Latest / Crohn's & Colitis Unfiltered / Motherhood, IBD and PhD: Kelli’s long road to remission

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Motherhood, IBD and PhD: Kelli’s long road to remission · Crohn's & Colitis Unfiltered

0:02
i think about it all the time we've been conditioned
0:05
to think about it that is the pattern is even
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when you feel good you know it's not gonna last
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you know that next medication is gonna fail you
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know that even if you eat a bad meal and your
0:16
body doesn't like it you're like oh my goodness
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am i flaring what have i done to myself why did
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i do that right and blame it on all the wrong
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things and It is a conditioned response to live
0:27
in fear of the next flare, even when you've been
0:31
living in remission for a long period of time.
0:34
This is Kelly, who got diagnosed with ulcerative
0:37
colitis at age 22 in Amarillo, Texas. Like many
0:40
IBD patients, Kelly lived a long rollercoaster
0:43
experience of failing treatments until she found
0:46
one that finally pulled her into remission. Kelly
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wasn't just busy navigating colitis in her early
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20s. She also juggled marriage and motherhood.
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And today, she tells us all about how she managed
0:59
to fight her disease while trying to hold on
1:01
to a normal life. This is Talking S***, presented
1:05
by Colitis Unfiltered. My name is Frank Tabering,
1:08
and Kelly, welcome to the show. I am so happy
1:11
to be here. Thanks for having me. Thank you so
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much for taking your time. to talk to me a little
1:16
bit about your IBD journey. So I'd say let's
1:19
get straight into it. I want to start off by
1:21
setting the context, right, so that our audience
1:23
kind of knows your story a little bit and then
1:25
we'll dive a little bit deeper. Tell me a little
1:27
bit about your journey from diagnosis to where
1:31
you are today. It has been such a roller coaster,
1:35
such a roller coaster. Yeah, like you mentioned,
1:39
I was 22 years old. So just getting used to life,
1:42
newly married. I had a one -year -old son and
1:47
I had left him home for the first time ever.
1:52
And I was off at this conference and I had this...
1:58
insane level of excruciating pain. It just wore
2:03
me out, just brought me to the floor. And that
2:06
was terrifying. What I hadn't been telling people
2:10
for months and months and months is that I was
2:12
rectally bleeding and my 22 -year -old self was
2:17
humiliated and embarrassed by that. And I was
2:20
just really hoping and praying that it would
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just go away. That's how naive I was at the time
2:27
and just hoping that it would disappear. But
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then that pain hit and it broke me, ended up
2:33
going to the emergency room. The emergency room
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nurses were convinced that I must have had like
2:40
some STD or something, which was so wrong and
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so humiliating for them to approach my symptoms
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in that way. Just, it's just appalling when I
2:52
look back at it. Sent me to go see my OBGYN.
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He's the one who referred me to a gastroenterologist.
3:00
So, yeah, from there, then had the colonoscopy,
3:03
talked about the bleeding that I was hiding and
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couldn't hide any longer, the pain that kicked
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in. And then first colonoscopy, I was diagnosed
3:12
with moderate to severe ulcerative colitis. So
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that was the jumping point from there. You often
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hear about misdiagnosis and doctors really taking
3:24
a lot of time to figure out that it is IBD. And
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STD, that's a first for me. I got to tell you.
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It was so embarrassing and just devaluing, right,
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to be addressed in that way. Yeah, yeah. But
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luckily you found a specialist to diagnose you
3:43
properly, ulcerative colitis. So going back.
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At age 22, I mean, you've sort of completed your
3:50
teenage years, but you were still young. Hearing
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the words ulcerative colitis come out of somebody
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else's mouth, did that mean anything to you back
3:57
then? Have you heard about it? And also, how
4:00
did you react mentally to getting these news?
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And did your doctor actually fill you on on what
4:06
this disease is and what that means for you,
4:09
for your life, for the future? As best as I can
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remember, you know, it's been a little while,
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but no, I had never even heard those words before.
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I didn't know anything about inflammatory bowel
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disease. I remember just feeling. a little lost,
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right? I had been experiencing these symptoms.
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So much of my life had changed, right? New marriage,
4:32
new baby, all of these things. Was it connected
4:34
to my pregnancy? I didn't know if that was something
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to do with it. And I just didn't know anything.
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No, I don't feel like my physician really gave
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me a good understanding of what it was, what
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to expect, what this meant for my future. And
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it was a lot of like asking a lot of questions
4:56
during follow -up appointments, trying to piece
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it together to figure out what it really meant
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over time. So how did you then navigate life
5:07
after diagnosis, both physically and mentally?
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And maybe also take us through the different
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treatments that your doctor puts you on to manage
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or try to manage your colitis. Right. We started
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with Azacol, so misalamine at the very beginning.
