from listening toprevious interviews on this
podcast many others havementioned this is a relatively
new field.
So really if I had wanted to gointo GI psychology at the time
it might have been quite hard todo so.
(06:22):
But when I was applying to gradschools, this would have been
around 2012 or 2011.
One of the things you do is youneed to look for a mentor that
you can fit with, to do researchwith as part of the program.
That's kind of what helps youmatch with a program.
And I discovered the work of DrLori Kiefer, who is, you know,
(06:46):
often described as the godmotherof GI psychology, and I just I
found her work and I was justvery just riveted by the
connections between the brainand the GI tract, the type of
therapeutic support that can beincorporated, and it was one of
those things that just clickedand I realized incorporated.
And it was one of those thingsthat just clicked and I realized
(07:08):
this is what I want, didn't endup kind of going directly into
GI psychology.
I kind of I ended up doing mytraining at the University of
Alabama, at Birmingham, and Ikind of more of a broad health
psychology experience workingwith sleep, and I did some work
in palliative care.
I did do an oncology rotationfinally, and a host of you know
kind of broad health psychologyfirst, and then I finally I kept
(07:32):
asking the whole time I wasthere can I create a psychology
or GI psychology pathway, andthere was just never a way.
And so the whole time throughgrad school I just kept asking,
like how can I get to GIpsychology?
And so finally, when I wasinterviewing for psychology
internships which is the lastyear of the PhD program is you
(07:55):
do a full year rotation for fullyear internship at another site
, usually outside of the statethat you are, or at least
outside of the program that youare, or at least outside of the
program that you are in.
And so I was.
Throughout my interview process,I really wanted the experience
of creating a program.
I was really interested inprogram development and
specifically I wanted to createa GI psychology program because
(08:18):
I couldn't find one anywhereelse.
And so I ended up interviewingat University of Chicago
Medicine and they were the onlyplace where, when I asked about
program development, they gotexcited and they were like, oh,
actually we have a rotationthat's specific to that and also
we have somegastroenterologists that are
(08:40):
really excited about GIpsychology, because obviously
Northwestern is so close by andthey were very aware of that.
And so that's where I ended upgoing and so I got to get
involved with the development ofthat program there.
The first part of that wasreally the business end of
things really learning how tolike create a program and
materials and like not a lot ofexciting stuff but valuable
(09:02):
information.
And then I finally really,towards the end, got to start
working with patients themselvesand that was my first really
real opportunity to work withIBD patients, because I had
several IBD patients both inthat clinic and also in my
outpatient clinic and then Ijust loved working with them
(09:24):
ever since, and so when I cameto the University of Michigan, I
was actually their first GIpsychology fellow.
So I had the opportunity towork with Dr Megan Real and she
kind of created this program orcreated the fellowship and
joined the faculty in 2019.
Speaker 2 (09:43):
And I've been, for a
sense, First I have to say thank
you for your persistence,honestly, with it being such a
new field and so few peoplethere, as somebody who's lived
with IBD for 25 years.
We need that specialization andwithout people like you and
Megan Dr Reel, who are willingto do the work, create the
programs, advocate for thenecessity for it, it wouldn't be
(10:04):
a growing field, a field thatpeople are aware of now and
understand that it is an actualjob you can do so.
Thank you for your persistence.
I appreciate that.
There's so many questions Icould ask just based on that.
So thank you for sharingeverything with me.
And also, I'm sorry.
Oncology Too bad, so sad tooncology Everybody listening to
this story.
(10:25):
You know that you don't have toknow what you want to do when
you're 19 or 20 years old.
It is a path, it is a journeyand you will eventually end up
where you should be.
That was very inspiring to me.
Now that you are at theUniversity of Michigan, you've
done your fellowship, youaccepted a staff position.
Part of your work is research.
You did a little bit ofresearch in RFID and then with
(10:47):
other people supporting otherPIs, and now you do your own
research.
So do you mind, if we like,just dive right in, Because I'm
very excited to talk to youabout your research.
Speaker 3 (10:56):
I'm always very
excited to talk about my
research too.
I'm very passionate about it.
So, absolutely, where would youlike to start with that?
Speaker 2 (11:03):
How did you decide to
choose trauma-informed care to
research?
Speaker 3 (11:08):
Very good question,
because it was again not what I
planned.
So I yeah, this is a if there'sone, you know, one take-home
point, kind of outside of IBD, Iwould say for anybody that's
listening, is that it isabsolutely okay to change course
.
I have done it many times and Ithink listen to yourself,
listen to yourself.
If the path that you were socertain was right starts not
(11:32):
feeling right, just listen,because a lot of times that'll
guide you to something that'sreally good for you.
So, coming into the postdocs, itwas a clinical postdoc so there
wasn't a lot of expectations interms of research productivity,
but they did want me to atleast be able to have some sort
of research product to come into, and so I was really interested
(11:53):
in sleep research at the timestill am, so I still very much
love sleep-related research, andso that was what I initially
was interested in doing as partof the fellowship.
