i think about it all the time we've been conditioned
to think about it that is the pattern is even
when you feel good you know it's not gonna last
you know that next medication is gonna fail you
know that even if you eat a bad meal and your
body doesn't like it you're like oh my goodness
am i flaring what have i done to myself why did
i do that right and blame it on all the wrong
things and It is a conditioned response to live
in fear of the next flare, even when you've been
living in remission for a long period of time.
This is Kelly, who got diagnosed with ulcerative
colitis at age 22 in Amarillo, Texas. Like many
IBD patients, Kelly lived a long rollercoaster
experience of failing treatments until she found
one that finally pulled her into remission. Kelly
wasn't just busy navigating colitis in her early
20s. She also juggled marriage and motherhood.
And today, she tells us all about how she managed
to fight her disease while trying to hold on
to a normal life. This is Talking S***, presented
by Colitis Unfiltered. My name is Frank Tabering,
and Kelly, welcome to the show. I am so happy
to be here. Thanks for having me. Thank you so
much for taking your time. to talk to me a little
bit about your IBD journey. So I'd say let's
get straight into it. I want to start off by
setting the context, right, so that our audience
kind of knows your story a little bit and then
we'll dive a little bit deeper. Tell me a little
bit about your journey from diagnosis to where
you are today. It has been such a roller coaster,
such a roller coaster. Yeah, like you mentioned,
I was 22 years old. So just getting used to life,
newly married. I had a one -year -old son and
I had left him home for the first time ever.
And I was off at this conference and I had this...
insane level of excruciating pain. It just wore
me out, just brought me to the floor. And that
was terrifying. What I hadn't been telling people
for months and months and months is that I was
rectally bleeding and my 22 -year -old self was
humiliated and embarrassed by that. And I was
just really hoping and praying that it would
just go away. That's how naive I was at the time
and just hoping that it would disappear. But
then that pain hit and it broke me, ended up
going to the emergency room. The emergency room
nurses were convinced that I must have had like
some STD or something, which was so wrong and
so humiliating for them to approach my symptoms
in that way. Just, it's just appalling when I
look back at it. Sent me to go see my OBGYN.
He's the one who referred me to a gastroenterologist.
So, yeah, from there, then had the colonoscopy,
talked about the bleeding that I was hiding and
couldn't hide any longer, the pain that kicked
in. And then first colonoscopy, I was diagnosed
with moderate to severe ulcerative colitis. So
that was the jumping point from there. You often
hear about misdiagnosis and doctors really taking
a lot of time to figure out that it is IBD. And
STD, that's a first for me. I got to tell you.
It was so embarrassing and just devaluing, right,
to be addressed in that way. Yeah, yeah. But
luckily you found a specialist to diagnose you
properly, ulcerative colitis. So going back.
At age 22, I mean, you've sort of completed your
teenage years, but you were still young. Hearing
the words ulcerative colitis come out of somebody
else's mouth, did that mean anything to you back
then? Have you heard about it? And also, how
did you react mentally to getting these news?
And did your doctor actually fill you on on what
this disease is and what that means for you,
for your life, for the future? As best as I can
remember, you know, it's been a little while,
but no, I had never even heard those words before.
I didn't know anything about inflammatory bowel
disease. I remember just feeling. a little lost,
right? I had been experiencing these symptoms.
So much of my life had changed, right? New marriage,
new baby, all of these things. Was it connected
to my pregnancy? I didn't know if that was something
to do with it. And I just didn't know anything.
No, I don't feel like my physician really gave
me a good understanding of what it was, what
to expect, what this meant for my future. And
it was a lot of like asking a lot of questions
during follow -up appointments, trying to piece
it together to figure out what it really meant
over time. So how did you then navigate life
after diagnosis, both physically and mentally?
And maybe also take us through the different
treatments that your doctor puts you on to manage
or try to manage your colitis. Right. We started
with Azacol, so misalamine at the very beginning.