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I physically and mentally, I cried a lot. It
5:30
was overwhelming. And there were a whirlwind
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of emotions over the first couple of years throughout
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the whole thing, really. I think there was a
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lot of fear, a lot of fear of the unknown. And
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I hoped that, okay, well, I'm going to take this
5:50
medication and the medication is going to help.
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And that's just what I'm going to have to do.
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And so that was the first approach was kind of
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trusting the doctors to give me the answers because
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I didn't know. And, you know, so then. I was
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taking the Azacol and then that wasn't enough.
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Symptoms would keep coming. So then we'd have
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to increase the dosage and increase the dosage.
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And that was a struggle for me to just continuing
6:16
to put more and more and more medication in my
6:19
body. And it wasn't. quite working. That was
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really hard to wrap my head around. How do I
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trust that this is what I'm going to be relying
6:29
on, but then it's not working. And so wrapping
6:32
your head around those failed medications kind
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of, it doesn't make me not trust the physician,
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but the process, I wasn't trusting the process
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of how am I supposed to heal. I have been on
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so many different medications. I've done, I'm
6:51
probably forgetting some, but all the different
6:53
versions of mesalamine, all of the, the symphony
6:57
and Humira and Antivio, and I'm on Zelljans now
7:01
with combination therapy with Aprizo, which is
7:05
a version of mesalamine. And I know I've done
7:09
plenty other multiple rounds of prednisone, steroids,
7:13
Euceris when I didn't want to take prednisone.
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And I'm sure there's more that I am forgetting.
7:18
But it has been a constant rollercoaster of failed
7:21
medication and increasing the dosage until you
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max out at that dose. And then you have to start
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over with something new. And all the time that
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it takes to even see if that medication is going
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to work in the first place. It's rough. Absolutely.
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Azacol, yeah, I know it very well. Even Euceris,
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that's something that you don't always hear,
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but I had a small relapse once a couple of years
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after I achieved remission and Euceris helped
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me at that stage. But wow, yeah, so you've sort
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of really done the A to Z almost of the different
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tiers of medications that we typically see in
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IBD treatments. So you were newly married, you
8:01
had a child. How did you manage that part of
8:05
your life while at the same time navigating the
8:07
disease, going through flaring, trying these
8:11
medications? I mean, dealing with diabetes is
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one thing that takes a lot of energy. And I always
8:15
say, you know, when we're flaring, that's about
8:17
all the energy we have, right? But great. You
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have a husband. I'm sure he was supportive. But
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having a child at such a young age, how did you
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manage that? How did you navigate life as a mother?
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That is such a big question. Yes, I was blessed
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to have a husband who could provide. And, you
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know, so I was lucky enough to stay at home with
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my son. I tried over time to do a couple things
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to try to contribute to the home and finances
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and things. But I was blessed to be able to stay
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at home and work on my health and being a mother.
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I felt often like a disappointment. to to my
9:03
family um my son was young and so I could be
9:09
on the floor and play with him and and that was
9:12
a check mark a good thing you know as he got
9:15
older then It got harder with wanting to go do
9:19
things and go to events and go outside of the
9:23
house and be around other people and all of the
9:26
social opportunities that mothers can have to
9:29
connect. But I was overwhelmed and intimidated
9:32
by some of those things. And so there was definitely
9:35
a mom guilt for limited. bad experiences with
9:41
my son or, oh my goodness, the times of being
9:44
out somewhere and then having to rush to the
9:46
bathroom, the urgency, and then you have to haul
9:49
your kid with you and try to make it. Just the
9:52
stress level of trying to manage was so high
9:55
that it was very easy to avoid situations like
9:59
that. I have a great relationship with my son.
10:01
I was with him, right? In the long term, It was
10:07
fine. He didn't know what he was missing out
10:09
on. You know, it was just my guilt for not being
10:12
able to be the version of mom that I wanted to
10:15
be or thought I needed to be. But he got lots
10:19
of attention and care and we were at home together
10:21
plenty. And so he was a driver for me to just
10:25
keep going. Luckily, I had him and it was a motivation
10:29
to. Keep waking up every morning and keep trying
10:32
and keep trying to improve my health and those
10:34
sorts of things. So that mom role really saved
10:38
me in a lot of ways, honestly. So that's very
10:42
interesting because lots of times when we're
10:45
flaring, we just kind of want to be by ourselves,
10:48
right? And this ties to this isolation that a
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lot of us experience when we're flaring because
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the pain is so strong that this is all we want
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to deal with. Did you ever feel this desire to
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basically be by yourself for an extended period
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of time, to basically suffer in silence? Because
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yes, you had your husband as a support system,
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but then again, you had a son who was very young.
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And so even though you embraced this motherhood
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at that stage, as you just said, did you have
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those moments where you just thought, man, I
11:22
just wish I could suffer in silence, and I really
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don't want to be around anybody? I would say
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it became a part of how I cope with life now.
