Latest / Crohn's & Colitis Unfiltered / Crohn’s at nine, control and letting go: Kyle’s IBD evolution

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Crohn’s at nine, control and letting go: Kyle’s IBD evolution · Crohn's & Colitis Unfiltered

0:02
I think for me it's been going back to a bit
0:04
of what's controllable and what's not controllable.
0:07
And so the fact that in the future I could need
0:13
surgery outside of my control. The fact that
0:16
things could get worse in the future partially
0:20
in my control. And so that fear I think I've
0:24
channeled into a more positive way of living
0:27
my life. in terms of really holding myself accountable
0:31
to sleep, stress, diet, making sure I take my
0:36
meds, making sure I'm going to all my doctor's
0:38
appointments, getting my labs done, etc. On today's
0:42
episode of Colitis Unfiltered, I am thrilled
0:45
to talk to Kyle, who got diagnosed with Crohn's
0:48
disease at age nine in Atlanta, Georgia. So Kyle,
0:52
it's a pleasure to have you on the show today.
0:54
Yeah, thank you so much, Frank. Really excited
0:56
to talk. So let's go way back to the beginning
1:00
of your IBD journey, age nine. So I'm assuming
1:05
you still have at least some memories of how
1:07
this all happened. And my first question I'd
1:09
like to ask is really how it all came to be.
1:12
And that means sort of first symptoms or like
1:14
the moment where either you or your parents or
1:17
all of you realized that something was wrong.
1:21
Can you take me a little bit about through how
1:23
this IBD started to manifest with you specifically?
1:28
Yeah, it's actually funny. About, I think, three
1:31
months before I started exhibiting symptoms,
1:33
I remember I was walking maybe like in a park
1:37
with my dad. And I think I just learned about
1:41
tapeworms. So we were talking about like what
1:44
the experience of a tapeworm would feel like.
1:47
And I remember at the time I was just as a typical
1:50
kid eating a ton of food and just always so hungry.
1:53
And so three months later. And granted, this
1:58
was almost two decades ago. So I think a lot
2:01
of the details have slipped, but the symptoms
2:03
started hitting. And I remember for me specifically,
2:06
I was throwing up. I was having really, really
2:10
intense stomach pain. And then the very typical
2:14
Crohn's symptoms of diarrhea, going to the bathroom
2:17
a ton. There was probably blood in my stools
2:20
as well, feeling very tired. I remember my mom
2:27
taking me to the pediatrician and they were testing
2:30
me for stomach flu and thought maybe it's just
2:32
some type of stomach bug. I think as a kid, it
2:35
was there's a bit of I just feel really sick
2:37
and we're trying to figure out what it is. And
2:40
I'm shuttling in and out of so many different
2:42
doctors and they're not really telling me. They're
2:46
more talking to my parents than talking to me
2:48
on like what's happening, what they're testing
2:51
for, et cetera. And so as a kid, I just remember.
2:55
I'd go into the doctor, I'd get pricked in the
2:58
arm and they'd take blood or they want to do
3:00
certain tests or eventually, you know, after
3:04
multiple months of all these different tests,
3:05
they want me to go have a colonoscopy. And my
3:09
parents, I think they made it a bit easier on
3:13
me. They they gave me like incentives to to like
3:19
look forward to some of these things. And so.
3:22
When I started a Remicade a few years later,
3:24
we had like this contract where like I would
3:27
eat like X amount of fruits per week. And like
3:29
every single time I got Remicade, we would go
3:32
get Chick -fil -A right before we got Remicade.
3:35
And that was my treat. And so it made it so that
3:37
like I look forward to some of these milestones.