I physically and mentally, I cried a lot. It
was overwhelming. And there were a whirlwind
of emotions over the first couple of years throughout
the whole thing, really. I think there was a
lot of fear, a lot of fear of the unknown. And
I hoped that, okay, well, I'm going to take this
medication and the medication is going to help.
And that's just what I'm going to have to do.
And so that was the first approach was kind of
trusting the doctors to give me the answers because
I didn't know. And, you know, so then. I was
taking the Azacol and then that wasn't enough.
Symptoms would keep coming. So then we'd have
to increase the dosage and increase the dosage.
And that was a struggle for me to just continuing
to put more and more and more medication in my
body. And it wasn't. quite working. That was
really hard to wrap my head around. How do I
trust that this is what I'm going to be relying
on, but then it's not working. And so wrapping
your head around those failed medications kind
of, it doesn't make me not trust the physician,
but the process, I wasn't trusting the process
of how am I supposed to heal. I have been on
so many different medications. I've done, I'm
probably forgetting some, but all the different
versions of mesalamine, all of the, the symphony
and Humira and Antivio, and I'm on Zelljans now
with combination therapy with Aprizo, which is
a version of mesalamine. And I know I've done
plenty other multiple rounds of prednisone, steroids,
Euceris when I didn't want to take prednisone.
And I'm sure there's more that I am forgetting.
But it has been a constant rollercoaster of failed
medication and increasing the dosage until you
max out at that dose. And then you have to start
over with something new. And all the time that
it takes to even see if that medication is going
to work in the first place. It's rough. Absolutely.
Azacol, yeah, I know it very well. Even Euceris,
that's something that you don't always hear,
but I had a small relapse once a couple of years
after I achieved remission and Euceris helped
me at that stage. But wow, yeah, so you've sort
of really done the A to Z almost of the different
tiers of medications that we typically see in
IBD treatments. So you were newly married, you
had a child. How did you manage that part of
your life while at the same time navigating the
disease, going through flaring, trying these
medications? I mean, dealing with diabetes is
one thing that takes a lot of energy. And I always
say, you know, when we're flaring, that's about
all the energy we have, right? But great. You
have a husband. I'm sure he was supportive. But
having a child at such a young age, how did you
manage that? How did you navigate life as a mother?
That is such a big question. Yes, I was blessed
to have a husband who could provide. And, you
know, so I was lucky enough to stay at home with
my son. I tried over time to do a couple things
to try to contribute to the home and finances
and things. But I was blessed to be able to stay
at home and work on my health and being a mother.
I felt often like a disappointment. to to my
family um my son was young and so I could be
on the floor and play with him and and that was
a check mark a good thing you know as he got
older then It got harder with wanting to go do
things and go to events and go outside of the
house and be around other people and all of the
social opportunities that mothers can have to
connect. But I was overwhelmed and intimidated
by some of those things. And so there was definitely
a mom guilt for limited. bad experiences with
my son or, oh my goodness, the times of being
out somewhere and then having to rush to the
bathroom, the urgency, and then you have to haul
your kid with you and try to make it. Just the
stress level of trying to manage was so high
that it was very easy to avoid situations like
that. I have a great relationship with my son.
I was with him, right? In the long term, It was
fine. He didn't know what he was missing out
on. You know, it was just my guilt for not being
able to be the version of mom that I wanted to
be or thought I needed to be. But he got lots
of attention and care and we were at home together
plenty. And so he was a driver for me to just
keep going. Luckily, I had him and it was a motivation
to. Keep waking up every morning and keep trying
and keep trying to improve my health and those
sorts of things. So that mom role really saved
me in a lot of ways, honestly. So that's very
interesting because lots of times when we're
flaring, we just kind of want to be by ourselves,
right? And this ties to this isolation that a
lot of us experience when we're flaring because
the pain is so strong that this is all we want
to deal with. Did you ever feel this desire to
basically be by yourself for an extended period
of time, to basically suffer in silence? Because
yes, you had your husband as a support system,
but then again, you had a son who was very young.