11:32
I still have a tendency to just want to shelter
11:36
and isolate when big overwhelming things happen
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because it's a pattern. It's a learned pattern
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over time of whether it's fueled by, I don't
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want people to see me suffering or I don't want
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to be a burden on other people. I think that's
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some of that underlying. mental narrative behind
11:56
that isolation, also embarrassment of the fact
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that I'm feeling what I'm feeling, but just that
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external stimulation. My body is taking all of
12:05
my focus, all of my energy. One more person that
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I need to focus on outside of myself sometimes
12:12
is just too much. So yes, absolutely. Can I just
12:16
lay in my bed in pain, in tears, being angry
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with the fact that I feel this way right now?
12:22
100%. That definitely happened. Yes. So you mentioned
12:26
your body. And my next question is then, how
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did you keep hope alive when you knew that your
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body was basically working overtime against you,
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right? As you were navigating different treatments
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and setbacks? Yeah. And it's this betrayal, right?
12:45
When your own body betrays you, and then you
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can't even trust your own body to keep up with
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you. As a person, I really struggled. Mentally,
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I really struggled. I went through some very
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dark and angry and bitter times because of the
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comparisons I saw between me and all the normal
13:10
people. And what was the question? I'm so distracted
13:16
by thinking about those times. What did you ask?
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I just would like to know. what you did or what
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your thought process was to keep this hope alive
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when you knew that your body was you know yeah
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really betraying you right yes i don't think
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i had hope for a very very long time though there
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was no keeping hope alive it was just keeping
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me alive was was the focus for a long time again
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i had my son so there was a reason to continue
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to exist and and i How did I keep hope alive?
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I think it became more of a, how do I just keep
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functioning in a way that can just keep up with
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life? I didn't have hope for anything better.
14:04
I didn't have hope for healing. I saw my UC journey
14:07
as, I'm just going to continue going through
14:10
these. patterns and these cycles, and I'm just
14:13
gonna have to deal with it. That was how I felt
14:17
for the longest time. Just accept your new normal,
14:19
right? It really... I had to hit some really,
14:23
really dark and low points before I got to the
14:26
space where I was like, I can't do this. I can't
14:28
be this way anymore. I have to make changes.
14:31
I have to figure out how to take care of my health.
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I need to figure out what I can do to somehow
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generate my own hope, right? How to find that.
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And so really over time, I started learning more
14:44
about... taking care of my health. And I took
14:49
a nutrition course. I was trying to go back to
14:51
school, trying to do something with myself. I
14:54
wanted to feel valuable in society because I
14:57
didn't. And so I was going back to school. I
15:00
took a nutrition course just to learn about taking
15:03
better care of my health and fell in love. I
15:06
was fascinated by that. Another core memory,
15:11
I had gained a ton of weight on prednisone and
15:14
I just, I hated myself after that. And I just
15:19
really struggled mentally. And so I was like,
15:21
well, maybe exercise. Maybe I can lose the weight.
15:23
Maybe I'll start exercising. And I kind of felt
15:28
like maybe that was going to be the hope. If
15:31
I could find a way for my body to get a little
15:33
stronger, then maybe that would... give me a
15:38
better capacity to live life and... I remember
15:42
I was like, okay, well, the only way I know how
15:45
to exercise is to go running, right? I think
15:47
that's like, that's how you exercise is you go
15:49
running. And, and so I was like, I'm going to
15:51
run from one mailbox to the next mailbox. Like
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that was my goal for like a week, just one mailbox
15:57
to next, just get outside. I mean, you can't
15:59
go that far anyway, when you're flaring anyway.
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And so just get outside and go from one mailbox
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to the next. And then I could go to, I could
16:06
run from one mailbox to two mailboxes and then
16:08
three. And so it was slowly like, That started
16:12
sparking something within me of like, oh, I can
16:17
achieve little goals and I can take care of myself
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and and grow in that way. And I still hate running.
16:24
I can run past a couple of mailboxes now, but
16:26
eventually, eventually worked into like group
16:30
exercise classes. And I just love that. And so
16:34
physical activity was really transformative to.
16:38
my sense of ability to do something, you know,
16:43
and that grew over time, definitely easier said
16:47
than done. But I think that was a turning point
16:50
in my life of just desperately needing something
16:53
to change and trying to do something very, very
16:55
small gave me some hope, achieving those little
16:58
things afterwards. Yeah. Yes, so it's not just
17:01
treatments, but lifestyle changes as well, at
17:05
least to help with sort of like the mental load
17:07
that you have sitting on your shoulders. So that's
17:10
really great. Now, jumping to today, how are
17:14
you feeling? I hesitate to answer this question
17:21
because I used to be so resentful against the
17:23
people who were living well. I'd be like, oh,
17:27
yeah, that's not real. Or they must have really
17:29
mild conditions. Or they're just in a short -term
17:32
phase where it's going well. That doesn't exist.