So Dr Real had really built inthis nice like three-week window
at the start of the fellowshipwhere I wasn't going to be
(12:13):
seeing patients yet and I wasgoing to have an opportunity to
kind of get to know the division, shadow you know providers
pretty much every day, get tosee them in clinic and kind of
get a better sense of thepatient experience there, and
that was really what informedthis research decision.
So as part of shadowing youknow, when I wasn't, when they
(12:38):
weren't with a patient, I wouldoften just ask questions,
questions, and one of thequestions that I asked was you
know, I'm very aware that thereis a higher prevalence of many
types of trauma in the GIpopulation.
I'm wondering how do you, as aprovider, address trauma or how
(12:58):
do you decide when to assess fortrauma?
And pretty much across theboard, the answer that I heard
pretty consistently was we don't.
And these you know and I willsay up front, these are all very
good physicians, these are allpeople that I have tremendous
respect for.
But their answer prettyconsistently across all of the
(13:19):
providers that I spoke to was wewere kind of raised or taught
coming up in medical school andour medical training that if you
don't know how to handle theinformation a patient shares
about trauma, you can makethings worse, and so it is
better to not say anything atall.
And it's not because we don'tthink it's important, it's not
(13:43):
that we don't realize that thisis an issue, but we were never
given any training on how tohandle all of this, and so we
don't want to make things worseand so I tend to, you know, not
say anything.
And so you know I sat therelistening and you know I'm also
sitting there as a fellow right,so I'm kind of like a newbie,
(14:06):
you know, very low on the totempole.
And I remember coming back andtalking to Dr Real and saying I
understand the perspectivethey're coming back with, but I
just truly do not believe that'sgood enough.
I don't believe that that isoptimal medical care.
And also those providers didn'tthink that was either to their
credit.
They also did not feel like itwas optimal, but they didn't
know what else to do.
And so that is what led me intoan interest in trauma-informed
(14:31):
care and GI in terms of wherethe research was at the time.
So we've had quite a bit ofresearch since the 90s.
Doug Drostman did some of thefirst studies on this in the 90s
, looking at prevalence oftrauma in the GI setting.
A lot of that was looking, moreso, at the role trauma can play
(14:53):
in the development of varioustypes of GI symptoms.
You, more so, saw that researchin the IBS population so that
you would see that, and so thatwas the focus then.
It was more so that, hey, we'reseeing this connection, this
might be a contributor to someGI symptoms, and that's, you
know, a very valuable part ofthe research.
(15:14):
There wasn't a lot of researchon one.
Okay, we have this information,what do we do about it?
Like, how does this changepractice?
But also the fact that anyonewho's ever been to see a
gastroenterologist, anyone who'sever had a physical exam,
rectal exam, any of the othersensitive procedures that are
(15:36):
done in GI, can know that evenyou know, even if you didn't
have a prior history of trauma,coming into this setting, if not
handled properly, could betraumatic or just, at the very
least, very stressful andanxiety provoking.
And so that kind of you knowreally got me interested in
understanding how can we betterlook at trauma?
(16:00):
What can we do to help makethis setting safer?
How can we help to equipproviders with what they need so
that they do feel comfortablehaving important conversations?
And then that, also, along thesame time that I was looking at
starting to get an interest inthis area, dr Tiffany Taft and
colleagues in Chicago had alsostarted looking at rates of
(16:23):
medical trauma in the IBDpopulation as well, and finding
that there was really high ratesof post-traumatic stress for
patients with Crohn's andulcerative colitis.
And so, long story short, sheand I, along with Dr Allie Fuss,
are now part of a research teamthat are all kind of looking at
this together.
Speaker 2 (16:42):
Nice, I like that.
First, I want to just highlightsomething that you said about
the physicians that you talkedto didn't feel equipped to
support their patients throughtrauma, and it's not that they
didn't want to.
So everybody who's listeningmaybe there are 25 of you now
who are listening just thinkabout that when you're talking
to your doctor, even 25 years in, I still have to.
(17:03):
I would say not my currentphysician, but sometimes if I'm
seeing with a PA or the NP orpast doctors, I've had to kind
of coach them through that alittle bit, which it shouldn't
be our job as a patient.
But they only know what theyknow and they do.
They become physicians becausethey want to help us.
So thank you for highlightingthat you did have those
conversations and they did sharethat with you.
That it's not for lack ofwanting to support, but also
(17:25):
they just didn't want to make itworse.
Yeah, absolutely.
In the research that you'redoing.
You said that like it's a highprevalence of trauma in IBD, but
as it pertains totrauma-informed care, what are
you finding?
This is probably I don't know.
I'm probably asking twocompletely different questions
and trying to smash themtogether, but what are you
(17:45):
finding, if you can share that?
And then how do you see that?
Informing clinical care.
Speaker 3 (17:51):
So it can probably
come at this a couple of
different ways.
So so there really is not a lotof research in trauma-informed
care practices in GI, so themajority of it was really
looking at prevalence and alsosome general recommendations,
but not a lot of research onwhat is actually being done.
That is starting to changereally over the past couple of
(18:12):
years.
We're starting to see someadditional and there's some
other actually GI psychologiststhat are also interested in this
as well, so we are starting tosee a few more studies come out
since about 2023.
