I think for me it's been going back to a bit
of what's controllable and what's not controllable.
And so the fact that in the future I could need
surgery outside of my control. The fact that
things could get worse in the future partially
in my control. And so that fear I think I've
channeled into a more positive way of living
my life. in terms of really holding myself accountable
to sleep, stress, diet, making sure I take my
meds, making sure I'm going to all my doctor's
appointments, getting my labs done, etc. On today's
episode of Colitis Unfiltered, I am thrilled
to talk to Kyle, who got diagnosed with Crohn's
disease at age nine in Atlanta, Georgia. So Kyle,
it's a pleasure to have you on the show today.
Yeah, thank you so much, Frank. Really excited
to talk. So let's go way back to the beginning
of your IBD journey, age nine. So I'm assuming
you still have at least some memories of how
this all happened. And my first question I'd
like to ask is really how it all came to be.
And that means sort of first symptoms or like
the moment where either you or your parents or
all of you realized that something was wrong.
Can you take me a little bit about through how
this IBD started to manifest with you specifically?
Yeah, it's actually funny. About, I think, three
months before I started exhibiting symptoms,
I remember I was walking maybe like in a park
with my dad. And I think I just learned about
tapeworms. So we were talking about like what
the experience of a tapeworm would feel like.
And I remember at the time I was just as a typical
kid eating a ton of food and just always so hungry.
And so three months later. And granted, this
was almost two decades ago. So I think a lot
of the details have slipped, but the symptoms
started hitting. And I remember for me specifically,
I was throwing up. I was having really, really
intense stomach pain. And then the very typical
Crohn's symptoms of diarrhea, going to the bathroom
a ton. There was probably blood in my stools
as well, feeling very tired. I remember my mom
taking me to the pediatrician and they were testing
me for stomach flu and thought maybe it's just
some type of stomach bug. I think as a kid, it
was there's a bit of I just feel really sick
and we're trying to figure out what it is. And
I'm shuttling in and out of so many different
doctors and they're not really telling me. They're
more talking to my parents than talking to me
on like what's happening, what they're testing
for, et cetera. And so as a kid, I just remember.
I'd go into the doctor, I'd get pricked in the
arm and they'd take blood or they want to do
certain tests or eventually, you know, after
multiple months of all these different tests,
they want me to go have a colonoscopy. And my
parents, I think they made it a bit easier on
me. They they gave me like incentives to to like
look forward to some of these things. And so.
When I started a Remicade a few years later,
we had like this contract where like I would
eat like X amount of fruits per week. And like
every single time I got Remicade, we would go
get Chick -fil -A right before we got Remicade.
And that was my treat. And so it made it so that
like I look forward to some of these milestones.
It's like I remember when I was going into the
doctor, you know, when I was first getting diagnosed,
I think like one of the treats was it was like
a Game Boy or something like that. And so I remember
a lot of the time. When the doctor was talking,
I think I was like not even really paying attention
to what he was telling my parents. So you just
said that you might not have been paying much
attention, but in terms of diagnosis, like was
it the doctor that tried to talk to you directly
and explain to you a little bit about what you
had? Or was it your parents who explained any
aspects of Crohn's disease to you? How did you
become familiar with what you actually were suffering
from? Definitely partially. Probably a big part
my fault, but also maybe a bit of a failure on
the health care system. No one ever really explained
to me what Crohn's was, what caused it, why it
manifests. And it wasn't until I got to college,
like over a decade later, that doctors started
throwing around jargon and I started doing a
tiny bit more research looking online. When I
was first diagnosed, my doctor at the time said,
You have Crohn's disease. That's why you're going
to the bathroom so often. That's why you're having
this really, really intense pain. We're going
to put you on meds for it. In addition to the
meds, you can eat popcorn, nuts, seeds, beans,
like those four foods or like you'll have to
get your intestines taken out. And so I spent
the next decade plus of my life not really knowing
what Crohn's is and then just being like, OK,
if I have these specific foods, they're somehow
just going to get stuck in my intestines or.