17:35
And so the fact that I can literally say, man,
17:38
I am healthier than I've ever been. I like myself
17:41
in a way that I haven't before. I feel like I'm
17:43
doing something with my life that's meaningful.
17:46
And I've had opportunities. I do competitive
17:50
jujitsu. I fight. I am so much better. And my
17:58
UC has been in remission for a handful of years.
18:01
And I'm constantly paying attention to making
18:03
sure I keep it that way. And it's a transformation
18:07
that I get to live now through so much hell and
18:13
so much work and effort. But I'm great. And I
18:17
know what a luxury that is. I know how valuable
18:22
that is. I have been at the worst where I'm weak
18:26
and useless and just broken. And so even just
18:30
feeling happy is what a blessing. And you just
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said it, you've been in remission for a couple
18:41
of years. We all know that remission is not a
18:43
cure. So we definitely don't take it for granted.
18:46
We hope that it's going to last forever. But
18:49
how do you deal with, and maybe you don't, but
18:53
I think most of IBDers, they kind of do. How
18:55
do you deal with this fear that your remission
18:58
time might be limited, that the next flare could
19:01
just be around the corner? Is that something
19:04
that you think about? And then when you do think
19:06
about it, how do you handle it? I think about
19:08
it all the time. We've been conditioned to think
19:11
about it. That is the pattern, is even when you
19:13
feel good, you know it's not going to last. You
19:16
know that next medication is going to fail. You
19:18
know that even if you eat a bad meal and your
19:21
body doesn't like it, you're like, oh my goodness,
19:23
am I flaring? What have I done to myself? Why
19:25
did I do that, right? And blame it on all the
19:27
wrong things. It is a conditioned response to
19:31
live in fear of the next flare, even when you've
19:35
been living in remission for a long period of
19:38
time. I think about it all the time. I still
19:41
get nervous. I genuinely have learned to pay
19:45
really close attention to my body and kind of
19:48
the natural signals that it warns me of. You
19:55
know, something will shift or something will
19:57
feel off. I can feel inflammation rising in my
19:59
body and the panic. I need to make sure that
20:03
this is my priority. I need to reset my life,
20:06
make sure that I'm stable. I could just keep
20:10
spinning on that topic. But that fear is so real.
20:14
It will never go away. And how do I deal with
20:18
it? I pay attention to that fear on a daily basis.
20:22
And I make active choices to acknowledge that
20:27
fear and make decisions on how I live my life
20:30
to prevent future flares. I will also say that
20:37
I've been doing this long enough to where there
20:43
is a new belief in me that a flare is temporary.
20:48
I think that's a helpful thing too after you've
20:51
gone through it long enough that at least understanding,
20:55
wow, my body is really overwhelmed right now.
20:57
Inflammation's going crazy, right? Something
20:59
needs to shift, but it can. And there is a down
21:06
after the height of intensity of disease activity.
21:11
So I think that helps too to lessen the fear
21:13
just a little bit when you start to believe that
21:16
flares can be temporary. And it's perfectly fine
21:20
to be fearful. I always say that we are not oversensitive.
21:24
We are not over emotional about our disease.
21:27
We live through this hell. There's a reason why
21:29
we have this fear. And I don't think that we
21:32
should apologize for this fear either, right?
21:34
Even when we're in remission, and it doesn't
21:36
matter if we're in remission five years or 10
21:37
years, because we do know that remission could
21:41
end just like that, right? So I actually I'm
21:45
one of these people that say like we should sort
21:47
of try and learn to almost embrace this fear
21:49
because yes, it keeps us in check, you know,
21:52
and like you just mentioned, you know, it brings
21:54
about changes in your lifestyle, changes for
21:56
your body, lifestyle changes for your mental
21:59
state. So if you look back now, this entire journey
22:04
from age 22 until now, in what ways do you think
22:08
that colitis has changed you as a person? So
22:12
many ways. There's a positive and a negative
22:14
answer to that. I'll start with the negative
22:17
because ending on positive is always better,
22:19
but it was trauma. It's a real life trauma, right?
22:23
And so mentally and emotionally, it changes the
22:27
way that you see yourself and your own self -concept.
22:30
It changes. your view on life and priorities
22:36
and values, there's a lot of grief and loss associated.
22:40
So it has definitely added that need for healing
22:47
in my life. At the same time, man, I feel like
22:53
I have a level of compassion for other people
22:56
that I probably would never have had before.
23:03
that, like, private hidden hurt within others
23:07
that everybody carries. And I'm grateful for
23:11
that, right? It gives opportunities for deep
23:13
and meaningful connection with others, which
23:16
is fueling and healing. But it's also forced
23:21
me to become a better version of myself, right?
23:25
It's forced me to learn a lot, right? I've learned
23:28
and gained so many things and I've had experiences
23:32
that have forced me to self -reflect in different
23:36
ways and take care of myself in different ways
23:39
and learn about, I mean, it changes everything.
