Latest / Crohn's & Colitis Unfiltered / IBD, treatment failure and hope: Savannah’s search for remission

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IBD, treatment failure and hope: Savannah’s search for remission · Crohn's & Colitis Unfiltered

0:02
Without this diagnosis, I probably would not
0:04
be the person I am today in terms of how understanding
0:09
and empathetic I am towards people. Because I
0:12
didn't grow up in a family like that. They were
0:15
just kind of very judgmental and rash. And I'm
0:19
very, very empathetic. And me going through what
0:24
I did also kind of pushed me to what I wanted
0:26
to do career -wise. I have my bachelor's in psychology
0:29
and my master's in psychology, and I'm getting
0:32
my doctorate in it because I want to do therapy,
0:35
to just be that person that I needed when I was
0:38
younger. This is Savannah, who got diagnosed
0:41
with ulcerative colitis at age 16 in Nashville,
0:45
Tennessee. For years, Savannah struggled to get
0:48
her IBD under control. moving from biologic to
0:52
biologic, until she landed in a clinical study
0:55
for a new medication. Today, on the Colitis Unfiltered
0:59
podcast, she's going to talk to us about what
1:02
that looks like and what it was like to live
1:05
with ulcerative colitis through crucial teenage
1:08
years. My name is Frank Tabering, and Savannah,
1:11
welcome to the show. Thank you for having me.
1:14
So Savannah, let's go back to the beginning,
1:18
age 16. Talk to me a little bit about what your
1:21
first symptoms were. You know, what triggered
1:23
you to think that something was really wrong?
1:25
And then also how you ended up with a ulcerative
1:29
colitis diagnosis. The first symptom is like,
1:33
I call it the hallmark cramping. There's no other
1:36
way to explain ulcerative colitis cramping. And
1:38
I was sitting in Spanish class. I remember taking
1:41
a exam and I was like, maybe I have like a stomach
1:45
virus or maybe I'm just stressed from this test.
1:47
And, you know, it's working me up. But it felt
1:49
like somebody was inside my intestines and like
1:52
doing this, if that makes sense, just like squeezing
1:54
it out like a sponge. And I was like, this, like,
1:57
I don't know what this is. And then like that
1:59
kept progressing. And then within a week or two
2:03
of that, I started seeing blood whenever I was
2:05
going to the restroom. And then I was like, okay.
2:08
And then again, as a, especially as a teenage
2:11
girl, you're confused because you're going through
2:13
changes. You're like, maybe it's my menstrual
2:15
cycle. Maybe it's not. So I kind of ignored it.
2:17
Well, I ignored both of those symptoms for a
2:19
month until the biggest one of all, urgency.
2:24
That kicked in and you can't really ignore that.
2:27
And so at that point when I was like, okay, I
2:29
can't go to class. I'm sitting in the restroom
2:31
all day. I have to tell my parents. That was
2:34
kind of where I was like, okay, I need to get
2:36
seen. And so that's, yep. I remember like it
2:40
was yesterday. That's the progression of how
2:42
it worked until I had forced myself to tell my
2:45
parents because I did not want to go to the doctor.
2:47
You actually described it very well because I
2:50
myself once referred to it as like claws, just
2:53
grabbing onto your intestines and just twisting
2:56
it relentlessly. And I'm happy there's somebody
2:59
else out there that basically felt it exactly
3:01
the same way, or at least that metaphor to explain
3:04
it. And that's really what it feels like. So
3:06
I can relate. When you said those words, it took
3:09
me back to 2013. I was like, yep, that was the
3:13
pain. Exactly. Okay, you told your parents. Then
3:16
what happened next? Did you see a specialist
3:18
right away, colonoscopy and diagnosis? Or how
3:21
did you end up getting to the moment where you
3:25
got the news that you had IBD? See, I grew up
3:28
in a very rural town called Savannah, you know,
3:32
and there wasn't any specialists. Like our top,
3:35
like the top dog as far as medical care goes
3:37
was like the general town surgeon. And so...