And so even though you embraced this motherhood
at that stage, as you just said, did you have
those moments where you just thought, man, I
just wish I could suffer in silence, and I really
don't want to be around anybody? I would say
it became a part of how I cope with life now.
I still have a tendency to just want to shelter
and isolate when big overwhelming things happen
because it's a pattern. It's a learned pattern
over time of whether it's fueled by, I don't
want people to see me suffering or I don't want
to be a burden on other people. I think that's
some of that underlying. mental narrative behind
that isolation, also embarrassment of the fact
that I'm feeling what I'm feeling, but just that
external stimulation. My body is taking all of
my focus, all of my energy. One more person that
I need to focus on outside of myself sometimes
is just too much. So yes, absolutely. Can I just
lay in my bed in pain, in tears, being angry
with the fact that I feel this way right now?
100%. That definitely happened. Yes. So you mentioned
your body. And my next question is then, how
did you keep hope alive when you knew that your
body was basically working overtime against you,
right? As you were navigating different treatments
and setbacks? Yeah. And it's this betrayal, right?
When your own body betrays you, and then you
can't even trust your own body to keep up with
you. As a person, I really struggled. Mentally,
I really struggled. I went through some very
dark and angry and bitter times because of the
comparisons I saw between me and all the normal
people. And what was the question? I'm so distracted
by thinking about those times. What did you ask?
I just would like to know. what you did or what
your thought process was to keep this hope alive
when you knew that your body was you know yeah
really betraying you right yes i don't think
i had hope for a very very long time though there
was no keeping hope alive it was just keeping
me alive was was the focus for a long time again
i had my son so there was a reason to continue
to exist and and i How did I keep hope alive?
I think it became more of a, how do I just keep
functioning in a way that can just keep up with
life? I didn't have hope for anything better.
I didn't have hope for healing. I saw my UC journey
as, I'm just going to continue going through
these. patterns and these cycles, and I'm just
gonna have to deal with it. That was how I felt
for the longest time. Just accept your new normal,
right? It really... I had to hit some really,
really dark and low points before I got to the
space where I was like, I can't do this. I can't
be this way anymore. I have to make changes.
I have to figure out how to take care of my health.
I need to figure out what I can do to somehow
generate my own hope, right? How to find that.
And so really over time, I started learning more
about... taking care of my health. And I took
a nutrition course. I was trying to go back to
school, trying to do something with myself. I
wanted to feel valuable in society because I
didn't. And so I was going back to school. I
took a nutrition course just to learn about taking
better care of my health and fell in love. I
was fascinated by that. Another core memory,
I had gained a ton of weight on prednisone and
I just, I hated myself after that. And I just
really struggled mentally. And so I was like,
well, maybe exercise. Maybe I can lose the weight.
Maybe I'll start exercising. And I kind of felt
like maybe that was going to be the hope. If
I could find a way for my body to get a little
stronger, then maybe that would... give me a
better capacity to live life and... I remember
I was like, okay, well, the only way I know how
to exercise is to go running, right? I think
that's like, that's how you exercise is you go
running. And, and so I was like, I'm going to
run from one mailbox to the next mailbox. Like
that was my goal for like a week, just one mailbox
to next, just get outside. I mean, you can't
go that far anyway, when you're flaring anyway.
And so just get outside and go from one mailbox
to the next. And then I could go to, I could
run from one mailbox to two mailboxes and then
three. And so it was slowly like, That started
sparking something within me of like, oh, I can
achieve little goals and I can take care of myself
and and grow in that way. And I still hate running.