23:44
Your relationships and your activities and your
23:47
hopes and your goals, how does it influence my
23:50
life? It's changed it. drastically it took away
23:54
my life everything i expected my life to be and
23:57
then forced me to rebuild a new one and luckily
24:01
that fight has rebuilt one that i i never could
24:05
have imagined otherwise yeah so speaking of other
24:10
people I am currently doing a regimen of physiotherapy.
24:16
And so you talk with your therapist and naturally
24:19
we landed on the topic of IBD and I mentioned
24:22
colitis. And he looked at me and said, oh, what
24:26
is that? And so I thought like, oh, here we go.
24:28
All right, here I go into my spiel of like explaining
24:30
what it is, try and keep it concise, right? I'm
24:33
curious to hear from you how you explain colitis
24:37
and what you're going through IBD to people who've
24:40
never heard of it when you face that. I'm, this
24:44
might be comedic, but I feel like there's got
24:46
to be a little flare of dramatic for people to
24:49
even comprehend how intense it is. And so I will
24:53
always say something along the lines of, well,
24:55
it's an autoimmune illness, meaning my body's
24:59
immune system sees my colon as a foreign object
25:01
and just mounts an attack. So my body is basically
25:05
attacking itself from the inside out. So then
25:07
I have these open wounds, these ulcerations in
25:10
my colon that just bleed. And that's ulcerative
25:14
colitis. I like it. It is. It is. Your body's
25:19
killing you from the inside out. Exactly, exactly.
25:23
And then sometimes you're like, oh, wow, you
25:24
know, really? It's like, yeah, it's really that
25:27
dramatic. There's no other, there's really no
25:29
better way of saying it, you know, except that
25:31
you could say, well, I'm constantly running to
25:32
the toilet and I have to be careful that I don't
25:33
shit myself. Yeah, I like that explanation. Rushing
25:38
to just crap blood. Like that's, yes. So you
25:44
had a... Very strong support system you mentioned
25:47
through, you know, via your husband. Your son
25:50
was maybe a little bit too young at the time
25:52
to support you. But in a way, like you explained
25:54
to us, he did support you, right? He gave you
25:56
sort of this support system. But being around
26:00
somebody, again, your husband who really was
26:02
there for you, what kind of advice, what kind
26:05
of message do you have for people who are living?
26:08
close to someone with colitis, who are living
26:10
with someone who has colitis, who are living
26:12
with someone who got recently diagnosed, who
26:14
is struggling. What's your message to those people?
26:17
What's your advice to those people? The relationships
26:20
in a marriage with a chronic illness are difficult.
26:23
Yes, my ex -husband was doing the best that he
26:28
could to be supportive. But there's still a limitation
26:32
of understanding. And there's a... there's a
26:36
pressure, right? Not only that I was fully aware
26:39
that this isn't really what he signed up for
26:41
when he married me, right? And so I carried a
26:44
lot of that burden and disappointment, feelings
26:48
of disappointment, not that he made me feel that
26:50
way, but I felt it. But it also shifted his life
26:55
into being more of a kind of a caretaker, right?
26:58
Like paying attention to how I was feeling and
27:01
having to navigate my frustrations and emotional
27:06
roller coasters. And so, yes, he did his best
27:09
to be supportive, but it is not easy for either
27:13
partner in a relationship when you're doing that.
27:16
And so that can be hard. I think when I say this
27:20
next part, it's not directly tied at him, not
27:22
at all, but in general for those supporting,
27:25
right? Family and friends supporting others.
27:27
I think I just tell them to believe. their UC
27:33
friend. Like, just believe them. Believe them
27:35
when they're exhausted. Believe them when the
27:38
fatigue is taking over. Believe them when they
27:40
tell you that they just don't feel well. To actually
27:43
honor that and trust that when they're actually
27:46
vocalizing that out loud, that's when it's real.
27:51
Because most of us aren't even going to say it
27:53
in the first place. But, right? When we're saying
27:56
it out loud and being like, I really, I'm, you
27:58
know, setting those boundaries. Allow people
28:01
to set their boundaries, respect those, bring
28:04
joy and light and hope, spend time with them.
28:07
Even that means like playing a card game on the
28:10
couch together, right? Just allow yourself to
28:12
adapt to their needs, believe them when they're
28:14
talking about how trashy they feel and let them
28:20
know that they're still very much loved and valued
28:22
despite the fact that they are not living in
28:25
the way we all expect to be living. Very well
28:29
said. I like that approach. So now we talked
28:32
about others. Let's shift it back to you. Looking
28:37
back, do you have any regrets, any guilt about
28:41
anything, how you handled the disease, how you
28:44
navigated it? I wish I could have learned faster.
28:49
I wish I could have avoided a lot of suffering,
28:51
right? I mean, that's just part of life's journey
28:55
is slow growth and development and learning.