3:40
I went to urgent care, which was kind of just
3:42
like, you know, what's open overnight before
3:44
I can actually see my primary. And they're like,
3:47
all right, we're going to run some labs. We're
3:48
going to get a stool sample and all that. And
3:52
I was like, okay, you know, because I was like,
3:55
they're going to hopefully figure out what it
3:56
is maybe. Like I said, I thought it was a stomach
3:58
virus. They weren't able to find anything. Like
4:01
they weren't sure what it was. They're like,
4:02
I can see things are elevated, but I don't know
4:04
what it is. And at that point, I had to go see
4:07
my primary. they did the same thing. Another
4:10
round of blood work, another stool test. And
4:13
I'm like, okay. And then I got referred to another
4:16
doctor like, hey, they might know. And like,
4:19
I was getting bounced doctor to doctor. And I
4:21
was like, this is getting old. Like after the
4:23
fourth blood draw, I was like, okay, like somebody
4:25
figure out what's going on. Like at this point
4:27
to bouncing doctor to doctor, I was absolutely
4:30
miserable because at this point, my symptoms
4:32
have been going on for at least two months. So
4:35
you can imagine, I started losing weight at that
4:37
point. which that was, I was like, Oh, like I
4:41
did not expect to lose. Like the losing weight
4:43
part, like you think isn't bad, but for me, I
4:46
was already tiny. Didn't have an issue with my
4:48
weight. So that was terrible. But at that point,
4:50
the general surgeon was like, Hey, I think that
4:54
this is probably what you have. And so he referred
4:57
me out because he says, there's basically no
4:59
point. There's no point of, you know, me doing
5:02
stuff here because I don't have the kind of equipment
5:05
to deal with that. Like, you know, basically
5:07
it's out of his scope at that point. You need
5:09
to get referred. And so went to Children's Hospital
5:12
at Vanderbilt and one of their GIs there did
5:15
an endoscopy, a colonoscopy, confirmed that I
5:18
had colitis. It was in the moderately to severe
5:20
range. Yeah. And then that's how it started.
5:24
But basically just bouncing everywhere. I don't
5:27
know if anyone. I mean, I'm sure other people
5:29
have experienced that, but that was the most
5:30
annoying part, doctor to doctor to doctor to
5:32
doctor. And they're just like, your arms are
5:35
bruised up from going to have to get your blood
5:37
drawn and you're just, you're tired of it. So
5:40
yeah. That's true. I've talked to patients who
5:43
had similar issues getting bonds from doctor
5:45
to doctor and they were not even living in a
5:47
rural town. So it's definitely happening more
5:50
than you think. Okay, so you've received the
5:53
diagnosis finally, ulcerative colitis. Did you
5:57
hear about this before? Was that really the first
5:59
time you heard about this? And how did you deal
6:02
with this mentally, getting a diagnosis that
6:05
you have this incurable, you know, chronic illness?
6:08
Did you do your own research? Like, how did you
6:11
find out about what that really, really entails,
6:14
IBD? hearing what it was and I always joke around
6:20
with people I'm like I didn't even know how to
6:21
spell it until I figured out I had it and so
6:22
I'm like ulcer what like yeah I was like I didn't
6:25
know how to enunciate or anything I was like
6:27
I have no idea what this is because I didn't
6:30
know anyone around me that had it and I've never
6:32
seen it and so no I didn't I didn't know what
6:35
it was at all and then I'm getting choked up
6:37
a little bit because I remember you're especially
6:39
as a teenager getting diagnosed I was a cheerleader
6:42
I was in honor society I was I'm very type a
6:45
and so When you're a type A person and you get
6:48
diagnosed with a chronic illness, that is the
6:51
worst combination on earth to tell somebody you
6:55
need to slow down. You need to, you know, you
6:57
can't, and I say you can't live a normal life,
7:00
but you need to, you can't do all the things
7:02
that you used to before until you get your health
7:03
in check. And so I kind of, in a way, dissociated.
7:08
And I was like in denial. And I was like, no,
7:11
like, it's not like you're saying it's incurable,
7:14
whatever. Like, I'll take this. I'll take these
7:15
meds. I'll do whatever you tell me. But whatever.
7:18
And I kept trying to live my life normally, which
7:20
was not the probably best response because it
7:22
prolonged a lot of my suffering between points
7:25
of remission. And so. Yeah, but I mean, as a
7:28
16 -year -old, I don't think you would expect
7:30
them necessarily to slow down. Yeah, no, of course.
7:34
So, you know, keyword meds, you mentioned this.
