I would say IBD has definitely made me a more
strong, resilient person, and it's helped me
have more empathy for others. I have learned
that I can do hard things. I tell myself that
all the time. That's kind of my mantra. If I
tell myself I can do hard things and then I do
whatever it is I need to get done, it gives me
more of a sense of accomplishment. So that has
been very helpful for me. But it has helped me
learn how to advocate for myself and advocate
for others as well. This is Kinsey, who got diagnosed
with ulcerative colitis at age 15 in Saratoga
Springs, Utah. It took a little over a year for
Kinsey to get clarity about the war that was
raging inside her gut. And just a few years later,
she lost her colon to surgery. Today, she tells
us all about her IBD journey, from living with
a J -pouch, to using sarcasm as a means to raise
awareness. This is Talking S***, presented by
Colitis Unfiltered. My name is Frank Tabering,
and Kinsey, welcome to the show. Thank you for
having me. Well, it's a pleasure to talk to you
today. And what I usually like to do is start
off by setting the context of your IBD journey.
So in a few sentences, if you don't mind just
telling us... where you got diagnosed, when you
got diagnosed, and also how your IBD journey
involved until today. Yeah, of course. So when
I was 14, my mom did a big move. So we moved
about an hour away from where I had grown up
for most of my life. And around that same time,
I started experiencing like stomach pain, fatigue,
weight loss, bloody stool, that kind of stuff.
And I have always been an anxious kid, so they
kind of assumed it was anxiety. So between when
I first started having symptoms to my actual
diagnosis was about a year. When I was 15 years
old, they did a colonoscopy, and they saw the
colitis, and that is when I got diagnosed. And
so when you saw a doctor for the first time,
did they not inquire any further? They said like
they just said it was anxiety and nobody was
sort of like interested in figuring out exactly
why you had, let's say, you know, the diarrhea
and the typical symptoms of colitis. Yeah. So
I saw like a primary care pediatrician and they
saw with my history of anxiety and with the big
life changes, they assumed it was that. And the
actual bloody stool didn't start happening towards
the end of that year mark. And so when you got
diagnosed with colitis, had you ever heard of
the term before? Was it completely new? Did your
doctor explain what it was and what went through
your mind at that stage? So I have a family history.
My aunt had ulcerative colitis and then my dad
has at least two cousins with Crohn's that he
knows of. So I did have a pretty good understanding
of what it was. My aunt actually, when I first
started getting sick, she was like, I think it
might be colitis, but it did take a while to
get the diagnosis. And then I remember, I think
my doctor gave me like a pamphlet or something
of like, this is what it is. I don't remember
that much of him like actually explaining what
it is, but I also was still like coming out of
anesthesia. So I'm not sure. And so having a
family history of IBD, did it scare you? to be
diagnosed with colitis as well? Or did you feel
like you were potentially better prepared for
life with the disease? I did feel a little scared
to be diagnosed with it because I had a very
basic oh I think it's where people just use the
bathroom a lot I didn't really understand what
all it entailed I remember that like my parents
and my aunt were actually more upset about it
than I was and I think that's just because they
kind of knew more about what it was once I figured
out what it was I definitely had like a morning
period where I was a little bit like bummed about
it And so from the moment that you were diagnosed
to today, how did your journey with colitis evolve?
Take us a little bit about what happened, you
know, since diagnosis to today. Yeah, so they
pretty quickly started me on Remicator and Fleximab.
And I was on that for about a year and a half.
And then I started having like breakthrough flare
-ups and the efficacy of the drug started working
less and less. And towards the end of the Remicade,
I ended up getting admitted for a couple of days
for a flare up. And they did a scope and they
saw that I had a lot of active disease. So they
decided it wasn't working anymore. And so at
that point, they decided to switch me to Stelara.
So I was on Stelara for a little bit, and then
after the Stelara, I went through a phase where
I would try medication for a couple of months,
and then it would stop working. So I was on Stelara,
and then I was on Intivio, and then I did Renvoque,
and then I did Valsipedi, and by then I had already
filled like five or six drugs within three years.