3:39
It's like I remember when I was going into the
3:41
doctor, you know, when I was first getting diagnosed,
3:44
I think like one of the treats was it was like
3:47
a Game Boy or something like that. And so I remember
3:50
a lot of the time. When the doctor was talking,
3:52
I think I was like not even really paying attention
3:54
to what he was telling my parents. So you just
3:57
said that you might not have been paying much
3:58
attention, but in terms of diagnosis, like was
4:01
it the doctor that tried to talk to you directly
4:03
and explain to you a little bit about what you
4:05
had? Or was it your parents who explained any
4:10
aspects of Crohn's disease to you? How did you
4:14
become familiar with what you actually were suffering
4:18
from? Definitely partially. Probably a big part
4:21
my fault, but also maybe a bit of a failure on
4:24
the health care system. No one ever really explained
4:27
to me what Crohn's was, what caused it, why it
4:30
manifests. And it wasn't until I got to college,
4:34
like over a decade later, that doctors started
4:38
throwing around jargon and I started doing a
4:40
tiny bit more research looking online. When I
4:42
was first diagnosed, my doctor at the time said,
4:47
You have Crohn's disease. That's why you're going
4:49
to the bathroom so often. That's why you're having
4:51
this really, really intense pain. We're going
4:53
to put you on meds for it. In addition to the
4:55
meds, you can eat popcorn, nuts, seeds, beans,
5:00
like those four foods or like you'll have to
5:03
get your intestines taken out. And so I spent
5:06
the next decade plus of my life not really knowing
5:10
what Crohn's is and then just being like, OK,
5:12
if I have these specific foods, they're somehow
5:14
just going to get stuck in my intestines or.
5:17
rupture something and then i'm gonna have to
5:19
have a major surgery and have uh like a colostomy
5:23
bag for the rest of my life it was a very very
5:27
long journey i think and it ended up being more
5:30
self -directed until i found a clinician who
5:31
could help yeah that's pretty uh pretty intense
5:35
for somebody to say hey if you eat popcorn or
5:38
beans you're gonna have your intestines taken
5:40
out i mean that's uh i'm not sure that's sort
5:42
of the norm or the typical protocol but uh it's
5:46
definitely the first First I hear of a doctor
5:48
saying that to somebody, especially a kid, you
5:50
know, and so, okay. So long journey, age nine,
5:55
it's a crucial age because you're not even in
5:59
your teens yet and they are coming and you are
6:04
entering that period of your life with a condition
6:07
that nobody really explained to you exactly,
6:10
but you know, obviously what your symptoms are.
6:13
Before we kind of move to the treatments. How
6:16
did you start navigating life as a young boy
6:20
still with this newly diagnosed inflammatory
6:24
bowel disease? I think I kind of, in a lot of
6:28
ways, denied the existence of it. And I know
6:33
we're going to get into treatment later, but
6:34
I've never been in remission. I've always had
6:36
active disease. I've always had active symptoms.
6:38
And so I've just gotten, through that period
6:42
of my life, I've gotten really good at hiding
6:44
those symptoms. in an outward way. And so I think
6:50
a lot of it was feeling embarrassed. I mean,
6:52
when your main symptoms are the one that's maybe
6:57
most frustrating at times is having to go to
7:00
the bathroom a lot and having diarrhea and having
7:02
stomach pain. It's embarrassing things to talk
7:04
about, especially as a kid. And I think a big
7:09
piece of me felt ashamed of having those symptoms.
7:14
And so I didn't want to be defined by them. I
7:17
would try to make it as unassuming, non -apparent
7:23
as possible. And on top of that, and this also,
7:28
I mean, this extended on until after college
7:31
for me. And I think I did a lot of things in
7:35
spite of having Crohn's and really tried to push
7:38
myself beyond what my doctors told me I could
7:41
or couldn't do. Maybe sort of unconsciously you
7:44
try to compensate for something by trying to
7:47
push your body, especially, you know, again,
7:50
you know, dealing with something that is or can
7:53
be so violent as someone of a young age that
7:57
doesn't really understand how it works. So navigating
8:01
this disease as a teenager. Were you ever angry
8:05
at other people, jealous of other people, envious
8:08
of other kids, friends, people that you went
8:10
to school with around you because they seem to
8:12
be living a quote -unquote normal life compared
8:16
to yours? I think the hatred was more directed
8:19
inwards. I really hated this feeling that my
8:23
body was failing me. It felt like no matter what
8:26
I did, even if I listened to my doctor and took
8:28
all my meds, I would still feel really, really
8:32
sick. And I think this anger also fueled me in
8:39
some ways where the symptoms were always there
8:42
no matter what. And it would fluctuate a tiny
8:46
bit. It would get a little worse or get a little
8:48
better. And so I felt it didn't really matter
8:51
what I did lifestyle wise or like taking time
8:57
to rest or there'd be like other things doctors
9:00
would tell me like. Take it easier. You don't
9:03
need to be trying to do everything all at once.