I can run past a couple of mailboxes now, but
eventually, eventually worked into like group
exercise classes. And I just love that. And so
physical activity was really transformative to.
my sense of ability to do something, you know,
and that grew over time, definitely easier said
than done. But I think that was a turning point
in my life of just desperately needing something
to change and trying to do something very, very
small gave me some hope, achieving those little
things afterwards. Yeah. Yes, so it's not just
treatments, but lifestyle changes as well, at
least to help with sort of like the mental load
that you have sitting on your shoulders. So that's
really great. Now, jumping to today, how are
you feeling? I hesitate to answer this question
because I used to be so resentful against the
people who were living well. I'd be like, oh,
yeah, that's not real. Or they must have really
mild conditions. Or they're just in a short -term
phase where it's going well. That doesn't exist.
And so the fact that I can literally say, man,
I am healthier than I've ever been. I like myself
in a way that I haven't before. I feel like I'm
doing something with my life that's meaningful.
And I've had opportunities. I do competitive
jujitsu. I fight. I am so much better. And my
UC has been in remission for a handful of years.
And I'm constantly paying attention to making
sure I keep it that way. And it's a transformation
that I get to live now through so much hell and
so much work and effort. But I'm great. And I
know what a luxury that is. I know how valuable
that is. I have been at the worst where I'm weak
and useless and just broken. And so even just
feeling happy is what a blessing. And you just
said it, you've been in remission for a couple
of years. We all know that remission is not a
cure. So we definitely don't take it for granted.
We hope that it's going to last forever. But
how do you deal with, and maybe you don't, but
I think most of IBDers, they kind of do. How
do you deal with this fear that your remission
time might be limited, that the next flare could
just be around the corner? Is that something
that you think about? And then when you do think
about it, how do you handle it? I think about
it all the time. We've been conditioned to think
about it. That is the pattern, is even when you
feel good, you know it's not going to last. You
know that next medication is going to fail. You
know that even if you eat a bad meal and your
body doesn't like it, you're like, oh my goodness,
am I flaring? What have I done to myself? Why
did I do that, right? And blame it on all the
wrong things. It is a conditioned response to
live in fear of the next flare, even when you've
been living in remission for a long period of
time. I think about it all the time. I still
get nervous. I genuinely have learned to pay
really close attention to my body and kind of
the natural signals that it warns me of. You
know, something will shift or something will
feel off. I can feel inflammation rising in my
body and the panic. I need to make sure that
this is my priority. I need to reset my life,
make sure that I'm stable. I could just keep
spinning on that topic. But that fear is so real.
It will never go away. And how do I deal with
it? I pay attention to that fear on a daily basis.
And I make active choices to acknowledge that
fear and make decisions on how I live my life
to prevent future flares. I will also say that
I've been doing this long enough to where there
is a new belief in me that a flare is temporary.
I think that's a helpful thing too after you've
gone through it long enough that at least understanding,
wow, my body is really overwhelmed right now.
Inflammation's going crazy, right? Something
needs to shift, but it can. And there is a down
after the height of intensity of disease activity.
So I think that helps too to lessen the fear
just a little bit when you start to believe that
flares can be temporary. And it's perfectly fine
to be fearful. I always say that we are not oversensitive.
We are not over emotional about our disease.
We live through this hell. There's a reason why
we have this fear. And I don't think that we
should apologize for this fear either, right?
Even when we're in remission, and it doesn't
matter if we're in remission five years or 10
years, because we do know that remission could
end just like that, right? So I actually I'm
one of these people that say like we should sort
of try and learn to almost embrace this fear
because yes, it keeps us in check, you know,
and like you just mentioned, you know, it brings
about changes in your lifestyle, changes for
your body, lifestyle changes for your mental
state. So if you look back now, this entire journey
from age 22 until now, in what ways do you think
that colitis has changed you as a person? So
many ways. There's a positive and a negative
answer to that. I'll start with the negative
because ending on positive is always better,
but it was trauma. It's a real life trauma, right?
And so mentally and emotionally, it changes the
way that you see yourself and your own self -concept.
It changes. your view on life and priorities
and values, there's a lot of grief and loss associated.