And I still had active inflammation even being
on prednisone and biologics. So they decided
that it was time to do a total colectomy and
get a J -pouch. So I had that done in August
of last year, which was originally the three
-part surgery, which was supposed to take place
over the course of about nine months. But due
to being on long -term prednisone, I didn't heal
well from the surgeries. I had all three parts
of my surgery in three months. And then I had
two additional surgeries where I got a JP drain
placed and that got infected. So then I got a
wound vac placed. And then it took me a while
to kind of heal from that. And then now I am
on Zeldjantz to treat. I have cuffitis, so I'm
trying to treat that. But I haven't had any major
surgeries for a while. That's kind of where I'm
at now. Right. Yeah, that's quite the journey.
And so when you had the surgery, you were how
old? 18. 18. So between diagnosis and surgery,
basically three years elapsed, right? Yeah. Tell
me a little bit about living with colitis for
three years, especially during an age that is
kind of crucial, right? I mean, you were young.
And as young people during those teenage years,
we're used to doing different things than suffering
typically, right? So I'm interested to hear how
you navigated that, especially also being around
other kids that most likely didn't really understand
what you're going through, right? Yeah. So that
was basically throughout high school, that time
frame. I would have good times and bad times,
like times where my medication had it somewhat
controlled. fully gotten to remission but and
then I'd have like flare times I did have a 504
plan in place that helps teachers and staff kind
of understand what was going on and I'm a pretty
open book so all my close friends did know about
my disease and they were also pretty understanding
they didn't like understand in depth what the
disease was, but they did understand that I might
be a little bit more tired than other teenagers
my age. I may need to stay close to a bathroom,
that kind of stuff. So I think I had a pretty
good support system, which really helped me get
through it. And so now that you've had the surgeries,
how are you feeling today? I have my good days
and my bad days for sure. I'd say with the chronic
coughitis, That has been a little bit of a struggle
to get that figured out. I was on Intivio for
a couple months earlier this year, and that didn't,
that stopped working. So I'm still in the phase
of Zell Jantz where we're waiting to see if it
will work or not. I just started it not too long
ago. So I do struggle with a lot of chronic fatigue.
I definitely am a napper. That has been a little
bit difficult to navigate just because I am a
college student and I work as well. So I was
just struggling to get that. But I'd say I feel
well enough to get through the day. Typically,
when I speak to IBD patients who've had surgeries,
the consensus is that surgery has really given
them their life back. And even though the struggles
continue with IBD because it's not necessarily
a cure either, They do feel better. They do get
to enjoy life more. Does the same thing apply
to you? I would say I have ups and downs when
I can get my cathitis under control. I definitely
do have, I do feel like it did give me my life
back. But when I'm dealing with like active flares
of cathitis, I do struggle a little bit more.
I would say I don't struggle as badly as I did
before having the surgery. So in a sense. Yes,
it was helpful for me. And my goal is to eventually
get to that point where I'm like, it fully gave
me my life back. But you're not there yet. Not
quite, but I'll get there. Yeah, you'll absolutely
get there, 100%. Now, throughout your journey,
Did you have like one specialist, one gastroenterologist
that you've worked with over the years? Or did
you have several? Because I always think that
it's quite important for people with IBD to have
a strong relationship with their doctors, right?
How was that for you navigating to treatments,
failing treatments, surgery? Did you have that
kind of a specialist? And what is your relationship
with your doctor today? Yeah. So when I first
got diagnosed, I saw a pediatric gastroenterologist
and I saw him for about two years. And once I
failed Remicade, well, let me rephrase, when
Remicade failed me, because IBD patients, we
don't fail our meds, they fail us. But once Remicade
stopped working, he was like, well. I can either
do surgery or we can refer you to somebody else.
I'm not sure what to do with you anymore. So
I got, yeah, I got referred to a complex IBD
center, which I still go to. It's still pediatric,
but now I have a full team that helps me. I have
my gastroenterologist. I have a colorectal NP,
a colorectal surgeon, dietitian, social worker,
and IBD nurses. So I have a very well -rounded
team and I have a very good relationship with
my team. And in what ways is your team supporting
you as someone who has had surgery, right? Because
yes, you're dealing with fatigue, IBD is not
over, but not having a colon has its challenges
by itself. In what way are they supporting you,
educating you, helping you along in that aspect
of your condition right now? Um, they're very
good about getting back to me quickly, which
I appreciate. And they're good at letting me
know, like, what could be causing some of my,
like, symptoms that I have going on. And I feel
like they always are there for me to answer questions,
even if I think, like, oh, my God, I don't know
if I want to ask that. That's kind of a silly
question. They always answer and don't make me
feel like it's a dumb question. So they've been
very supportive in that sense. I have a good
relationship with my team. I feel like they care
about me as a person and not just a patient.