9:05
And my view was I'm going to have this for the
9:08
rest of my life if I continue to listen to doctors
9:10
and I continue to listen to what my parents are
9:13
telling me, then I'm just not going to do anything
9:15
in life. I'm just going to stay home. I'm going
9:18
to feel really crappy all the time. And that's
9:23
not the life that I wanted. And so it was this
9:26
mixture of... Not wanting to feel constrained
9:30
by the disease and a really strong deep -seated
9:34
anger and a feeling that my body was failing
9:36
me. But not directed really towards other people.
9:40
We'll get back to this sort of, you know, feeling
9:44
that your body betrayed you and anger towards
9:46
your body. But before we get to you mentioned,
9:48
you know, you've never really achieved remission.
9:52
Talk us a little bit through the different treatments,
9:55
medications that you were on. And I'm also curious
9:58
to see, you know, how it has progressed over
10:00
the years, because obviously you're no longer
10:03
nine years old. There's a whole bunch of years
10:05
in between. And yet you say you've never really
10:09
achieved remission. How did Crohn's evolve from
10:12
diagnosis to today, essentially? Yeah, yeah.
10:17
So my inflammation. i think was probably more
10:21
severe at certain points in my my patient journey
10:25
when i say i've never been in remission i mean
10:28
i've always had active inflammation and i've
10:31
always had symptoms but i haven't always been
10:34
in a flare when i was first diagnosed i don't
10:36
remember i know that there's step therapy so
10:39
you fail out of all these different meds the
10:41
first med that i landed on that worked for a
10:43
sustained period of time was remicade and As
10:47
a kid, that meant I would go into an infusion
10:50
clinic. Initially, it was every two months. Very
10:53
quickly, it wasn't working, so I went down to
10:56
one month. So every month, I'd go in and get
10:58
a three -hour IV. On top of this, in college,
11:02
maybe, or maybe towards the end of high school,
11:05
they added methotrexate on top of that. And so
11:09
then there was a ton of other pills that were
11:11
put on top of that to deal with the side effects
11:14
and then some of those other... Pills had other
11:16
side effects. And so on the Remicade, I still
11:19
had active symptoms. I was still having extreme
11:21
abdominal pain. I would still have diarrhea,
11:24
blood in my stools, fatigue. But the inflammation
11:28
wasn't increasing. And I think my doctor felt
11:34
with the medication available at the time and
11:36
the risk of changing to a different medication,
11:38
it was under control enough to reduce future
11:41
surgery risk. When I was in college, I started
11:45
developing antibodies to the Remicade. And so
11:48
the medication was just no longer effective in
11:51
general. This was also compounded by a C. diff
11:55
infection that I got. And so as I was becoming
12:00
immune to the Remicade, we started experimenting
12:02
with different medicines. So I tried Antivio.
12:06
I tried Stelara. Neither of those worked. Then
12:09
I got put on prednisone, which... It's an effective
12:14
medication for sure. That's the worst experience
12:19
I've ever had in my life with a medication. There
12:22
are periods where I'm still having like really,
12:24
really intense abdominal pain. And so my doctor
12:27
prescribes me tramadol. And so I have to make
12:30
a choice when I'm going to class of, do I want
12:32
to take my tramadol and be high on pain meds,
12:35
struggling to pay attention? Or do I want to
12:37
be in a ton of pain, still struggling to pay
12:40
attention? Eventually, We found the C. diff and
12:45
there was still active inflammation, but the
12:47
prednisone tamped down the inflammation, getting
12:50
rid of the C. diff, which was also a really arduous
12:52
process with expensive medications. And eventually
12:56
I had to get a fecal transplant, which is also
12:59
something that I found super embarrassing and
13:00
super gross. After the prednisone, we were pretty
13:05
much out of medications. That's the way that
13:07
my doctor pitched it to me. And so they wanted
13:10
to put me on a clinical trial for a new medication
13:12
that would do something to my sperm where I couldn't
13:19
have kids. And so I'm a sophomore in college
13:22
being told that my last opportunity is to take
13:25
part in some experimental drug that will then
13:29
make me not able to have kids in the future.
13:31
And they're not even sure it'll work. I think
13:33
the last step before that was, let's try Humira.
13:39
because I hadn't done that one yet. But the doctor,
13:41
I don't think, was super confident that was going
13:43
to work. So I start the Humira and see some positive
13:48
indications. Once again, I'm not having my inflammation
13:52
go down to zero. I still have some active inflammation.
13:55
I still have symptoms. I still have, when I'm
13:58
walking to class, I'm throwing up in the mornings.