One of the kind of firstquestions is looking
specifically at screeningpractices.
So do providers ask abouthistory of trauma?
(18:33):
If so, to whom do they ask?
Are they asking everyone?
Are they asking specific people?
So this is part of myfellowship research that I did.
So we did a survey it was justan internal survey of our
physicians in the division andwe asked about you know, how
(18:55):
often do you screen patientswith history of trauma?
How often do you screen beforecolonoscopy?
Who do you screen patients withhistory of trauma?
How often do you screen beforecolonoscopy?
Who do you screen?
What are the factors that youconsider before screening?
Just to get a general sense ofyou know, if you do not, if you
choose not to screen, what arethe reasons for that, what are
the barriers to doing so?
And so what we found is thataround 50% of providers said
(19:23):
that they did screenconsistently or, trying to
remember the exact wording, itwas kind of frequently,
frequently screened for trauma,and I cannot remember the
percentage that screened beforecolonoscopy, but it was
somewhere around 50%.
So 50% who do?
50% who do not?
(19:44):
The providers this will not bea surprise probably to anyone,
but the providers that were morelikely to screen were female.
So female providers do tend tofeel a little bit more
comfortable in that area that,or perhaps just have a higher
kind of, maybe, awareness of theneed to do so.
We also in terms of who theywere screening.
(20:06):
This is also consistent withthe other literature as well.
So more likely to screen infemales, more likely to screen
for patients with particulardiagnoses like IBS, and then
there were certain factors likeif the patient had a history of
anxiety or if they observedparticular behaviors, like if
the patient appeared anxious andthings like that, and so one of
(20:29):
the things that I took awayfrom that was one.
So we, you know, think 50% isstill more than what we thought.
So you know that's promisingthat at least 50% of providers
were considering screening, butalso that there is a significant
risk when we approach somethinglike trauma screening with only
(20:51):
certain kinds of people in mind.
So when we come in with thatbias of trauma is more likely to
happen to females.
Some types, some types oftrauma are more likely or more
common in females.
That doesn't mean that thepeople of other genders are not
experiencing those types oftrauma.
Or how someone presents, do theyseem anxious One.
(21:14):
I would not want someone toautomatically assume or view
someone through the assumptionthat this person has experienced
trauma.
I wouldn't want someone just toautomatically make that
assumption.
There's plenty of other reasonsthat person might be feeling
nervous in your clinic.
But again, trauma is a possibleexplanation for why that person
might feel anxious.
(21:55):
But I think, even moreimportantly, you can be a stoic
male that is seems like you know, seems very put together and
doesn't really seem to emote any, isn't really emoting anything
in particular, and have had areally difficult past or had a
difficult medical traumasituation.
And so how people presentexternally does not define what
their history has been like.
And so one of the movements nowand I'm really pleased to see
that other people are startingto talk about this as well is
that we really want to movetoward this idea of trauma
informed care for all people,regardless of how they present
(22:17):
and also regardless of whetheror not they do have a prior
trauma history.
Because, regardless, if you'recoming into this setting and
we're going to be doing examsand you know, poking and
prodding and doing variousthings that can be anxiety
provoking if we can build asystem that is supportive, you
(22:37):
know, of both people with ahistory of trauma and also
people at risk, we can reallyjust provide better care.
It really just comes down totrauma-informed care is better
care for everyone.
So that's kind of where I seethis headed.
Speaker 2 (22:50):
I love that.
I will have to say that I usedark humor in those kinds of
situations and also I have to bereally careful of when someone
is trying to approach it fromthat perspective, me not getting
jaded, like going like okay,here we go.
You know, and actually doingthis show has helped me to say
like I say this on the show allthe time I have to be better
(23:13):
myself as a patient.
To not be so jaded is the onlyword that comes to mind, because
when someone is asking mequestions, in a way I'm I feel
like nobody on the show get madat me.
I feel like it's almostpatronizing, and so I I have to
like give myself a little peptalk in the process of answering
their questions.
Like they are trying toapproach me in a way that is,
(23:34):
you know, trauma informed, sothat they are asking me these
questions and and I just Ianswer the.
I have to like just you know,trauma informed, so that they
are asking me these questionsand and I just I answer the.
I have to like just, you know,check myself before I wreck
myself so I can answer thosequestions honestly.
And it's because of the show,because I'm like what would I
tell somebody on the show howwould I expect them to behave,
how would I want them to behave,in order to get the best care
possible?
So I have to do that for myselftoo.
That is tough.
(23:55):
As a patient who hasexperienced trauma, it's really
tough to not be like oh thisjoker, do you mind if I ask?
Speaker 3 (24:00):
you a question?
No, go ahead, no, go ahead.
Do you feel that way?
More so, if the person seemsuncomfortable with asking the
question, does that impact orthat's a good question.
Speaker 2 (24:14):
I'm being interviewed
on my own show.
Everyone that is a goodquestion.
So one particular situationcomes to mind Everybody I
promise I'm not going to turnthis into a personal therapy
session I had to go to the ERafter a scope this was November
of I guess it was 2023 now andthey nicked a blood vessel in
the scope.