28:57
I wish I could have. told myself then everything
29:00
I know now, that would have been great. But I
29:03
wish I would have been kinder to myself, I think.
29:07
You know, I just told you that others need to
29:10
believe us when we feel sick. I should have given
29:13
myself that same grace more often. I should have
29:16
allowed myself to trust that when my body felt
29:20
like trash, that I needed... to not feel guilty
29:26
about that. I don't know why I felt so ashamed
29:29
and so guilty and so embarrassed instead of just
29:34
being kind and accepting and giving myself permission
29:39
to be different and to take care of myself and
29:44
live in a different way than others. So much
29:47
easier said than done, but man, that would have
29:50
reduced a lot of suffering to be able to just
29:54
have nicer narratives in my head throughout the
29:57
whole experience, for sure. And then let's not
30:00
forget to not wait for months ignoring symptoms,
30:04
especially any sort of bleeding, you know, from
30:06
the rectal area, right? Minor detail, don't bleed
30:09
for months and not tell anyone. Yes, yes. Actually,
30:12
that's a really good point because I... I kind
30:16
of continued that pattern. I hated letting anyone
30:18
know that I was sick. I really refused to talk
30:21
about it for the longest time, longest time.
30:24
I still get uncomfortable sometimes admitting
30:27
it. And I just had this sense of pride that I
30:32
didn't want people to know I was sick and struggling.
30:34
I didn't want to be seen as weak. I didn't want
30:37
to be seen as sick. I didn't want extra treatment,
30:40
extra attention, or like those, oh, tilted head
30:43
responses, you know? And And so I genuinely fought
30:48
to hide it and just function, right? Function
30:52
out around the world and then just come home
30:54
and crash. That was not healthy for me. I did
30:57
not allow myself to build an extensive support
31:01
system because I was so ashamed of what I was
31:04
experiencing. That is also a regret of being
31:09
so self -isolating physically and emotionally.
31:16
So that's really perfect because now you've touched
31:18
on what I'm going to talk to you next, and that
31:21
is sort of like being open about the disease.
31:23
And you just mentioned you sort of kept it to
31:27
yourself and you were not really open about it.
31:29
I want to ask you what happened that you changed
31:33
that direction, right? Going from sort of being
31:35
embarrassed about it, not wanting to mention
31:37
anything, to being more open about it. The reason
31:39
why I ask you this is because you are quite outspoken
31:43
about it, especially on social media, you know,
31:45
TikTok. This is one of the ways that we actually
31:47
connect it, right? And I've seen your stuff and
31:50
you seem to have absolutely no fear to, you know,
31:53
put the camera in your face and to talk about
31:56
colitis. So what brought that about? And at what
32:01
point sort of did you have this epiphany of like,
32:03
hey, let's... Let's switch to being actually
32:06
open about this and talking about it and trying
32:08
to raise awareness. Was it a singular event that
32:11
sort of flipped the switch or was it sort of
32:15
a gradual opening, if we can call it that? That's
32:19
a great question. Yes, there's a singular event.
32:22
I will also say that I'm more comfortable telling
32:27
my story and social media allows for this. to
32:30
people who I know relate to it, right? So it's
32:35
a lot easier when we're building a community
32:37
with one another. And if I'm sharing things virtually,
32:41
I'm speaking to the person that I know understands
32:45
and is living with the same kind of suffering,
32:48
right? It's so much easier to connect on that
32:51
level. I still get very insecure about people
32:54
who kind of know me. listening in on those things,
32:58
which is, again, this learned response over time
33:01
of trying to isolate. And I don't, I'm excited
33:05
for that to shift and change even more over time.
33:10
But what did change for me, I had the opportunity
33:14
eventually to end up getting my PhD. So I went
33:18
into a PhD program that focused on health promotion
33:22
and health behavior and health education. And
33:25
so within my PhD program, it was very research
33:28
-based. So I did my dissertation and I'm creating
33:30
a... research project from scratch that took
33:33
me multiple years. And it's the big question
33:37
of, okay, what topics do I want to address? What
33:38
do I want my focus to be? I knew deep down inside
33:42
that ulcerative colitis is... I mean, the whole
33:45
point of me gaining my education over time was
33:48
just to learn more about how to take care of
33:50
my own health and understand it in a bigger,
33:52
broader context. So I knew that my education
33:55
was focused on understanding self -management
33:59
of inflammatory bowel disease. But making a decision
34:02
to do a dissertation on ulcerative colitis meant
34:05
that I had to tell all of my mentors and anyone
34:10
who was listening and anyone who was publishing
34:13
that I had ulcerative colitis. And that was terrifying
34:17
for me. I don't even, I wish I could understand
34:21
more why it was so terrifying. But again, it
34:23
was just this, I don't want to be labeled in
34:25
a certain way. I don't know. And so it delayed
34:30
me. Because I knew what kind of work I wanted
34:33
to do, but I was so intimidated by implying to
34:37
the world now that what I live and breathe is
34:41
ulcerative colitis. So finally getting to that
34:45
point of realizing that my life is going to have
34:48
purpose if I use my experiences to benefit the
34:52
lives of others. Like that's what I have to hold
34:56
on to. And so as I worked on that dissertation,
35:00
first finally being like, okay, this is the topic.