14:01
I'm still having diarrhea. And also I'm in college
14:05
doing a lot of things that are probably not healthy
14:07
for my body. I remember one thing, which in retrospect
14:11
seems so stupid, but when I would go to the gym,
14:14
I would force myself to stay active and to go
14:17
to the gym, but I would do pre -workout every
14:19
morning, which has so much caffeine in it, which
14:21
is so bad for the GI. But there's like six months
14:24
where I was just doing pre -workout every morning,
14:26
which is absolutely insane. But now I've been
14:29
on Humira since around 2017, 2018. So seven,
14:37
eight years. I have been on the Humeromethotrexate
14:43
combo since then. And upon graduating college,
14:48
entering the working world, still symptomatic.
14:51
When I moved to Boston, new provider, she set
14:55
me up with an IBD dietician. And so I learned
14:59
a lot more about diet and the impact of diet.
15:02
And over the years, I'd heard so much conflicting
15:04
advice on that. At my university, I didn't really
15:10
believe in diet. You go online to these Facebook
15:14
groups or Reddit, and people promise all these
15:17
miracle diets. My family had always been sending
15:19
me these different miracle diets or telling me
15:22
to try CBD or go try acupuncture or go try yoga
15:26
or just other random, more holistic medicine
15:29
alternative treatments, which some of them probably
15:32
do help some people. They just hadn't worked
15:35
for me. And I think I'd written off diet as one
15:37
of those woo -woo treatments that don't actually
15:40
work. Living in Boston with this new provider,
15:43
the dietician, I think, gave me some of the initial
15:45
building blocks. And over time, I still have
15:49
active inflammation, but my symptoms have gone
15:51
down a lot more. And this is the closest I've
15:53
ever felt to remission at this point, where it's
15:56
still humeromethotrexate and then being a lot
16:00
cleaner in what I'm eating. And then the last
16:03
update. is methotrexate's not great. There's
16:08
risks for that and methotrexate toxicity. And
16:12
so three months ago, I started Tremphia, which
16:15
is a newer drug. And the hope is to wean me off
16:19
of the methotrexate and replace that with the
16:21
Tremphia, which could potentially be safer for
16:24
my body. So I'm only a few months in. I'm feeling
16:27
better, but it could be a bit placebo. I think
16:30
it'll take time to... to really see and also
16:33
probably need to do some more like fecal calprotectin
16:36
inflammation testing to see if it's actually
16:38
impacting the underlying disease. Yeah. So long
16:43
journey to get closer to remission, but not quite
16:48
there yet either. How do you keep hope alive
16:53
when it feels like your own body is basically
16:57
constantly working against you? Going back to
17:01
earlier in my journey where I really hated my
17:05
body and fought against it. And then getting
17:08
to a point where you just accept that's how your
17:11
body functions. And giving it more grace when
17:16
you have flare -like episodes. You're having
17:20
more symptoms at a period of time. And moving
17:24
past even just accepting it to having compassion
17:27
for your body. I think... reframed my mindset
17:30
and so when my disease is more active when I'm
17:39
feeling more symptomatic I definitely feel more
17:46
melancholy and maybe a bit more frustrated with
17:50
with my body but the periods where I'm not feeling
17:54
so sick that I can't leave home To me, my Crohn's
18:00
diagnosis becomes something less central to who
18:04
I am. Over the years, I think I've pushed past
18:07
a lot of the barriers or guardrails that other
18:12
people have put on me or constructed around me.
18:16
And I know, I think, what I'm capable of. I guess,
18:21
like, to be more concrete on this, when I was
18:23
in college, I remember my doctor telling me,
18:26
you can't drink. You shouldn't be going to all
18:29
these parties. I really wanted to study abroad.
18:32
You can't study abroad. You really shouldn't
18:34
be traveling at all. My first job out of college,
18:37
I was working a job that was 60 to 80 hours a
18:41
week. My next job out of college after that was
18:44
100 plus hours per week. So very intense. A lot
18:49
of the time, still doctors saying you shouldn't
18:51
be traveling. I love hiking. I love backpacking.
18:54
Going on a seven -day... backpacking camping
18:57
trip not something you should be doing and so
19:00
i think i lumped all of this you shouldn't be
19:05
doing these things into one and just felt like
19:09
i was being constrained by these clinicians and
19:13
by other people and it took a lot of time for
19:17
me to start to parse out and to separate like
19:20
yes there are certain things i shouldn't be doing
19:22
as much of i should not be drinking heavily.