So afterwards I ended upbleeding a lot and I was home
(24:37):
alone for a week it happened tobe a holiday week and I had to
literally give myself a pep talkto go into the emergency room
because I was like, okay, okay,robin, this is a lot of blood
now, like this is not just, youknow, a little bit of blood,
this is not just my J pouchblood.
Amber Treska, who's been on theshow, told me at one point that
zero blood is the normal amountof blood and I said I don't
agree blood.
(24:59):
And I said I don't agree, butanyway.
So I mean it was just a lot.
I literally had to tell myselfit's okay to go to the emergency
room and like, if you don't goto the emergency room now, you
might pass out in your house andthen not nobody's here to help
you get there.
So I drive three hours to theemergency room where my doctor
is, and in that situation, like,I stopped eating food.
I really stopped drinkingbecause I was like they're going
to have to scope me again, soI'm just going to be prepared
(25:19):
for that.
And in the course of that Istopped bleeding.
And so when I got to theemergency room, like when I
first got there, I passed bloodinitially, but then, once I
finally got back to a room andpeople were seeing me and
talking to me, there was noevidence of me having so much
blood.
And so when I got to the pointwhere the hospitalist, the
emergency room doctor, came toask me questions, the kinds of
(25:42):
questions he was asking was likeso you said there was blood,
was it like a lot of blood orwas it like a little bit of
blood on the toilet paper?
And so I was like, okay, my guy, I have had Crohn's disease for
25 years.
I know the difference between alittle bit of blood and a lot
of blood.
So I had to like, bring myselfback and say he doesn't know
that.
And so the way that I respondedto him, after I gave myself a
(26:05):
little check, was like, you know, I thought it might be
hemorrhoid blood at first too.
But I can see how you would askme if there's a little bit of
blood on the toilet paper andthat could be scary for a lot of
people.
But I have lived with IBD for25 years and so there's a
difference between a little bitof blood on the toilet paper and
, you know, a lot of blood inthe toilet, like passing only
blood.
And he's like, oh, yes, ok, yes, yes, yes.
(26:25):
So I had to like take a stepback and say he's not asking
this to be condescending, likehe's genuine, he doesn't know my
history and so when you haveexperienced trauma, that part is
hard like retelling your storyover and, over and over again.
And actually, in that emergencyroom visit that's the first time
I had to go to the emergencyroom in a long time I had two
(26:48):
panic attacks, sharing my storywith two different doctors.
And so the first doctor camedown and I started sharing my
story and then I started mychest is getting a little tight
right now.
My chest started getting tight,tears started, and I was like,
okay, you're going to have togive me a second because I'm
having a trauma response.
And then, about an hour later,a hospitalist came in and so I
had to go through the wholething again and I thought, okay,
I'm going to be fine, I'm goingto be able to get through this
one, because I just did it and Idid the exact same thing.
I was like, okay, you're goingto have to give me a second
(27:09):
because I'm having all right,okay, this is a little bit too
much in a 24-hour period.
So I really do have to thinkabout being able to respond in a
way that's not snarky, right?
Because they're just doingtheir job, they're trying to
find out what's going on, andthey were being very thoughtful
(27:35):
and considerate and asking thosequestions and I had to keep
myself from getting defensive.
It's hard, when you'veexperienced trauma to not go
right there, and so I cancompletely see how physicians
don't want to make that worse.
We have to work hand in handand I hate to say that it's the
patient's responsibility becausewe didn't ask for this right.
We've already been through somuch, but it is a little bit,
especially somebody who's beenliving with it for a long time
(27:56):
and really understands that andhas had to navigate it Like I
feel like I would be doingpatients coming after me a
disservice if I didn't take thetime to be thoughtful in my
responses and potentially helpthem, help somebody through
trauma.
Speaker 3 (28:10):
Thank you, I realize
you didn't expect therapy today,
but I appreciate yourwillingness to share that with
me.
I hear you in that you aretrying to be mindful.
You know in that position torealize wait a minute, like this
person doesn't know me and isasking you know this is coming
from a good place or is justtrying to get to better
(28:30):
understand my situation.
I do think it is valuable forproviders to keep in mind that
this is not your first timeanswering that question, and
especially in academic medicalcenters and teaching hospitals,
where students come in andresidents come in right, and a
lot of times people want to takea history that we can really
(28:51):
think we can be a little morethoughtful about who asks what
questions, who communicates whatto the rest of the team, so
that we're not making peoplerehash really painful details
again and again just because newperson hasn't heard.
That and I think that's part oftrauma-informed care is really
thinking about not just whatquestions to ask, but who asks
(29:14):
this, when and how do we prevent?
You know, in the midst of acolonoscopy, we don't need the
check-in person asking about it,the tech, the nurse and the
gastroenterologist all askingthese questions we really need
Don't forget theanesthesiologist.
So, and this is where theresearch comes in, you know, I
(29:34):
think when you started sharingyour experience, one of the
things I was thinking about isone of the research that my
research team is about to startdoing is really doing some
qualitative interviews withpatients, asking about their
thoughts on various types oftrauma, informed care strategies
.