So it has definitely added that need for healing
in my life. At the same time, man, I feel like
I have a level of compassion for other people
that I probably would never have had before.
that, like, private hidden hurt within others
that everybody carries. And I'm grateful for
that, right? It gives opportunities for deep
and meaningful connection with others, which
is fueling and healing. But it's also forced
me to become a better version of myself, right?
It's forced me to learn a lot, right? I've learned
and gained so many things and I've had experiences
that have forced me to self -reflect in different
ways and take care of myself in different ways
and learn about, I mean, it changes everything.
Your relationships and your activities and your
hopes and your goals, how does it influence my
life? It's changed it. drastically it took away
my life everything i expected my life to be and
then forced me to rebuild a new one and luckily
that fight has rebuilt one that i i never could
have imagined otherwise yeah so speaking of other
people I am currently doing a regimen of physiotherapy.
And so you talk with your therapist and naturally
we landed on the topic of IBD and I mentioned
colitis. And he looked at me and said, oh, what
is that? And so I thought like, oh, here we go.
All right, here I go into my spiel of like explaining
what it is, try and keep it concise, right? I'm
curious to hear from you how you explain colitis
and what you're going through IBD to people who've
never heard of it when you face that. I'm, this
might be comedic, but I feel like there's got
to be a little flare of dramatic for people to
even comprehend how intense it is. And so I will
always say something along the lines of, well,
it's an autoimmune illness, meaning my body's
immune system sees my colon as a foreign object
and just mounts an attack. So my body is basically
attacking itself from the inside out. So then
I have these open wounds, these ulcerations in
my colon that just bleed. And that's ulcerative
colitis. I like it. It is. It is. Your body's
killing you from the inside out. Exactly, exactly.
And then sometimes you're like, oh, wow, you
know, really? It's like, yeah, it's really that
dramatic. There's no other, there's really no
better way of saying it, you know, except that
you could say, well, I'm constantly running to
the toilet and I have to be careful that I don't
shit myself. Yeah, I like that explanation. Rushing
to just crap blood. Like that's, yes. So you
had a... Very strong support system you mentioned
through, you know, via your husband. Your son
was maybe a little bit too young at the time
to support you. But in a way, like you explained
to us, he did support you, right? He gave you
sort of this support system. But being around
somebody, again, your husband who really was
there for you, what kind of advice, what kind
of message do you have for people who are living?
close to someone with colitis, who are living
with someone who has colitis, who are living
with someone who got recently diagnosed, who
is struggling. What's your message to those people?
What's your advice to those people? The relationships
in a marriage with a chronic illness are difficult.
Yes, my ex -husband was doing the best that he
could to be supportive. But there's still a limitation
of understanding. And there's a... there's a
pressure, right? Not only that I was fully aware
that this isn't really what he signed up for
when he married me, right? And so I carried a
lot of that burden and disappointment, feelings
of disappointment, not that he made me feel that
way, but I felt it. But it also shifted his life
into being more of a kind of a caretaker, right?
Like paying attention to how I was feeling and
having to navigate my frustrations and emotional
roller coasters. And so, yes, he did his best
to be supportive, but it is not easy for either
partner in a relationship when you're doing that.
And so that can be hard. I think when I say this
next part, it's not directly tied at him, not
at all, but in general for those supporting,
right? Family and friends supporting others.
I think I just tell them to believe. their UC
friend. Like, just believe them. Believe them
when they're exhausted. Believe them when the
fatigue is taking over. Believe them when they
tell you that they just don't feel well. To actually
honor that and trust that when they're actually
vocalizing that out loud, that's when it's real.
Because most of us aren't even going to say it
in the first place. But, right? When we're saying
it out loud and being like, I really, I'm, you
know, setting those boundaries. Allow people
to set their boundaries, respect those, bring
joy and light and hope, spend time with them.