35:03
My PhD mentor was like, well, you don't have
35:06
to tell people you have UC. You can just work
35:08
on the topic. And I was like, it's not the same
35:11
if I just talk from a general space. I'm in this.
35:14
I need to own this. But I had the opportunity
35:16
to go into the homes of multiple different ulcerative
35:20
colitis patients and speak to them one -on -one
35:22
about their stories and how they were navigating
35:25
the process. And it was so... healing for me
35:29
personally to connect with other people's stories
35:32
and to connect with others who understood what
35:35
I had lived through as well and share that. And
35:40
so I very quickly learned that the more I'm authentic
35:44
to myself and what I've experienced and what
35:49
I... what I value most because of these life
35:52
experiences I mean it has shaped who I am why
35:55
would I not own who I am now because of my experiences
35:59
so the more I tried to be more authentic to myself
36:02
and realize that I wasn't alone and that there
36:05
were a lot of other people dealing with this
36:08
that healing moment allowed me to give myself
36:11
more permission to open up And really take ownership
36:16
of this has been so much of my life. It has shaped
36:20
who I am today in so many ways. I have to include
36:24
it as part of who I am. I have to. And you don't
36:28
stop there because you are on a quest to help
36:32
people, right? Help people with IBD, with colitis.
36:35
And you do coaching as well. Talk to me a little
36:38
bit about this initiative, what it is that you're
36:40
doing, why you want to do that and how this is
36:42
done. how people can reach you even. Yes, thank
36:45
you. So as I was working on this research, I
36:49
would have the opportunity to go to medical research
36:51
conferences, Crohn's and Colitis Congress, things
36:53
like that, where I was interacting with the other
36:56
big thought leaders, the physicians, and the
36:59
research that's being done. And it was just so
37:01
evident to me that no one is filling the space.
37:07
outside of the physician's office, right? And
37:10
so you go, you have your doctor's appointment,
37:12
and they help diagnose and check where you are
37:16
and make adjustments to your meds. And they spend
37:18
10, 15 minutes with you. And then you move along.
37:23
And then you go home. And you have the daily
37:25
burden of living with, you see, the mental and
37:28
emotional, the social burden, trying to figure
37:30
out diet, trying to figure out how to get your
37:33
health back under control. And there's just,
37:37
especially at the time I was in where this was
37:40
just becoming more and more evident to me, there's
37:42
not a lot of support or resources or provision
37:47
of care that's truly addressing that comprehensive
37:51
approach. All of the pieces of the puzzle that
37:54
are living with you see. And there have been
37:59
a lot of strides in the field to fill that gap.
38:03
But that's where I belong. I knew that that's
38:05
where I belonged because not only did I have
38:07
my own story, but I had this educational background
38:10
that was really filled with lifestyle interventions
38:14
and health behavior and the psychological process
38:17
that works through that. And so I ended up pivoting
38:21
out of the research world, had some great opportunities,
38:24
learned a ton. But I knew that instead of just
38:28
running research that would get published, that
38:31
maybe would inform some physicians, maybe hopefully
38:34
some policies. I just wanted to connect with
38:36
the people. I knew that that's where I belonged
38:39
is to actually using my life experiences and
38:42
everything I learned professionally, personally,
38:44
to make a difference in the struggle, that daily
38:48
struggle. So yeah, now I've pivoted out of that
38:52
world and then moved into that one -on -one mentorship
38:55
and working with individuals who... I did this...
39:01
alone, right? For so long. So many of us are
39:03
doing this alone. I had to teach myself there's
39:06
so much trial and error that comes through and
39:09
so many mixed messages. And how do you discern
39:11
what's true, what's not true, what's useful,
39:14
what's not useful, right? It's just so messy
39:17
trying to wrap your head around how to truly...
39:21
get your life back on track. And that's my purpose,
39:26
is to work directly with individuals who can
39:29
benefit from everything that I've learned and
39:32
genuine compassion, genuine understanding, genuine
39:36
care, and a genuine partnership to run the journey
39:41
together instead of alone. That is my goal, is
39:45
to provide that comprehensive picture and that
39:47
connection and support. So I try my best to offer
39:52
as much as I can to help support everyone. And
39:57
then when people want that one -on -one connection
40:00
and additional, I don't want to say hand -holding
40:04
because I don't do everything for you, right?