Do they, you know, how do theyfeel about screening, if they
(29:56):
feel that because there's been,there have been, there's been a
couple of studies, in fact, I'mthinking of one that was from
about 10 years ago, where theyasked people who had experienced
sexual abuse and wereundergoing colonoscopy and there
was a question about do youthink your gastroenterologist
should ask about history ofsexual abuse?
(30:16):
And again, about 50% said yes,they should, and about 50% said
no.
We don't have any informationabout why the people said no,
and so that's part of what we'retrying to gather through this
research.
Is you know, is that becauseyou've been asked before and it
didn't go well?
Is it because the person didn'tknow how to respond to that?
(30:37):
Is it because you don'tunderstand why someone would
even bring this up?
You know?
Speaker 2 (30:41):
Yeah, exactly yes,
I'm having a colonoscopy.
How is that pertinent to thissituation?
Speaker 3 (30:46):
Yeah, and also, I
think, really valuable questions
about who should be asking this.
How do we both gather theinformation to help someone feel
safe to, you know, if somebodycomes in and knows, you know,
the last time I had a procedureof some kind, you know, maybe
the anesthesia, you know, wasn'tadequate or something didn't go
(31:08):
well, and so I am now cominginto this procedure, already
apprehensive, already thoughtabout canceling, thought about
canceling multiple times becauseI just maybe, I'd rather just
not.
You know, I'll just postponethat test till next year, right?
So there's value in a providerunderstanding that patient's
experience and knowing this isreally hard for me.
(31:30):
There have been some things inthe past that have made it, you
know, made this a very unsafefeeling place, or a place maybe
where I didn't feel heard orunderstood, maybe a place where
my symptoms were originallyascribed to stress, which I see
a lot.
I see a lot in my patients.
So there's reasons, there'sreasons why I've been
(31:53):
rescheduling my appointment orthere's reasons why I am, you
know, clenching my fist waitingin the waiting room, because it
creates an opportunity for aprovider to say one thank you
for sharing that and let's worktogether to figure out how we
can help this experience be morecomfortable, for you to feel
(32:15):
safe.
Maybe you have ideas.
Maybe you have ideas about whatwould help you.
Can we collaborate on this tohelp this?
Maybe it won't be, depending onwhat we're doing.
Maybe it won't be like a superpleasant experience in terms of
physical comfort, but can wehelp to at least create a space
where you know that the peoplewho are here are really
(32:38):
motivated to take the very bestcare of you and that we're going
to be looking out for anythingthat you know we're going to be
keeping an eye out for.
You know, if you seem to befeeling distressed or if we're
seeing signs of pain, we'regoing to respond to that.
We're not going to let you justkeep going through this
procedure and ignore those signsand symptoms, so that type of
thing.
I think this is wheretrauma-informed care and GI
(33:01):
could head.
But I fully acknowledge there'sa lot to learn and your
conversation about having torepeat your story so many times
is a perfect example of that.
Speaker 2 (33:12):
Telling your story
multiple times in a short amount
of time.
That's not ideal, that's notideal.
I'm going to switch gears alittle bit, because we got deep
there.
What are you most excited aboutlooking into now?
Because you did say that you'regoing to start researching
something.
So what are you most excitedabout that and where it can take
us?
Speaker 3 (33:32):
There's a couple of
things.
So I'm really excited aboutthis upcoming project where, you
know, getting ready to startrecruiting, and I'm just really
excited to really talk to peopleand really hear what people
really think, because I thinkfor the longest time we just
haven't been able to answer thequestion what do patients want?
We've had a few kind ofsurvey-based questions where
(33:55):
we've been able to get that.
So I'm really excited to reallyfind out what do patients want,
what ideas do they have?
You know, that's why we part ofwhy we want to do a qualitative
approach here is to just kindof come in and just leave that
as open as possible so we cansee what happens.
And then I also think there areopportunities in the future to
help a training providers likeI'm really interested in
(34:15):
potentially the developing atraining program for people who
are really interested in gettingbetter at this, at practicing.
I'm really hoping that this canlead to not just information
that people can read about, butactually doing some work where
they can get a chance to work uptheir nerves, because I think
it's so important.
You know, we as patients come inwith our own anxieties.
(34:35):
I don't have GI specific, youknow, medical trauma, but I have
had some really bad medicalexperiences in the medical
setting.
I'm very aware of how that cango.
But our providers are coming inwith a lot of nerves and
insecurity and doubts themselves, and so one of my hopes is that
we can help them to get achance to work out those nerves,
(34:55):
ask their questions andpractice so that when they are
going in to talk with patientsthat they've had a chance to
kind of really strengthen thoseskills a bit as well.
I think first we want to knowwhat the patients really want
and that we can help theproviders learn how to do that.
Speaker 2 (35:11):
And then you're going
to get every single person is
going to give you a differentanswer about what they want.
Speaker 3 (35:15):
Very true, it is very
true.
Speaker 2 (35:18):
Right, we have to
find those common themes, right?