Even that means like playing a card game on the
couch together, right? Just allow yourself to
adapt to their needs, believe them when they're
talking about how trashy they feel and let them
know that they're still very much loved and valued
despite the fact that they are not living in
the way we all expect to be living. Very well
said. I like that approach. So now we talked
about others. Let's shift it back to you. Looking
back, do you have any regrets, any guilt about
anything, how you handled the disease, how you
navigated it? I wish I could have learned faster.
I wish I could have avoided a lot of suffering,
right? I mean, that's just part of life's journey
is slow growth and development and learning.
I wish I could have. told myself then everything
I know now, that would have been great. But I
wish I would have been kinder to myself, I think.
You know, I just told you that others need to
believe us when we feel sick. I should have given
myself that same grace more often. I should have
allowed myself to trust that when my body felt
like trash, that I needed... to not feel guilty
about that. I don't know why I felt so ashamed
and so guilty and so embarrassed instead of just
being kind and accepting and giving myself permission
to be different and to take care of myself and
live in a different way than others. So much
easier said than done, but man, that would have
reduced a lot of suffering to be able to just
have nicer narratives in my head throughout the
whole experience, for sure. And then let's not
forget to not wait for months ignoring symptoms,
especially any sort of bleeding, you know, from
the rectal area, right? Minor detail, don't bleed
for months and not tell anyone. Yes, yes. Actually,
that's a really good point because I... I kind
of continued that pattern. I hated letting anyone
know that I was sick. I really refused to talk
about it for the longest time, longest time.
I still get uncomfortable sometimes admitting
it. And I just had this sense of pride that I
didn't want people to know I was sick and struggling.
I didn't want to be seen as weak. I didn't want
to be seen as sick. I didn't want extra treatment,
extra attention, or like those, oh, tilted head
responses, you know? And And so I genuinely fought
to hide it and just function, right? Function
out around the world and then just come home
and crash. That was not healthy for me. I did
not allow myself to build an extensive support
system because I was so ashamed of what I was
experiencing. That is also a regret of being
so self -isolating physically and emotionally.
So that's really perfect because now you've touched
on what I'm going to talk to you next, and that
is sort of like being open about the disease.
And you just mentioned you sort of kept it to
yourself and you were not really open about it.
I want to ask you what happened that you changed
that direction, right? Going from sort of being
embarrassed about it, not wanting to mention
anything, to being more open about it. The reason
why I ask you this is because you are quite outspoken
about it, especially on social media, you know,
TikTok. This is one of the ways that we actually
connect it, right? And I've seen your stuff and
you seem to have absolutely no fear to, you know,
put the camera in your face and to talk about
colitis. So what brought that about? And at what
point sort of did you have this epiphany of like,
hey, let's... Let's switch to being actually
open about this and talking about it and trying
to raise awareness. Was it a singular event that
sort of flipped the switch or was it sort of
a gradual opening, if we can call it that? That's
a great question. Yes, there's a singular event.
I will also say that I'm more comfortable telling
my story and social media allows for this. to
people who I know relate to it, right? So it's
a lot easier when we're building a community
with one another. And if I'm sharing things virtually,
I'm speaking to the person that I know understands
and is living with the same kind of suffering,
right? It's so much easier to connect on that
level. I still get very insecure about people
who kind of know me. listening in on those things,
which is, again, this learned response over time
of trying to isolate. And I don't, I'm excited
for that to shift and change even more over time.