7:38
Tell me a little bit about the treatments that
7:40
you jumped on after your diagnosis and then also
7:44
where you are at today with your colitis. I believe
7:49
I'm enunciating these correctly. So forgive me
7:52
if I'm not. I mean, but meslamine, obviously,
7:54
that was the first one I tried. With prednisone,
7:56
I hate prednisone with a passion. Just putting
7:59
that out there. Done prednisone. I was also experiencing
8:03
a lot of body aches. So they also said, oh, let's
8:06
try, you know, gabapentin. That, yeah, that was
8:08
another one. I was like, no, that did nothing
8:10
for me. And then 6MP, mercy capipurin. And then
8:16
it has been Antibio, Remicade, Sky Rizzy. I've
8:21
jumped through a few. And then now I joke around
8:26
that I'm a lab rat because I'm currently in a
8:27
research trial for a new medication for ulcerative
8:30
colitis. And I recently just got started on that.
8:33
So that's very new. Okay. So you went through
8:37
some of the biologics. Did you? So I'm assuming
8:41
because you jumped from one to the other, they
8:43
just didn't work, right? Or did you experience
8:46
actual periods of remission before they failed?
8:49
Did they fail immediately? And also, so that's
8:52
my first part of the question. And then the second
8:54
part is how did you actually end up in a research
8:57
study? Well, with the meslamine, I noticed that
9:00
my body responded to it for a little bit. I was
9:03
good for about two years initially. Once I got
9:06
stabilized and I was able to taper off the prednisone,
9:08
I was like, okay, this is fine. It's working.
9:10
And then I had, you know, graduated high school,
9:12
gotten to college, new stressor. I started flaring
9:15
up again. So my body does not respond well to
9:18
stress at all, at all. And so moving out on my
9:22
own, going away, I started flaring up again.
9:25
And then so I was like, okay, time to go back
9:29
to, you know, the drawing board, figure out what
9:30
we need to do. And then they had suggested Remicade.
9:34
Remicade itself did nothing for me. It just it
9:37
felt like I joke around. There's some medications
9:39
when you have a chronic illness that feel like
9:41
you're either just getting saline or you're taking
9:43
a sugar pill. It doesn't do anything. And I feel
9:46
like I'm wasting my time. And so that's how I
9:48
felt about Remicade. Intivio, that one was a
9:53
little bit disheartening because it worked for
9:56
so long. I was in a period of remission for around.
10:00
I want to say almost five years and I felt so
10:03
normal and to feel normal is such a gift. And,
10:07
um, I want people to understand that to feel
10:09
normal is such a gift. And when you're flared
10:12
up, I don't think it's not until you're flared
10:14
up that you really realize that. And, um, but
10:17
just one day stopped working and out of nowhere.
10:20
And then we had recently tried Sky Rizzy and
10:24
it just, I, it didn't work with me. And I was
10:27
just like, Okay. You know, you know, and then
10:31
I'm going to, I'm not going to lie at this point.
10:33
I'm a little bit like, I'm trying to be optimistic,
10:35
hoping that this research medication works, but
10:37
how I got into the research trial, it was, it
10:42
was kind of like, I don't know. It's as soon
10:46
as that I had gotten hopeless about the Skyrizzy
10:49
not working. I got a call from a research coordinator.
10:52
That's, you know, luckily this place is also
10:54
where I live now. And they're like, Hey. we're
10:57
screening for this. You've already had a scope
11:00
in this set amount of days. You meet all the
11:02
criteria and you fill these medications. You
11:05
would be a perfect fit. And it was kind of just
11:08
a, it happened at the right moment kind of thing
11:10
because they were about to close out the screening,
11:13
like not, not the screening process, but they
11:15
were about to hit out the, I guess their max
11:17
capacity, I guess you can call it, but it might
11:20
be called screening process. I don't know. It's
11:22
also a little early for me. So, but yeah, it
11:26
was just kind of, a god thing um it came in at
11:30
the right time and i'll say this though already
11:33
in my little time in a research trial i was not
11:37
anticipating being at a doctor's office that
11:39
much i thought i'd been to a doctor's office
11:41
a lot but um it's so much stuff like and you've
11:44
got to be so on top of it potentially for a lot
11:48
of people that are ill with IBD, clinical study
11:51
carries maybe a certain stigma. Oh, there's no
11:54
certainty there. Is it something that is going
11:58
to potentially work? Is it going to fail me right
12:00
away? It's another medication. So tell me a little
12:03
bit about what does this particular clinical
12:05
study... look like and to answer your question
12:07
yes please do go a little bit into detail because
12:09
it's very interesting for people to to hear that
12:12
this might not just be an infusion that you get
12:15
every eight weeks right or a pill that you swallow
12:17
daily yeah tell us what does it look like for
12:20
you basically day to day okay so basically um
12:23
before i got to that point if somebody from what
12:26
i understand also as well if somebody had not
12:28
done all the things that i was doing before You're
12:30
going to have to get your scope. You're going
12:32
to have to do baseline labs. You're going to
12:34
have to do stool samples very, very frequently,
12:36
which is very annoying. Because if you've been
12:39
there, you've already done the walk of shame
12:42
with the bag. You already know. But you have
12:45
to do that to get in. And once you get in, I'm
12:49
at the doctor's office currently right now every
12:51
two weeks to do baseline labs, have my physicals,
12:55
do another stool test, and also do a UA. Also,
13:00
aside from just making sure you're not consuming
13:02
drugs and alcohol because you cannot be doing
13:04
that, you also have to be, as a woman, you have
13:08
to make sure you're not getting pregnant, of
13:09
course, because there are risks, you know, with
13:11
any clinical trial that if you get pregnant,
13:14
something might happen to the fetus. And so that's
13:16
very valid. But you're doing that pretty frequently.