I am curious about like I didtherapy because of medical
trauma, like I never thoughtthat I was somebody that was
going to have to have therapy.
I am a very self-aware personand I, if I thought that
something was wrong with me, Iwould read a book about it and
then, you know, do those thingsthat were in the book and like
(35:40):
very much when it came to thatkind of stuff not self
diagnosing, but, okay, recognizea problem, get the information,
make changes based on that andmove on with my happy little
life.
But after my J pouch surgery inDecember of 2020, I really
experienced a lot of trauma froma specific provider and I ended
up changing providers mid Jpouch surgery and I ended up
(36:05):
like going back to the originalprovider's office and sharing
with them why I was changingproviders.
It did everyone did zero good,but I went into intense therapy.
I even did EMDR because, like,this is a reoccurring thing,
right?
You can't just go to therapyand you're cured of that thing
and then you never have to do itagain.
When we have a chronic illness,when we have IBD, it's constant.
(36:26):
There's the potential forre-traumatization, right?
Just, over and, over and overagain, and so very recently I
had a conversation with not myspecific doctor but another
provider, and after thatconversation he texted Alicia
and I was like I think I'm goingto have to start therapy again.
Like I'm not feeling very good,like I think that I'm going to
need a referral to anotherpractice because not my doctor,
(36:49):
but somebody in their office andI know that my doctor sometimes
listens to this.
So please forgive me, I'm stillwith you.
Thank you for the way that youhandled it, you know.
So it was like just one littlething that happened in a virtual
visit and I was like I, I'm notgoing through this again.
Like I'm, I'm not going throughit again.
So, and maybe you don't have ananswer to this but what is the
thing that we can do as patientsif we're not in therapy?
(37:11):
To kind of and I hate this wordbecause it puts the onus on us,
it's like something's wrongwith us but to build resiliency,
so like, help us to be able tosay like, okay, I'm in a
situation that is probably notgood for what I'm experiencing.
How can I respond to the doctor?
How can I fortify myself sothat I'm not having this like
(37:31):
traumatic reliving of it.
How do we build up thatresiliency, I guess, is the
basic, what it comes down to.
Speaker 3 (37:40):
How do we build that
up so that you can continue to
get the medical care that youneed and not, you know, have to
avoid that?
Am I hearing that?
Speaker 2 (37:46):
Yes.
Speaker 3 (37:47):
Thinking about this
in a couple of ways.
So I might answer this in acouple of different ways.
So one if you are experiencingpost-traumatic stress whether
it's full-blown criteria to meet, you know a diagnosis of PTSD
or just you know ongoingpost-traumatic symptoms,
flashbacks.
You know increased arousal incertain environments, desire to
(38:08):
kind of avoid medical settingsor those triggering environments
or anything that just remindsyou of someone or something or
someplace In those environments.
You know if we're not alreadyworking with a trauma-focused
specialist, I'll say not just intherapy, but working with
somebody who specificallyfocuses on trauma.
This is your invitation that itcan really help.
(38:29):
It can really help.
I'm not saying that everybodywho has experienced something
that they consider to betraumatic necessarily needs to
do EMDR or to do, you know, afull course of trauma-focused
treatment.
But if you are finding that youare dealing with those symptoms
on a pretty regular basis,please do consider it.
(38:49):
I absolutely understand whypeople avoid it, because it
means approaching the thing thatwe've been wanting to avoid,
and so really the hardest partof it often is showing up and
following through with that.
But it really can help and youdon't have to live with the
symptoms of PTSD for the rest ofyour life.
(39:10):
It really is treatable.
I really appreciate that youbrought up the fact that one of
the things that makes medicaltrauma in particular so
challenging is that it's reallyhard to not put yourself in a
position that's similar to theone that caused the traumatic
experience in the first time.
(39:31):
If you want to get medical care,there are times where you are
having to put yourself back inthat situation and that is, for
lack of better term, you know,just unfair.
It's unfair and also I want, Iwant everybody to be able to get
the care they need as well.
I think a couple things canhelp, just from, like, a
non-post-traumatic stressperspective.
(39:52):
So if you know that there arecertain aspects of the medical
environment, know that there arecertain aspects of the medical
environment, certain aspects ofexams or conversations or
waiting rooms, or if you knowwhat it is that for you seems to
get you every time, or almostevery time, a conversation with
your provider or somebody in theteam it doesn't have to
(40:14):
necessarily be thegastroenterologist, maybe it's
your favorite nurse, maybe it'ssomebody else there that you
really trust Having aconversation to say I just, you
know, I wanted to let you knowthis.
Something about this makes mereally nervous every time.
And I'm wondering if there'sanything you could be done to
help address that.
You know, just pointing it outto somebody.
I know that's hard, I knowthat's really hard to bring that
(40:35):
up, but rather than trying tojust cope with it every time, if
we can address it, maybe we canhelp you have a different
experience.
I think that's my goal is to,because if people can have a
different experience in themedical setting, one of the
things that can do from a traumaperspective is it lets the
brain know that, while, yes,that bad experience or that
(40:58):
multiple bad experiences becausewe know a lot of times trauma
happens more than once yes, thathappened, that is real, that
was a part of our history.