But what did change for me, I had the opportunity
eventually to end up getting my PhD. So I went
into a PhD program that focused on health promotion
and health behavior and health education. And
so within my PhD program, it was very research
-based. So I did my dissertation and I'm creating
a... research project from scratch that took
me multiple years. And it's the big question
of, okay, what topics do I want to address? What
do I want my focus to be? I knew deep down inside
that ulcerative colitis is... I mean, the whole
point of me gaining my education over time was
just to learn more about how to take care of
my own health and understand it in a bigger,
broader context. So I knew that my education
was focused on understanding self -management
of inflammatory bowel disease. But making a decision
to do a dissertation on ulcerative colitis meant
that I had to tell all of my mentors and anyone
who was listening and anyone who was publishing
that I had ulcerative colitis. And that was terrifying
for me. I don't even, I wish I could understand
more why it was so terrifying. But again, it
was just this, I don't want to be labeled in
a certain way. I don't know. And so it delayed
me. Because I knew what kind of work I wanted
to do, but I was so intimidated by implying to
the world now that what I live and breathe is
ulcerative colitis. So finally getting to that
point of realizing that my life is going to have
purpose if I use my experiences to benefit the
lives of others. Like that's what I have to hold
on to. And so as I worked on that dissertation,
first finally being like, okay, this is the topic.
My PhD mentor was like, well, you don't have
to tell people you have UC. You can just work
on the topic. And I was like, it's not the same
if I just talk from a general space. I'm in this.
I need to own this. But I had the opportunity
to go into the homes of multiple different ulcerative
colitis patients and speak to them one -on -one
about their stories and how they were navigating
the process. And it was so... healing for me
personally to connect with other people's stories
and to connect with others who understood what
I had lived through as well and share that. And
so I very quickly learned that the more I'm authentic
to myself and what I've experienced and what
I... what I value most because of these life
experiences I mean it has shaped who I am why
would I not own who I am now because of my experiences
so the more I tried to be more authentic to myself
and realize that I wasn't alone and that there
were a lot of other people dealing with this
that healing moment allowed me to give myself
more permission to open up And really take ownership
of this has been so much of my life. It has shaped
who I am today in so many ways. I have to include
it as part of who I am. I have to. And you don't
stop there because you are on a quest to help
people, right? Help people with IBD, with colitis.
And you do coaching as well. Talk to me a little
bit about this initiative, what it is that you're
doing, why you want to do that and how this is
done. how people can reach you even. Yes, thank
you. So as I was working on this research, I
would have the opportunity to go to medical research
conferences, Crohn's and Colitis Congress, things
like that, where I was interacting with the other
big thought leaders, the physicians, and the
research that's being done. And it was just so
evident to me that no one is filling the space.
outside of the physician's office, right? And
so you go, you have your doctor's appointment,
and they help diagnose and check where you are
and make adjustments to your meds. And they spend
10, 15 minutes with you. And then you move along.
And then you go home. And you have the daily
burden of living with, you see, the mental and
emotional, the social burden, trying to figure
out diet, trying to figure out how to get your
health back under control. And there's just,
especially at the time I was in where this was
just becoming more and more evident to me, there's
not a lot of support or resources or provision
of care that's truly addressing that comprehensive
approach. All of the pieces of the puzzle that
are living with you see. And there have been
a lot of strides in the field to fill that gap.
But that's where I belong. I knew that that's
where I belonged because not only did I have
my own story, but I had this educational background
that was really filled with lifestyle interventions
and health behavior and the psychological process
that works through that. And so I ended up pivoting
out of the research world, had some great opportunities,
learned a ton. But I knew that instead of just
running research that would get published, that
maybe would inform some physicians, maybe hopefully
some policies. I just wanted to connect with
the people. I knew that that's where I belonged
is to actually using my life experiences and
everything I learned professionally, personally,
to make a difference in the struggle, that daily
struggle. So yeah, now I've pivoted out of that
world and then moved into that one -on -one mentorship
and working with individuals who... I did this...
alone, right? For so long. So many of us are
doing this alone. I had to teach myself there's
so much trial and error that comes through and
so many mixed messages. And how do you discern
what's true, what's not true, what's useful,
what's not useful, right? It's just so messy
trying to wrap your head around how to truly...
get your life back on track. And that's my purpose,
is to work directly with individuals who can
benefit from everything that I've learned and
genuine compassion, genuine understanding, genuine
care, and a genuine partnership to run the journey
together instead of alone. That is my goal, is
to provide that comprehensive picture and that
connection and support. So I try my best to offer
as much as I can to help support everyone. And
then when people want that one -on -one connection
and additional, I don't want to say hand -holding
because I don't do everything for you, right?