rupture something and then i'm gonna have to
have a major surgery and have uh like a colostomy
bag for the rest of my life it was a very very
long journey i think and it ended up being more
self -directed until i found a clinician who
could help yeah that's pretty uh pretty intense
for somebody to say hey if you eat popcorn or
beans you're gonna have your intestines taken
out i mean that's uh i'm not sure that's sort
of the norm or the typical protocol but uh it's
definitely the first First I hear of a doctor
saying that to somebody, especially a kid, you
know, and so, okay. So long journey, age nine,
it's a crucial age because you're not even in
your teens yet and they are coming and you are
entering that period of your life with a condition
that nobody really explained to you exactly,
but you know, obviously what your symptoms are.
Before we kind of move to the treatments. How
did you start navigating life as a young boy
still with this newly diagnosed inflammatory
bowel disease? I think I kind of, in a lot of
ways, denied the existence of it. And I know
we're going to get into treatment later, but
I've never been in remission. I've always had
active disease. I've always had active symptoms.
And so I've just gotten, through that period
of my life, I've gotten really good at hiding
those symptoms. in an outward way. And so I think
a lot of it was feeling embarrassed. I mean,
when your main symptoms are the one that's maybe
most frustrating at times is having to go to
the bathroom a lot and having diarrhea and having
stomach pain. It's embarrassing things to talk
about, especially as a kid. And I think a big
piece of me felt ashamed of having those symptoms.
And so I didn't want to be defined by them. I
would try to make it as unassuming, non -apparent
as possible. And on top of that, and this also,
I mean, this extended on until after college
for me. And I think I did a lot of things in
spite of having Crohn's and really tried to push
myself beyond what my doctors told me I could
or couldn't do. Maybe sort of unconsciously you
try to compensate for something by trying to
push your body, especially, you know, again,
you know, dealing with something that is or can
be so violent as someone of a young age that
doesn't really understand how it works. So navigating
this disease as a teenager. Were you ever angry
at other people, jealous of other people, envious
of other kids, friends, people that you went
to school with around you because they seem to
be living a quote -unquote normal life compared
to yours? I think the hatred was more directed
inwards. I really hated this feeling that my
body was failing me. It felt like no matter what
I did, even if I listened to my doctor and took
all my meds, I would still feel really, really
sick. And I think this anger also fueled me in
some ways where the symptoms were always there
no matter what. And it would fluctuate a tiny
bit. It would get a little worse or get a little
better. And so I felt it didn't really matter
what I did lifestyle wise or like taking time
to rest or there'd be like other things doctors
would tell me like. Take it easier. You don't
need to be trying to do everything all at once.
And my view was I'm going to have this for the
rest of my life if I continue to listen to doctors
and I continue to listen to what my parents are
telling me, then I'm just not going to do anything
in life. I'm just going to stay home. I'm going
to feel really crappy all the time. And that's
not the life that I wanted. And so it was this
mixture of... Not wanting to feel constrained
by the disease and a really strong deep -seated
anger and a feeling that my body was failing
me. But not directed really towards other people.
We'll get back to this sort of, you know, feeling
that your body betrayed you and anger towards
your body. But before we get to you mentioned,
you know, you've never really achieved remission.
Talk us a little bit through the different treatments,
medications that you were on. And I'm also curious
to see, you know, how it has progressed over
the years, because obviously you're no longer
nine years old. There's a whole bunch of years
in between. And yet you say you've never really
achieved remission. How did Crohn's evolve from
diagnosis to today, essentially? Yeah, yeah.