And they care more than just my IBD. They care
about every aspect of my life. And I've really
appreciated that from them. Yeah, that's great
to have. So we talked about this already. You
were quite young when you were diagnosed. You're
still young, but... You've been on this journey
for enough years to at least see your life change.
If you look back at IBD specifically, the colitis,
the surgeries, how has this changed you as a
person, do you think? I would say IBD has definitely
made me a more strong, resilient person, and
it's helped me have more empathy for others.
I have learned that I can do hard things. I tell
myself that. All the time, that's kind of my
mantra. If I tell myself I can do hard things
and then I do whatever it is I need to get done,
it gives me more of a sense of accomplishment.
So that has been very helpful for me. But it
has helped me learn how to advocate for myself
and advocate for others as well. And so where
do you take the courage from to sort of keep
fighting? I would love to become an IBD nurse
practitioner someday and be able to help other
people who have dealt with similar things that
I have dealt with. So remembering my why has
been very helpful for me. Why do I want to get
out of bed? Why am I going to work? Why am I
showing up to school? If I remember my why, then
that is what has helped me continue to show up
every day for things. And you mentioned earlier
that you were pretty open about your disease
with your friends, right, with your family. And
you and I, we connected on Instagram, and I think
you're a pretty open person on there as well,
on TikTok as well. So what would your message
be to young people that are going through a similar
journey than you have, especially sort of, you
know, facing surgeries or just having surgeries,
what would you tell them to, especially when
they're afraid, right? Because when I speak to
people and the word surgery pops up, fear is
the first thing that pops into their minds, right?
This uncertainty. So as somebody who's went through
this, what's your message to those people? I
would tell them that it's going to be okay. You
are stronger than you think and give yourself
credit for. We can't obviously choose to have
the surgery, but we can choose how we respond
to these situations that arise in our lives.
We can either go through it with a negative,
pessimistic attitude, which there is a time and
place for that. I definitely am not positive
all the time. I have my moments. But I feel like
you can either be sick and negative or sick and
positive, and one feels a lot better than the
other. It's easy to be scared for getting surgeries
and stuff like that, and that's totally understandable
to feel that way. But if you think about it,
nobody can predict what's going to happen in
their lives. So kind of sitting around and thinking,
when's my next flare, when's my next surgery,
that kind of stuff, you can kind of scare yourself
into a spiral. But if you just think about nobody
knows what's happening and nobody knows what's
going to happen in their future as well, it kind
of helps. Looking at the content that you produce,
most of it is tied to, we can say, a specific
sense of humor, right? Is that something that
you developed over the years, or have you always
been the kind of person with a little bit more
of a dry sense of humor? I would definitely say
I've always kind of had a dry sense of humor.
That's very much how my family is. We joke with
each other all the time. We're sarcastic, that
kind of stuff. And using humor to cope and like...
tough situations has proven to be very helpful
for myself and i hope that it can help other
people relate to situations i try to post things
that i hope one person will relate to and think
oh at least i'm not the only one that feels like
that so that's kind of my my goal with posting
content sarcasm i can definitely relate to that
so that's why that's why you know your content
speaks to me pretty easily so you you say that
this Sense of humor is present in your family
as well. Because you went through this during
a crucial period, the teenage years essentially,
looking back, do you feel that your family and
also with the history of IBD, did they baby you
through this in a sense? Or what was the type
of support like that they gave you? I would definitely
say they did not baby me. We have a lot of family
history of different autoimmune diseases and
kind of think of it like everyone has their thing
that they struggle with. They were there to support
me, like going to appointments with me or...
when I wanted like needed a down day like watching
movies with me that kind of stuff they've been
very supportive in that aspect and I'd say with
talking about my symptoms and how I feel and
stuff I ironically most of the time keep it to
myself except for social media I also see a therapist
as well which has been very helpful for me but
I don't love to I don't know, like complain about
the way that I'm feeling to my family all the
time. Cause if I told them every time I didn't
feel well, that would be all the time every day.
So I just, I only tell them if it's something
like pretty, pretty dramatic or big going on.
And I imagine, so if you have family members
that are suffering from the same or similar conditions,
there's sometimes a risk that they, I don't know,
may look at your symptoms or may look at your
condition or mood and say, hey, you know, I went
through this or your aunt went through this.