It's everyone's individual journey. But that
connection and that support, that one -on -one
mentorship there, that's what I do. And that's
really a great initiative and really seems to,
like you said, to be filling a certain void that
not many IBD patients even thought about, really.
And I think it's really great. We're going to
for sure put your contact info in the show notes
as well so that people listening can reach out
to you at their leisure. So, Kelly, as we sort
of come to a close, I have two more questions
for you. I want to take a quick trip back into
the past and then we'll take a quick trip into
the future. Based on everything that we talked
about today, based on your entire journey, if
you could speak to yourself back at age 22 on
the day you got diagnosed, what would you tell
yourself? I'd probably hug her first. I would
probably hug her and hold on to her for a long
time. Cry with her, probably. I'll try to keep
my emotions at bay. I think I would tell her
that that diagnosis and all of the hell that
was coming in the future would build, if she
fought really hard, would build a strength and
resiliency that she couldn't even imagine could
exist, right? That there would be this capacity
to do and think and see. in the world that only
that level of hell can generate. And to fight,
to start learning how to take care of your physical
and emotional health as fast as possible right
away. And, you know, that paying attention to
what you eat and how much you move and that nervous
system regulation and your mental health and
your sleep, all the things, all the pieces, I
would have given her all that information. But
there is hope, right? There is hope for that
self -development. And hard things, it's like
diamonds, right? A lot of pressure and a lot
of hard has the capacity to create something
beautiful and a much more pure, authentic version
of you. And I wouldn't be who I am today without
what I've experienced, for sure. A message of
power, a message of strength, a message of hope,
a message of self -care as well. So I think that
really sums up what dealing with this disease
is. So you mentioned it earlier, it's always
great to end up with hope or the positive, you
said. Looking ahead, and this might be a tough
question to answer, but I'm sure you have some
sense of hope at least for it. Do you think that
we will see a cure to IBD in our lifetime? Oh,
I would love to end on a hopeful note. Shoot,
that's, you know, I have thought about this a
ton. I think there's two answers to that question.
And it depends on what you count as cure, because
I think there are amazing medical strides happening,
right? The science is getting much better at
developing effective treatments. for UC. So I
think that the medical care will improve and
the stigma will reduce and the openness and the
connections will improve. I think all of that
is headed in a good direction. At the same time,
our society, the pressures of our lives, autoimmune
illnesses are not going away. And the root cause
of chronic inflammatory illnesses is inflammation.
And that is coming from the air that we breathe
and the things that we tell ourselves and the
things that we ingest into our bodies, the experiences
we have, the trauma that we hold. Life is just
getting so much harder as time goes on and that
affects our bodies and our bodies can't keep
up with the world around us right now in the
best way because We shouldn't be able to keep
up with all of that. So I think that the pressure
of real life is getting stronger, which is going
to lead to more autoimmune illnesses within ourselves
and within the population. And so I think it
will be harder and harder to manage UC if we
continue to match the world around us and lifestyles
like that. So do I think there will be a cure
in our lifetime? No. But is there hope for a
better quality of life and genuine thriving?
Yes. Yes, I do. Pragmatic down to earth with
a little bit of hope as well. So I'm not even
going to further elaborate because I really think
that you summed it up in a very good solid way.
Kelly. Thanks so much for taking the time to
talk with me today. It was really a pleasure
for me to talk about your colitis journey and
IBD in general. For you, I wish you nothing but
the best and continuing remission. And thank
you also for what you're doing and keep speaking
out and keep helping people. I think sense of
community is really what we need in IBD, Crohn's
and colitis. So keep doing that and all the best
to you. Thank you so much again for being here
today. Thank you. You too. Absolutely. That's
it for today's episode of Talking S***, presented
by Colitis Unfiltered. I'm Frank Tabering, and
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