40:07
It's everyone's individual journey. But that
40:09
connection and that support, that one -on -one
40:11
mentorship there, that's what I do. And that's
40:15
really a great initiative and really seems to,
40:18
like you said, to be filling a certain void that
40:21
not many IBD patients even thought about, really.
40:24
And I think it's really great. We're going to
40:26
for sure put your contact info in the show notes
40:29
as well so that people listening can reach out
40:31
to you at their leisure. So, Kelly, as we sort
40:35
of come to a close, I have two more questions
40:37
for you. I want to take a quick trip back into
40:39
the past and then we'll take a quick trip into
40:41
the future. Based on everything that we talked
40:44
about today, based on your entire journey, if
40:48
you could speak to yourself back at age 22 on
40:52
the day you got diagnosed, what would you tell
40:55
yourself? I'd probably hug her first. I would
41:00
probably hug her and hold on to her for a long
41:03
time. Cry with her, probably. I'll try to keep
41:10
my emotions at bay. I think I would tell her
41:14
that that diagnosis and all of the hell that
41:19
was coming in the future would build, if she
41:24
fought really hard, would build a strength and
41:28
resiliency that she couldn't even imagine could
41:33
exist, right? That there would be this capacity
41:37
to do and think and see. in the world that only
41:43
that level of hell can generate. And to fight,
41:50
to start learning how to take care of your physical
41:53
and emotional health as fast as possible right
41:55
away. And, you know, that paying attention to
41:58
what you eat and how much you move and that nervous
42:00
system regulation and your mental health and
42:02
your sleep, all the things, all the pieces, I
42:05
would have given her all that information. But
42:07
there is hope, right? There is hope for that
42:10
self -development. And hard things, it's like
42:15
diamonds, right? A lot of pressure and a lot
42:17
of hard has the capacity to create something
42:22
beautiful and a much more pure, authentic version
42:27
of you. And I wouldn't be who I am today without
42:31
what I've experienced, for sure. A message of
42:35
power, a message of strength, a message of hope,
42:38
a message of self -care as well. So I think that
42:40
really sums up what dealing with this disease
42:44
is. So you mentioned it earlier, it's always
42:47
great to end up with hope or the positive, you
42:50
said. Looking ahead, and this might be a tough
42:54
question to answer, but I'm sure you have some
42:57
sense of hope at least for it. Do you think that
43:00
we will see a cure to IBD in our lifetime? Oh,
43:04
I would love to end on a hopeful note. Shoot,
43:07
that's, you know, I have thought about this a
43:12
ton. I think there's two answers to that question.
43:16
And it depends on what you count as cure, because
43:19
I think there are amazing medical strides happening,
43:23
right? The science is getting much better at
43:26
developing effective treatments. for UC. So I
43:31
think that the medical care will improve and
43:35
the stigma will reduce and the openness and the
43:41
connections will improve. I think all of that
43:43
is headed in a good direction. At the same time,
43:46
our society, the pressures of our lives, autoimmune
43:51
illnesses are not going away. And the root cause
43:55
of chronic inflammatory illnesses is inflammation.
43:59
And that is coming from the air that we breathe
44:03
and the things that we tell ourselves and the
44:05
things that we ingest into our bodies, the experiences
44:08
we have, the trauma that we hold. Life is just
44:10
getting so much harder as time goes on and that
44:14
affects our bodies and our bodies can't keep
44:17
up with the world around us right now in the
44:21
best way because We shouldn't be able to keep
44:24
up with all of that. So I think that the pressure
44:27
of real life is getting stronger, which is going
44:32
to lead to more autoimmune illnesses within ourselves
44:36
and within the population. And so I think it
44:39
will be harder and harder to manage UC if we
44:43
continue to match the world around us and lifestyles
44:48
like that. So do I think there will be a cure
44:50
in our lifetime? No. But is there hope for a
44:56
better quality of life and genuine thriving?
45:01
Yes. Yes, I do. Pragmatic down to earth with
45:06
a little bit of hope as well. So I'm not even
45:08
going to further elaborate because I really think
45:10
that you summed it up in a very good solid way.
45:15
Kelly. Thanks so much for taking the time to
45:17
talk with me today. It was really a pleasure
45:20
for me to talk about your colitis journey and
45:23
IBD in general. For you, I wish you nothing but
45:26
the best and continuing remission. And thank
45:30
you also for what you're doing and keep speaking
45:32
out and keep helping people. I think sense of
45:34
community is really what we need in IBD, Crohn's
45:39
and colitis. So keep doing that and all the best
45:41
to you. Thank you so much again for being here
45:43
today. Thank you. You too. Absolutely. That's
45:46
it for today's episode of Talking S***, presented
45:49
by Colitis Unfiltered. I'm Frank Tabering, and
45:52
if this hit home, or hit your gut, do us a favor,
45:55
subscribe to the show, and follow us at Colitis
45:58
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46:02
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46:05
inspiring stories from the bathroom floor.