So suck it up, right? Toughen up. Did you feel
any of that as well? Or did they just really
treat you and your colitis as you are your person
with your own disease and you're going to go
through it the way you're going through it? They
definitely did the second option with that. They
never told me like to tough it up and stuff.
I'm the only one in my family who's had surgeries
for my IBD. So I do talk to my aunt a lot about
like we complain to each other and it's pretty
great. And I think it's a good weight event.
But they definitely don't tell me to like suck
it up and stuff. They've been really good about
that. In high school, I'd have days where I'd
be like, I'm too tired to. go to school and stuff
like that and they would be like uh we'll try
to go and see if you can get feeling better so
they definitely encouraged me to try to do things
which i do appreciate because if they didn't
do that i probably would have never gone to school
so that was good there was like um good gentle
nudging but never like suck it up energy i guess
yeah so no no real comparisons but more lifting
Lifting each other up, right? And facing similar
challenges. And that's really great. So growing
up in a family with a lot of autoimmune diseases,
especially also IBD, according to you, what do
you think are some major misconceptions about
colitis or Crohn's out there? One of my biggest
ones is like IBS and IBD are the same thing.
They are definitely not the same thing. Another
one that I have is that some people think Crohn's
is worse than colitis. And I think that's too
broad of a statement to make because I think
IBD affects every individual person differently.
And there's different severities of both diseases
with different comorbidities of both diseases.
So flat out saying one is worse than the other,
I don't think is an accurate statement to make.
Those are kind of my two main ones that I have.
That's a really good one, actually. And then
I think, if you don't mind me adding, the other
one is that surgery definitely does not cure
IBD, right? I mean, you're still resting it in
a way, even though your life is improving, it's
not over, the fight. Now, if you go back to being
15 years old, And you're sitting in a doctor's
office and he or she just told you that you have
ulcerative colitis. If you could speak to yourself
on that day, what would you say? I would just
say everything's going to be okay and everything's
going to happen the way it's meant to. Not to
be too scared and life isn't over, it's just
starting. And IBD isn't all negative that I got
a lot of positive things out of IBD. I've gotten
a lot of connections to other people. I've had
a lot of personal self -growth. So it's not all
terrible. I probably tell myself that. And that's
a really good transition to my next question
is where you are now, despite your struggles,
I'm sure that IBD has brought you. these positive
aspects. Aside from what you just mentioned,
how else do you think that this disease has made
you a better person and also has enriched your
life in a way? It has definitely taught me empathy.
And I think part of the empathy I've learned
is also from working on the other side in the
medical field, realizing a lot of people have
hidden struggles that they don't talk about.
And you don't know that they're going through,
but they are going through it and they still
show up every day. IBD is an invisible disease
for the most part. So it can be hard sometimes
to express the struggles. And I think that's
part of why like being online is important, at
least for me to advocate to make IBD a little
bit more visible. So that would kind of be the
main things. And that's kind of a hopeful statement.
And I always like to end the show with a little
bit of hope. And the question that I would like
to ask, even though it might be difficult to
answer, but I still think that everybody sort
of has their own opinion or their own wishes.
Do you think that we will see a cure to IBD in
our lifetime? I definitely hope so. I know the
Crohn's and Colitis Foundation is doing a lot
to get towards that. They have a lot of different
events. They have the Take Steps event, like
different charities. And I know there's more
research happening every day. And we're getting
closer and they're coming out with more and more
biologics that can put people into more of a
remission state. So I am hopeful that we will
see a cure in my lifetime, but I am not 100 %
sure because there's a lot of other diseases
that have been looking for cures for a long time
as well. So I don't know, but I hope so. Yeah,
science is important, but you mentioned it. I
think community, community support is equally
important, especially for the mental aspect of
those suffering through Crohn's and colitis.
So Kinsey, thank you so much. This has been a
great conversation. And the only thing I can
tell you is, you know, keep fighting and also
keep bringing that sarcasm to your online content.
I'm sure there's a lot of other people that just
besides me out there who appreciate that as well.
And I wish you nothing but the best on your continuing.
IBD journey. Thank you. That's it for today's
episode of Talking S*** presented by Colitis
Unfiltered. I'm Frank Tabering and if this hit
home or hit your gut, do us a favor, subscribe
to the show and follow us at Colitis Unfiltered
on YouTube, Substack, Instagram, Threads, TikTok
and Reddit. We'll see you soon for more inspiring
stories from the bathroom floor.