So my inflammation. i think was probably more
severe at certain points in my my patient journey
when i say i've never been in remission i mean
i've always had active inflammation and i've
always had symptoms but i haven't always been
in a flare when i was first diagnosed i don't
remember i know that there's step therapy so
you fail out of all these different meds the
first med that i landed on that worked for a
sustained period of time was remicade and As
a kid, that meant I would go into an infusion
clinic. Initially, it was every two months. Very
quickly, it wasn't working, so I went down to
one month. So every month, I'd go in and get
a three -hour IV. On top of this, in college,
maybe, or maybe towards the end of high school,
they added methotrexate on top of that. And so
then there was a ton of other pills that were
put on top of that to deal with the side effects
and then some of those other... Pills had other
side effects. And so on the Remicade, I still
had active symptoms. I was still having extreme
abdominal pain. I would still have diarrhea,
blood in my stools, fatigue. But the inflammation
wasn't increasing. And I think my doctor felt
with the medication available at the time and
the risk of changing to a different medication,
it was under control enough to reduce future
surgery risk. When I was in college, I started
developing antibodies to the Remicade. And so
the medication was just no longer effective in
general. This was also compounded by a C. diff
infection that I got. And so as I was becoming
immune to the Remicade, we started experimenting
with different medicines. So I tried Antivio.
I tried Stelara. Neither of those worked. Then
I got put on prednisone, which... It's an effective
medication for sure. That's the worst experience
I've ever had in my life with a medication. There
are periods where I'm still having like really,
really intense abdominal pain. And so my doctor
prescribes me tramadol. And so I have to make
a choice when I'm going to class of, do I want
to take my tramadol and be high on pain meds,
struggling to pay attention? Or do I want to
be in a ton of pain, still struggling to pay
attention? Eventually, We found the C. diff and
there was still active inflammation, but the
prednisone tamped down the inflammation, getting
rid of the C. diff, which was also a really arduous
process with expensive medications. And eventually
I had to get a fecal transplant, which is also
something that I found super embarrassing and
super gross. After the prednisone, we were pretty
much out of medications. That's the way that
my doctor pitched it to me. And so they wanted
to put me on a clinical trial for a new medication
that would do something to my sperm where I couldn't
have kids. And so I'm a sophomore in college
being told that my last opportunity is to take
part in some experimental drug that will then
make me not able to have kids in the future.
And they're not even sure it'll work. I think
the last step before that was, let's try Humira.
because I hadn't done that one yet. But the doctor,
I don't think, was super confident that was going
to work. So I start the Humira and see some positive
indications. Once again, I'm not having my inflammation
go down to zero. I still have some active inflammation.
I still have symptoms. I still have, when I'm
walking to class, I'm throwing up in the mornings.
I'm still having diarrhea. And also I'm in college
doing a lot of things that are probably not healthy
for my body. I remember one thing, which in retrospect
seems so stupid, but when I would go to the gym,
I would force myself to stay active and to go
to the gym, but I would do pre -workout every
morning, which has so much caffeine in it, which
is so bad for the GI. But there's like six months
where I was just doing pre -workout every morning,
which is absolutely insane. But now I've been
on Humira since around 2017, 2018. So seven,
eight years. I have been on the Humeromethotrexate
combo since then. And upon graduating college,
entering the working world, still symptomatic.
When I moved to Boston, new provider, she set
me up with an IBD dietician. And so I learned
a lot more about diet and the impact of diet.
And over the years, I'd heard so much conflicting
advice on that. At my university, I didn't really
believe in diet. You go online to these Facebook
groups or Reddit, and people promise all these
miracle diets. My family had always been sending
me these different miracle diets or telling me
to try CBD or go try acupuncture or go try yoga
or just other random, more holistic medicine
alternative treatments, which some of them probably
do help some people. They just hadn't worked
for me. And I think I'd written off diet as one
of those woo -woo treatments that don't actually
work. Living in Boston with this new provider,
the dietician, I think, gave me some of the initial
building blocks. And over time, I still have
active inflammation, but my symptoms have gone
down a lot more. And this is the closest I've
ever felt to remission at this point, where it's
still humeromethotrexate and then being a lot
cleaner in what I'm eating. And then the last
update. is methotrexate's not great. There's
risks for that and methotrexate toxicity. And
so three months ago, I started Tremphia, which
is a newer drug. And the hope is to wean me off
of the methotrexate and replace that with the
Tremphia, which could potentially be safer for
my body. So I'm only a few months in. I'm feeling
better, but it could be a bit placebo. I think
it'll take time to... to really see and also
probably need to do some more like fecal calprotectin
inflammation testing to see if it's actually
impacting the underlying disease. Yeah. So long
journey to get closer to remission, but not quite
there yet either. How do you keep hope alive
when it feels like your own body is basically
constantly working against you? Going back to
earlier in my journey where I really hated my
body and fought against it. And then getting
to a point where you just accept that's how your
body functions. And giving it more grace when
you have flare -like episodes. You're having
more symptoms at a period of time. And moving
past even just accepting it to having compassion
for your body. I think... reframed my mindset
and so when my disease is more active when I'm
feeling more symptomatic I definitely feel more
melancholy and maybe a bit more frustrated with
with my body but the periods where I'm not feeling
so sick that I can't leave home To me, my Crohn's
diagnosis becomes something less central to who
I am. Over the years, I think I've pushed past
a lot of the barriers or guardrails that other
people have put on me or constructed around me.