It is a part of our history.
But I have had other situationsthat went better.
I have had providers thatlistened, who believed me, who
didn't question me on that, whoadvocated for me, and that can
(41:19):
help the brain understand thatthere is more to this world than
that experience that I had, ormultiple experience, and that
can be really helpful in findingthat place of safety.
Does that make sense?
Speaker 2 (41:34):
No, it makes perfect
sense and I love the way that
you put it, because how is ourprovider to know that we are
experiencing that if we areunable to share it?
It's just like sharing yoursymptoms.
It's just like answeringquestions Honestly when you go
in the office.
It's why we say you know, bringsomebody with you If you think
you're not going to remembereverything.
Bring a notebook, write downquestions in advance so you
(41:56):
don't forget, because we are allhuman.
A notebook, write downquestions in advance so you
don't forget, because we are allhuman, they are human and I
spoil your alert for everybody.
They can't read your mind.
So the physicians, our GI,psychologists no one can read
your mind.
So the onus is on us toactually share that.
We are feeling uncomfortable,or we are starting to have that
anxiety, or for me, everything'sin my body.
(42:17):
My chest is getting tight,tears are rolling down my face,
like it.
It is my responsibility toshare that, otherwise they have
no idea what I'm experiencing ifI'm not vocalizing it.
Speaker 3 (42:26):
And you, and sharing
that you are uncomfortable
doesn't mean you have to retellyour trauma story, right?
You?
You can just express hey, Ijust wanted to let you know I
feel really nervous whenever Icome in here.
There's lots of ways we can saythat right, if you're worried
about offending your doctor, youcan say it's not you, it's
based on previous experiencesI've had, and they can actually
(42:46):
take the lead then and say, oh,like, let's talk about that,
right, this actually gives theprovider an opportunity to
really connect with you and bethere with you.
I also really realized that inany situation that makes us feel
really anxious, it is reallyhard to speak up right.
A lot of times what we do whenwe're very anxious is we shut
down.
And so I just want toacknowledge to anyone listening
(43:06):
that I know we're saying youknow, providers can't read your
mind and it can be reallyhelpful to share.
And I also just want toacknowledge I totally get it if
you want to do that.
But in the moment you shut down, maybe after having that
realization, we might go homeand talk to a loved one and say,
hey, next time will you comewith me?
Can you help address, like,what's happening in the room,
(43:28):
like there are some ways that wecan, we can work with that, to
help with that.
But yeah, I think if you arefinding that you know, a lot of
times providers send informationresults through the portal and
I have experienced numerouspeople who have said I'm
terrified, terrified to readthat and so I just avoid it, and
so sometimes people don't getinformation.
A lot of times that informationsays everything's fine.
(43:49):
But if you know that that is atrigger for you, if you know
that that just causes so muchanxiety that it's essentially
not an effective form ofcommunication for you, then
maybe have a conversation withyour team and say could somebody
call me or is there?
You know, come up with a plan sothat you can get the
information that you need right.
(44:10):
So sometimes, just bringingthis up, we can come up with
constructive solutions to eitherrevise how we do things or come
up with a coping plan, atrauma-informed plan.
So we're aware that, hey, maybeI know that I tend to
dissociate when there's pain orif there's touch or if there's a
(44:32):
smell or there's some, whateverthe trick, it could be numerous
things.
If I know that that's what Itend to do and a lot of times
people do know that sometimespeople aren't aware of what
dissociation is.
But if they know that, that'swhat I tend to do, and a lot of
times people do know thatSometimes people aren't aware of
what dissociation is.
But, you know, if they knowthat there's something they tend
to do in certain moments andI'm going to put the onus back
on the doctor and just admit it.
Speaker 2 (44:48):
but while we're
talking about this from a
patient perspective, then we cantalk about that.
Speaker 3 (44:52):
We can talk about
that and you know, I will do
this with my patients when theyacknowledge there's certain
things that happen, because wecan come up with a plan together
for what they can do, and then,with that person's permission,
I can reach out to the doctorand communicate that and say,
hey, we came up with this ideafor this next procedure.
You know, would you be open tothis?
(45:13):
And we can actually worktogether to come up with a
system to say, hey, I tend tosay yes, or say I'm okay, or say
I'm fine when I'm not fine, andso that's because I'm just
trying to kind of check out andI just want to get through this
and pretend like it's nothappening.
But that also means I'm notspeaking up if I need to stop or
if I'm in pain, and so that'sprobably not the most effective
(45:36):
or helpful thing for me, butit's what I do, it's what I know
, and so we can work together tocome up with strategies, maybe
a nonverbal, maybe a hey, I'mgoing to raise my finger if I'm
feeling in pain, or somethinglike that.
So there's lots of differentways that we can work together
as a team.
So again, if a person feelscomfortable bringing that up to
the doctor, that can be hugelyhelpful.
(45:57):
I'm also going to say from aprovider perspective, this is
where developing your owncommunication approach long
before we get into actuallydoing sensitive procedures or
any of those things that can betriggering, having a
communication approach to justaddress, you know, is there
anything about prior experienceswith IBD that has caused a lot
(46:21):
of anxiety, or is there anythingthat you really struggle with
as part of this?