19:26
I should really be conscientious that I'm getting
19:30
eight hours of sleep and I'm getting adequate
19:32
exercise per week. On the other hand, I can travel.
19:36
I can go hike and camp. I'll have to take more
19:38
precautions. I'll have to bring certain types
19:41
of food with me. I'll pack a lot of Imodium.
19:44
I'll pack electrolytes, my Zofran, my wet wipes,
19:48
all of that. And so I think it's a bit of realizing
19:51
there are some things outside of my control.
19:54
That like if I drink alcohol, my body is going
19:56
to react. But there's a lot of things in my control
19:58
that I can learn to deal with. And so the hope
20:01
is, where the hope springs for me is, I'm a lot
20:05
stronger than I give myself credit for at times.
20:10
And I think in general, I love my body and I
20:15
trust my body to be able to do what it can do.
20:23
And so I have... hope through this confidence
20:25
in myself where, yes, there are the uncontrollables,
20:29
but for the controllables, I can take care of
20:30
those. And so I can make the best type of life
20:33
that I can by focusing on those controllable
20:35
factors. Yeah. I think that's a very positive
20:39
approach, especially if you're still dealing
20:44
with active disease. Now, how do you deal with
20:49
fear? in terms of the future right when it comes
20:54
to your Crohn's because you've burned through
20:56
a lot of medications yes you found a GI or medical
21:01
team now that supports you much better than maybe
21:04
the doctors before but yeah how do you deal with
21:09
this thinking which I'm sure you have because
21:11
or at least you've thought of it right like hey
21:13
there's not many many treatments left I still
21:17
haven't really fully achieved remission. What
21:20
is going to happen to me, you know, if my symptoms
21:23
get worse? How do you navigate this sort of fear
21:27
that most people with active IBD still have as
21:30
they sort of, you know, move along in their journey?
21:34
Yeah. I think for me, it's been going back to
21:37
a bit of what's controllable and what's not controllable.
21:40
And so the fact that in the future, I could need
21:45
surgery outside of my control. The fact that
21:49
things could get worse in the future, partially
21:52
in my control. And so that fear, I think I've
21:57
channeled into a more positive way of living
22:00
my life in terms of really holding myself accountable
22:04
to sleep, stress, diet, making sure I take my
22:09
meds, making sure I'm going to all my doctor's
22:11
appointments, getting my labs done, et cetera.
22:14
and staying on top of that. And there are periods
22:19
where that fear spikes. And so when I'm having
22:22
a conversation with my doctor and she's telling
22:25
me, yeah, the inflammation has increased compared
22:30
to your last appointment. If it keeps progressing,
22:32
we'll have to explore a different medication.
22:35
And if there's no other medications left, then
22:37
like surgery and talking through that. I think
22:40
those are, they're more temporal fears. based
22:42
on the condition and how my disease is progressing.
22:45
But I try not to make myself overly anxious or
22:50
to focus on it too much when it's things that
22:53
are outside of my control or things that may
22:55
or may not happen. Yeah, it's a good approach.
22:58
I think it's a very good approach. So you've
23:02
been through a very long Crohn's journey. And
23:06
like you mentioned earlier, you started off really
23:10
not knowing too much about the disease. You went
23:12
through phases of embarrassment, maybe a little
23:15
bit of isolation as well. But then you sort of
23:17
got older. You got wiser. You learned to live
23:21
with the disease in a different way. You sort
23:24
of realized that Crohn's started to change you
23:27
as a person as well. And after speaking to you,
23:32
before we started... the the episode here you
23:36
know we talked about advocacy so i think you've
23:39
also started coming out of your shell a little
23:41
bit and started to share your own journey but
23:44
you've You've gone a little bit beyond just advocating
23:48
or raising awareness because you launched a project
23:52
that's called TryTummy .com. And you can correct
23:56
me if I'm wrong, but if I just sum it up, it's
23:59
sort of an app providing some sort of IBD and
24:03
IBS support. Talk to us a little bit about what
24:07
this is, what it does, and then also what...