And I know, I think, what I'm capable of. I guess,
like, to be more concrete on this, when I was
in college, I remember my doctor telling me,
you can't drink. You shouldn't be going to all
these parties. I really wanted to study abroad.
You can't study abroad. You really shouldn't
be traveling at all. My first job out of college,
I was working a job that was 60 to 80 hours a
week. My next job out of college after that was
100 plus hours per week. So very intense. A lot
of the time, still doctors saying you shouldn't
be traveling. I love hiking. I love backpacking.
Going on a seven -day... backpacking camping
trip not something you should be doing and so
i think i lumped all of this you shouldn't be
doing these things into one and just felt like
i was being constrained by these clinicians and
by other people and it took a lot of time for
me to start to parse out and to separate like
yes there are certain things i shouldn't be doing
as much of i should not be drinking heavily.
I should really be conscientious that I'm getting
eight hours of sleep and I'm getting adequate
exercise per week. On the other hand, I can travel.
I can go hike and camp. I'll have to take more
precautions. I'll have to bring certain types
of food with me. I'll pack a lot of Imodium.
I'll pack electrolytes, my Zofran, my wet wipes,
all of that. And so I think it's a bit of realizing
there are some things outside of my control.
That like if I drink alcohol, my body is going
to react. But there's a lot of things in my control
that I can learn to deal with. And so the hope
is, where the hope springs for me is, I'm a lot
stronger than I give myself credit for at times.
And I think in general, I love my body and I
trust my body to be able to do what it can do.
And so I have... hope through this confidence
in myself where, yes, there are the uncontrollables,
but for the controllables, I can take care of
those. And so I can make the best type of life
that I can by focusing on those controllable
factors. Yeah. I think that's a very positive
approach, especially if you're still dealing
with active disease. Now, how do you deal with
fear? in terms of the future right when it comes
to your Crohn's because you've burned through
a lot of medications yes you found a GI or medical
team now that supports you much better than maybe
the doctors before but yeah how do you deal with
this thinking which I'm sure you have because
or at least you've thought of it right like hey
there's not many many treatments left I still
haven't really fully achieved remission. What
is going to happen to me, you know, if my symptoms
get worse? How do you navigate this sort of fear
that most people with active IBD still have as
they sort of, you know, move along in their journey?
Yeah. I think for me, it's been going back to
a bit of what's controllable and what's not controllable.
And so the fact that in the future, I could need
surgery outside of my control. The fact that
things could get worse in the future, partially
in my control. And so that fear, I think I've
channeled into a more positive way of living
my life in terms of really holding myself accountable
to sleep, stress, diet, making sure I take my
meds, making sure I'm going to all my doctor's
appointments, getting my labs done, et cetera.
and staying on top of that. And there are periods
where that fear spikes. And so when I'm having
a conversation with my doctor and she's telling
me, yeah, the inflammation has increased compared
to your last appointment. If it keeps progressing,
we'll have to explore a different medication.
And if there's no other medications left, then
like surgery and talking through that. I think
those are, they're more temporal fears. based
on the condition and how my disease is progressing.