Is there anything I should knowabout that?
I really encourage providers tobe proactive in opening up that
door because I think that makesit a lot easier from the
patient perspective to thenanswer that question if they
know the provider wants to know.
Speaker 2 (46:40):
Yes, and I would say
that I know I'm only one person,
but we've talked to a lot ofpatients, and I've talked to a
lot of patients over the years.
Just knowing that they'rewilling to listen to something
like that, even if they don'tknow what to do we don't expect
them to know what to do in everysituation so just knowing that
they're open to that, havingthat conversation, makes you
feel more comfortable and safe,which is really what it's about,
(47:02):
right?
You're feeling unsafe, feelingmore comfortable and safe in
their care.
One thing that I've said on theshow more than one time is that
and you've said it multipletimes with it's a medical team.
When you have IBD, it is a team.
There is a team approach.
You have so many differenttypes of providers and you are
the captain of that team as thepatient, and so if you don't
direct your team, I don't wantto put the I hate putting the
(47:25):
onus on us back on patients, butwe do have to captain that team
if we're going to get the bestcare that we possibly can.
And I also want to recognizethat not everybody has access to
these institutions that doresearch and the IBD centers of
excellence, and not everyone hasaccess to therapy or like if
they're employed, they'reprovided as an employee
insurance for that.
(47:45):
So I do recognize that noteverybody has access to that
team approach.
But if you can get it, takeadvantage of it and if your
employer has an, is it AEP, eap.
Speaker 3 (47:57):
EAP.
Thank you, An.
Speaker 2 (47:58):
EAP plan.
A lot of times that will havelike five or six free visits
with a therapist.
So if your insurance doesn'tcover therapy but your employer
does have an EAP plan, youshould look into that and see if
they do provide free visits,because that is such a wonderful
way to get started, or at leastto give you the tools and
(48:19):
tricks that you need initiallyto be able to build your
resiliency and feel safer insomeone else's care.
Speaker 3 (48:26):
Absolutely.
Speaker 2 (48:26):
Unfortunately, it's
time for me to ask you the last
question, and I have loved thisconversation so so much, even
though my chest is good tightand I'm like I cried at one
point.
Thank you so much for coming onthe show.
But to wrap things up, what isthe one thing that you want the
IBD community to know?
Speaker 3 (48:44):
First I want to say I
want to say thank you to you
for being so open, and I thinkthat that will be really helpful
to so many people and also it'sbeen really informative for me.
You've really got me thinkingabout some things that were not
right at the top there, and so Ireally appreciate it some
things that were not right atthe top there, and so I really
appreciate it.
I really do so in terms of whatI think providers really need
to know.
I'm just going to reiteratewhat I said earlier.
(49:06):
You know, I realized that whenyou know someone comes in for a
new patient appointment, there'sso much to learn, there's so
much to know about this personand you know.
A huge part of that is you know, looking through records and
getting a sense of you know.
A huge part of that is you know, looking through records and
getting a sense of you know allthe things on paper that we can,
labs and all of this.
My biggest recommendation forproviders that are working with
(49:28):
patients with IBD whether you'rean IBD specialist or whether
you're a primary care doctor orwhether you're a general GI is
to keep in mind that peopleliving with IBD are so much more
than their labs, their testresults, how those biomarkers
are looking, that everybody'sreally coming in with prior
(49:49):
experiences that really shapetheir interaction with you and
the medical system.
Not everybody has necessarilyhad adverse events that are
coming in, but you know,especially if you're not the
first provider they've seen,they probably have some things
to share with you.
And so I really encourage beingproactive in getting to know the
(50:11):
patient's experience and notjust the dates, dates of when
they were diagnosed, what thesymptoms were, but really
approach them to get to knowthem as a person and understand
the experiences they arebringing in with them.
We don't have to directly asknecessarily, especially in that
first appointment do you have ahistory of trauma?
(50:32):
I think, especially when you'regetting to know someone that
can be kind of a toughconversation to lead with, to
know someone that can be kind ofa tough conversation to lead
with, but we could open up thedialogue to say is there
anything about your priorexperience to getting to here
that I should know, any kind ofdifficult experiences or
anything that have made thisjourney harder for you?
Because I'd really like tounderstand that and maybe we can
(50:56):
figure out how to make this abetter experience going forward.
Maybe you know that person willsay, no, everything's been
really smooth and easy.
But just like you were sayingearlier, I think just the
willingness to listen, just thefact that you're conveying, I
care and I really want tounderstand what you're bringing
in, what your experiences havebeen, can really help that
(51:18):
relationship start off on theright foot and really help you
kind of identify some ways tohelp create safety from the
get-go.
Speaker 2 (51:26):
Amen to that and, on
that note, thank you everybody
for listening.
Thank you again so much,christina, for joining us and
cheers everybody.
Thank you.
Speaker 1 (51:35):
If you liked this
episode, please rate, review,
subscribe and, even better,share it with your friends.
Cheers.