24:13
trigger your experience in you to say, hey, let's
24:17
take my experience and do something positive
24:19
with it? I guess I'll start with what triggered
24:21
me, and then I can get into what we're doing
24:24
at Tummy. So my first job out of college, I mentioned
24:27
it was a corporate job. It was an intense workplace
24:32
environment. You're working very late hours every
24:36
single day. And this was also COVID. I graduated
24:40
2020, and so I started this job 2020. And so
24:43
it was very isolating. And I remember my team,
24:48
every night at 7 p .m., we would do like a checkout
24:52
call where you would chat with the team and say
24:55
like what you're going to work on for the rest
24:56
of the night. And you'd also sometimes just chat.
25:00
You would shoot the shit a little bit. And I
25:03
remember one night we were all sharing different
25:06
things about ourselves. And I mentioned some
25:08
of my anxiety about how I was going to manage
25:10
this really intense job. and my health. And so
25:16
from this conversation, they told me that I should
25:17
get involved with this disability support group
25:21
that was at the company. And I think I had reached
25:27
out and maybe didn't get a response or it just
25:30
wasn't very active. And so I decided to start
25:33
a support group within my own office. I was having
25:38
all these conversations with people that also
25:40
had chronic diseases, invisible disabilities,
25:42
visible disabilities, and realizing how similar
25:46
their experience was to mine. And I felt so much
25:48
meaning and purpose in being able to relate and
25:53
help these people. And so I, after that, moved
25:59
to Boston for another job and started to feel
26:03
a sense of ennui, really. settle in where I wasn't
26:06
doing anything meaningful. I didn't feel like
26:07
I was making a positive impact in the world.
26:09
And I still really wanted to do something to
26:11
help the chronic disease population or folks
26:14
in similar situations to myself. And so I decided
26:18
to go back to school in 2024 to pivot into entrepreneurship,
26:24
to start something that would help chronic disease
26:27
patients. And so I spent my first year exploring
26:30
different ideas. Towards the second half of my
26:35
first year, we had one class on operations where
26:39
it was mapping out the process flow of a certain
26:42
task and figuring out where the pain points are
26:45
in that. And so I was like, why don't I just
26:47
map out the process flow of what it's like to
26:49
be a Crohn's patient? And so I mapped out from
26:52
diagnosis to even pre -diagnosis to getting diagnosed
26:58
to getting your treatment to managing flares
27:00
to continuing on. What are all the different
27:02
steps that a typical patient goes through? And
27:05
I identified one point that had been really,
27:09
really painful in my life, which was around diet.
27:12
And that was in figuring out which foods are
27:16
triggering my symptoms and which diet actually
27:18
works for me to feel better. And as I had more
27:22
and more conversations with patients, I realized
27:25
that this wasn't just a me problem. This was
27:27
a problem that a lot of people were having. And
27:29
it inspired us to start building Tummy. And so
27:32
the idea behind Tummy is that we provide personalized,
27:35
actionable insights for what foods and other
27:39
lifestyle factors are triggering people's symptoms.
27:41
The long -term vision is to create something
27:44
holistic so that end -to -end, a patient can
27:46
come on, they can write down what their diagnosis
27:51
is, age, other demographic factors that might
27:55
be relevant, and then... Over time, as we learn
27:58
more about them and their specific condition,
28:01
their specific reactions, we're able to provide
28:03
clearer patterns and insights into what foods
28:06
are specifically triggering them. And as a patient
28:10
myself, I've tried so many different diets. I
28:12
saw a dietician and they give you this food journal
28:15
where you're mainly writing everything down and
28:17
then you're looking through it trying to figure
28:18
out, okay. Was it because I had potatoes this
28:21
one day or was it because I had something fried
28:24
or is it some other ingredient that I'm not even
28:27
realizing? And so really what we're trying to
28:29
do is to simplify that process for the patient
28:31
and to give them more control in their journey
28:33
so that they don't have to worry. They don't
28:35
have to spend as much time writing down, logging
28:38
every single thing and then figuring out the
28:39
patterns. Instead, you can just take out your
28:41
phone, take a picture of what you're eating,
28:43
log when you have symptoms, and then let us on
28:45
the back end use machine learning to figure out
28:48
like specific to you. what is causing your symptoms,
28:51
and what can you change to feel better. That's
28:54
a great initiative. And this is at trytommy .com.