13:19
Like my arms, I think for the last little, like
13:22
two months, they've been consistently bruised
13:24
because I'm getting so much blood work. And then
13:27
as far as my day -to -day, right now it's these
13:31
three bottles. And I have no idea what dosage
13:35
it is. There's a 75%. It's a double -blinded
13:37
study. And so the office doesn't know what I'm
13:41
on. The doctor doesn't know what I'm on. Only
13:43
whoever randomized me. And so I have three bottles.
13:47
And I have to take one pill out of each one every
13:49
morning. And I cannot eat four hours before.
13:53
And I can't eat for two hours after, of course,
13:55
let the medication get in my system. And so I
13:59
have no idea if I'm on all three of your placebos
14:01
or if it's 150 milligrams, 300 milligrams or
14:05
600 milligrams. I have no idea. Now, is it in
14:10
my head? I hope it's not because usually you
14:12
don't want side effects with things. But as soon
14:14
as I started taking it within a few days, I've
14:17
already noticed some things like a little nausea,
14:20
a little bit of a headache that I usually don't
14:22
get. And so I'm like. Maybe, maybe that's medication
14:25
and maybe it's trying to do its thing and I'm
14:27
in an adjustment period or maybe it's all in
14:29
my head. I don't know. But either way, I mean,
14:32
I'm, it's, it's nerve wracking because every
14:35
morning I'm taking this and I'm like, there's
14:37
not even 200 people across the globe that are
14:39
waking up every morning taking this. And I don't
14:42
know what's, I don't know all the scientific
14:44
things. Like you can know the science behind
14:46
Ulster class. I'm not a scientist. I don't know
14:48
medication science. So it's scary. I don't know
14:51
what I'm putting necessarily in my body, but
14:53
I'm desperate for relief. So at this point, I'm
14:55
willing to take anything, inject anything, do
14:58
anything to feel better. And so, yeah, that's
15:02
where we're at today. Yeah. And of course, you
15:05
say it's pretty stressful, but you have to keep
15:07
your stress in check because if you stress too
15:09
much, then that's going to do harm to your body,
15:11
you know, and that may make your symptoms worse.
15:13
I see you said that you're pretty early into
15:16
this study, but how are you actually? feeling?
15:19
Do you consider yourself in a flare currently
15:21
still? Are you sort of on the cusp? How is your
15:25
disease treating you these days? Well, by, I
15:31
guess you could say, a scientific measure. I
15:33
don't know what it is across the globe, but over
15:36
here we have our Mayo scores. That's how they
15:39
also track how you get into the study. And my
15:42
Mayo score out of a nine is currently an eight.
15:45
Um, so I'm pretty flared up, um, by that measure.
15:48
And then as far as me and my personal opinion,
15:51
I, I'd feel like I'm, I'd feel like I'm really
15:55
moderately to severe. I'm, I feel like I'm not
15:57
super severe, but that's also because I've, I've
15:59
been flaring since February. So I'm, it was way
16:03
worse at this point. I'm going to the restroom
16:05
sometimes seven times, maybe eight times a day.