But I try not to make myself overly anxious or
to focus on it too much when it's things that
are outside of my control or things that may
or may not happen. Yeah, it's a good approach.
I think it's a very good approach. So you've
been through a very long Crohn's journey. And
like you mentioned earlier, you started off really
not knowing too much about the disease. You went
through phases of embarrassment, maybe a little
bit of isolation as well. But then you sort of
got older. You got wiser. You learned to live
with the disease in a different way. You sort
of realized that Crohn's started to change you
as a person as well. And after speaking to you,
before we started... the the episode here you
know we talked about advocacy so i think you've
also started coming out of your shell a little
bit and started to share your own journey but
you've You've gone a little bit beyond just advocating
or raising awareness because you launched a project
that's called TryTummy .com. And you can correct
me if I'm wrong, but if I just sum it up, it's
sort of an app providing some sort of IBD and
IBS support. Talk to us a little bit about what
this is, what it does, and then also what...
trigger your experience in you to say, hey, let's
take my experience and do something positive
with it? I guess I'll start with what triggered
me, and then I can get into what we're doing
at Tummy. So my first job out of college, I mentioned
it was a corporate job. It was an intense workplace
environment. You're working very late hours every
single day. And this was also COVID. I graduated
2020, and so I started this job 2020. And so
it was very isolating. And I remember my team,
every night at 7 p .m., we would do like a checkout
call where you would chat with the team and say
like what you're going to work on for the rest
of the night. And you'd also sometimes just chat.
You would shoot the shit a little bit. And I
remember one night we were all sharing different
things about ourselves. And I mentioned some
of my anxiety about how I was going to manage
this really intense job. and my health. And so
from this conversation, they told me that I should
get involved with this disability support group
that was at the company. And I think I had reached
out and maybe didn't get a response or it just
wasn't very active. And so I decided to start
a support group within my own office. I was having
all these conversations with people that also
had chronic diseases, invisible disabilities,
visible disabilities, and realizing how similar
their experience was to mine. And I felt so much
meaning and purpose in being able to relate and
help these people. And so I, after that, moved
to Boston for another job and started to feel
a sense of ennui, really. settle in where I wasn't
doing anything meaningful. I didn't feel like
I was making a positive impact in the world.
And I still really wanted to do something to
help the chronic disease population or folks
in similar situations to myself. And so I decided
to go back to school in 2024 to pivot into entrepreneurship,
to start something that would help chronic disease
patients. And so I spent my first year exploring
different ideas. Towards the second half of my
first year, we had one class on operations where
it was mapping out the process flow of a certain
task and figuring out where the pain points are
in that. And so I was like, why don't I just
map out the process flow of what it's like to
be a Crohn's patient? And so I mapped out from
diagnosis to even pre -diagnosis to getting diagnosed
to getting your treatment to managing flares
to continuing on. What are all the different
steps that a typical patient goes through? And
I identified one point that had been really,
really painful in my life, which was around diet.
And that was in figuring out which foods are
triggering my symptoms and which diet actually
works for me to feel better. And as I had more
and more conversations with patients, I realized
that this wasn't just a me problem. This was
a problem that a lot of people were having. And
it inspired us to start building Tummy. And so
the idea behind Tummy is that we provide personalized,
actionable insights for what foods and other
lifestyle factors are triggering people's symptoms.
The long -term vision is to create something
holistic so that end -to -end, a patient can
come on, they can write down what their diagnosis
is, age, other demographic factors that might
be relevant, and then... Over time, as we learn
more about them and their specific condition,
their specific reactions, we're able to provide
clearer patterns and insights into what foods
are specifically triggering them. And as a patient
myself, I've tried so many different diets. I
saw a dietician and they give you this food journal
where you're mainly writing everything down and
then you're looking through it trying to figure
out, okay. Was it because I had potatoes this
one day or was it because I had something fried
or is it some other ingredient that I'm not even
realizing? And so really what we're trying to
do is to simplify that process for the patient
and to give them more control in their journey
so that they don't have to worry. They don't
have to spend as much time writing down, logging
every single thing and then figuring out the
patterns. Instead, you can just take out your
phone, take a picture of what you're eating,
log when you have symptoms, and then let us on
the back end use machine learning to figure out
like specific to you. what is causing your symptoms,
and what can you change to feel better. That's
a great initiative. And this is at trytommy .com.