28:58
So people should definitely check that out, especially
29:00
for people. And I really, I agree with you. I
29:02
mean, you yourself sort of brought the aspect
29:05
of nutrition into sort of your disease management,
29:07
and it really seems to be going into that direction
29:09
as well. So this is a really cool project. In
29:15
the spirit of helping people, as we kind of get
29:18
to the end here, Especially as someone who spent
29:22
many, many years sort of looking for a mission
29:25
without too much success, like we discussed,
29:29
what would be your message to folks who are struggling
29:36
with active Crohn's and who are potentially not
29:40
really seeing an end in sight, right? People
29:43
who are also going or jumping from one treatment.
29:46
to another without too much improvement based
29:50
on your own experience with the disease and how
29:52
the disease has changed you. What would you tell
29:54
those people? Number one is community. It is
29:58
so important to have a support system around
30:01
you because Crohn's, colitis, IBD in general
30:06
can be so isolating and it's very easy to self
30:10
-isolate as well. And so making sure that you
30:15
You might not have a ton of energy. You might
30:17
not be able to go out and see people all the
30:19
time, but make some effort, I think, to sustain
30:23
that community and also just be open. I was so
30:26
worried about people seeing me as weaker or less
30:30
capable or less able. But when I shared, hey,
30:34
I'm feeling like really sick today, I'm having
30:37
like these symptoms, people were very accommodating.
30:39
Like people were not like, oh, you're weaker,
30:41
you're less capable. People were like, oh, how
30:43
can I help? What can I do? And so I think learning
30:47
to be okay with relying on others, especially
30:50
when you're an active disease, is so, so important.
30:53
On top of that, there are some darker periods
31:01
where it does feel hopeless. I think it's difficult
31:04
to give generalizations or platitudes of, like,
31:07
you will find a solution or... like you will
31:11
find a cure the thing that works for you because
31:13
it's it's so person to person you might end up
31:15
having to get surgery but I think one thing that
31:20
kept me going was knowing that even during the
31:24
periods where my disease was super active and
31:28
I would feel so so bad every day were the little
31:31
moments of happiness or the little moments of
31:33
beauty that I saw in the world and really savoring
31:36
those things even when I was You know, at the
31:39
deepest, darkest depths of my depression, just
31:42
seeing snow fall. I went to school in Tennessee.
31:46
It never snows there. And seeing, you know, just
31:49
like a white blanket on the ground outside with
31:52
all the snow out there. Or you have a friend
31:55
who comes by and brings you food one day, even
31:57
though you didn't ask, and you realize how kind
31:59
and nice people are. I think just like really
32:02
savoring those small, beautiful little moments
32:05
in your life. um to to push through at least
32:08
some of the darkness is that what you would tell
32:12
your own self as a nine -year -old if you could
32:15
go back in time and and talk to that nine -year
32:18
-old kid yeah it's it's funny because i do a
32:20
lot of advocacy work with the crones and colitis
32:22
foundation as well um so i've spoken since a
32:27
kid spoken at a few events and i do lunch and
32:30
learns and i've helped on a lot of different
32:34
events and last year i was the the mission speaker
32:36
for one of their fundraising events. And I had
32:42
like an ending line of like, what did I wish
32:45
nine -year -old me knew at the time? And I think
32:51
the biggest thing is it's okay to not feel okay.
32:57
And it's okay to be open about that. And I think
33:00
the more that you don't try to carry the burden
33:03
of pain on your own, the easier it becomes to
33:06
share that pain with others and to sustain onwards.
33:09
Honestly, I think that is the perfect word and
33:13
perfect phrasing to end it. I think you've said
33:18
it all. And I want to thank you so much for sharing
33:21
your story and also what you're doing. I hope
33:25
for you that you'll find some peace and that
33:28
at least, you know, even though you haven't...
33:31
reached remission yet that you kind of stay where
33:33
you are now with your combination of therapy
33:36
and also nutrition and um keep advocating and
33:39
and keep doing that that work you know in the
33:41
name of advocacy and ibd awareness uh it's really
33:44
great so thanks so much kyle and uh all the best
33:47
to you yeah thank you so much frank and i really
33:49
love what you're doing with this show and and
33:51
all the other work in the space um i feel like
33:53
visibility is so important and providing community
33:56
and Just hearing other people's stories is so
33:59
transformative. And so thank you so much for
34:01
doing this. And we're going to both keep doing
34:03
that. Great. Thank you, Kyle. That's it for today's
34:08
episode of Colitis Unfiltered. I'm Frank Tabering.
34:11
And if this hit home or hit your gut, do us a
34:14
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34:17
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34:20
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34:23
for more inspiring stories from the bathroom
34:26
floor.