So people should definitely check that out, especially
for people. And I really, I agree with you. I
mean, you yourself sort of brought the aspect
of nutrition into sort of your disease management,
and it really seems to be going into that direction
as well. So this is a really cool project. In
the spirit of helping people, as we kind of get
to the end here, Especially as someone who spent
many, many years sort of looking for a mission
without too much success, like we discussed,
what would be your message to folks who are struggling
with active Crohn's and who are potentially not
really seeing an end in sight, right? People
who are also going or jumping from one treatment.
to another without too much improvement based
on your own experience with the disease and how
the disease has changed you. What would you tell
those people? Number one is community. It is
so important to have a support system around
you because Crohn's, colitis, IBD in general
can be so isolating and it's very easy to self
-isolate as well. And so making sure that you
You might not have a ton of energy. You might
not be able to go out and see people all the
time, but make some effort, I think, to sustain
that community and also just be open. I was so
worried about people seeing me as weaker or less
capable or less able. But when I shared, hey,
I'm feeling like really sick today, I'm having
like these symptoms, people were very accommodating.
Like people were not like, oh, you're weaker,
you're less capable. People were like, oh, how
can I help? What can I do? And so I think learning
to be okay with relying on others, especially
when you're an active disease, is so, so important.
On top of that, there are some darker periods
where it does feel hopeless. I think it's difficult
to give generalizations or platitudes of, like,
you will find a solution or... like you will
find a cure the thing that works for you because
it's it's so person to person you might end up
having to get surgery but I think one thing that
kept me going was knowing that even during the
periods where my disease was super active and
I would feel so so bad every day were the little
moments of happiness or the little moments of
beauty that I saw in the world and really savoring
those things even when I was You know, at the
deepest, darkest depths of my depression, just
seeing snow fall. I went to school in Tennessee.
It never snows there. And seeing, you know, just
like a white blanket on the ground outside with
all the snow out there. Or you have a friend
who comes by and brings you food one day, even
though you didn't ask, and you realize how kind
and nice people are. I think just like really
savoring those small, beautiful little moments
in your life. um to to push through at least
some of the darkness is that what you would tell
your own self as a nine -year -old if you could
go back in time and and talk to that nine -year
-old kid yeah it's it's funny because i do a
lot of advocacy work with the crones and colitis
foundation as well um so i've spoken since a
kid spoken at a few events and i do lunch and
learns and i've helped on a lot of different
events and last year i was the the mission speaker
for one of their fundraising events. And I had
like an ending line of like, what did I wish
nine -year -old me knew at the time? And I think
the biggest thing is it's okay to not feel okay.
And it's okay to be open about that. And I think
the more that you don't try to carry the burden
of pain on your own, the easier it becomes to
share that pain with others and to sustain onwards.
Honestly, I think that is the perfect word and
perfect phrasing to end it. I think you've said
it all. And I want to thank you so much for sharing
your story and also what you're doing. I hope
for you that you'll find some peace and that
at least, you know, even though you haven't...
reached remission yet that you kind of stay where
you are now with your combination of therapy
and also nutrition and um keep advocating and
and keep doing that that work you know in the
name of advocacy and ibd awareness uh it's really
great so thanks so much kyle and uh all the best
to you yeah thank you so much frank and i really
love what you're doing with this show and and
all the other work in the space um i feel like
visibility is so important and providing community
and Just hearing other people's stories is so
transformative. And so thank you so much for
doing this. And we're going to both keep doing
that. Great. Thank you, Kyle. That's it for today's
episode of Colitis Unfiltered. I'm Frank Tabering.
And if this hit home or hit your gut, do us a
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