16:10
And I am seeing blood. However, it's not every
16:13
single time. And so for me, that gives me hope
16:15
because it's it was every single time. And sometimes
16:18
it was just blood passing alone. And so to me,
16:22
that shows me, OK, I am working towards getting
16:25
better. And so because if I'm at the point that
16:29
I'm seeing blood in every single stool, then
16:30
I'm like, OK, I'm a little bit depressed. What
16:32
like, you know, like, but I do have some hope
16:35
because I am starting to see traces of normalcy.
16:38
Good, good. Yeah. And we're going to come back
16:40
to sort of. this idea of how to move forward
16:43
into the future but before that i do want to
16:45
go back back in time a little bit because um
16:48
now just listening to you um several years have
16:52
passed since your diagnosis and 16 like you said
16:55
yourself it's a crucial age it's a crucial age
16:57
just because of the age but then for you it was
17:00
extra hard because you know you said you've always
17:03
been that type a person very active and in activities,
17:08
basically. So tell me a little bit about how
17:11
you navigated this very crucial period in your
17:15
life, in your very young adulthood. As somebody,
17:19
you know, living with a crippling disease, what
17:21
did that do to your social life? Did your friends
17:25
understand? Were they supportive? Were you angry?
17:30
Did you have any regrets going through that period?
17:32
Those special teenage years, you know, what was
17:35
that like for you? One grew up in a small town,
17:39
very close -minded people. This is not saying
17:42
that they're dumb. I'm just saying they're ignorant
17:44
to a lot of things. And because they don't see
17:47
it, they don't know. And that's how, I mean,
17:49
that's how I feel with colitis in general. Unless
17:51
you have it, you don't know. But I felt very
17:54
alone because everyone I thought was my friend,
17:57
no, I had maybe one person check up on me because
18:00
I ended up homebound for a semester. And so I
18:02
felt very isolated, very depressed because I
18:09
wasn't able to go cheer my games. I wasn't able
18:11
to go to any of my classes. And I did not have
18:14
a very good childhood anyway. And so that was
18:17
my escape from everything. And so I was kind
18:20
of just surrounded by what I was already trying
18:24
to escape. And so that was hard. And then I would
18:30
definitely say I was angry. I was angry at my
18:34
body. I was angry at... everyone around me, especially,
18:38
you know, being on prednisone, you know, you're
18:40
already irritable. But in the sense of, I was
18:43
angry because from what I had read, you know,
18:46
stress can sometimes play a part in, you know,
18:48
inducing a flare. And I'm like, well, if my family
18:51
didn't stress me out and then I probably wouldn't
18:53
be sick right now. And you know, when you get
18:54
diagnosed, you try to pinpoint every little thing
18:57
that could have caused this. And like I said,
18:59
also earlier, I was in denial. So I was kind
19:01
of like, I was fighting this thing in my brain
19:04
of like, this isn't really happening. And I'm
19:08
trying to figure out what the root is because
19:09
maybe I could try to fix it. And so I was feeling,
19:13
it sounds like gibberish when people ask me that
19:16
question because I've been asked that before,
19:18
how I felt. And I felt so many different things.
19:21
I felt angry, confused, you know, all the things.
19:27
And as far as the reason why I asked if I could
19:31
drop a curse word, I remember when I had got
19:32
back to school. because my social life, it was
19:35
not the same because I'm like, I saw how these
19:37
people acted whenever I was sick and I actually
19:40
needed someone to be there. And I felt like I
19:41
had no one. And I was in going into the last
19:45
year of school. So I kind of just like, you know,
19:47
chilled out, did my own thing at that point.
19:49
And I was known as the girl with the shit disease
19:51
because it was such a small town. And my mom
19:54
was friends with a lot of the people be like,
19:56
this is what she's going through. And of course
19:58
they would tell their, their, their kids, you
20:00
know, and those kids I went to school with and
20:02
I was known as the girl with the shit disease.
20:04
And so that kind of just left such a bitter taste
20:08
in my mouth, um, about that. And I, and I, it
20:13
sucks because people should not get bullied for
20:15
something they can't control. And I should not
20:17
be bitter about it all these years later. And
20:19
I try to think, well, they're kids and, you know,
20:21
like, you know, kids learn from their parents,
20:25
but you know, at the time it felt like it was
20:27
the end of the world. Because I had no social
20:30
life at that point. Exactly. Now, nobody should
20:33
go through that no matter what their age. Isolation
20:37
is something that I wanted to talk about. And
20:39
you said it yourself because of what happened,
20:42
because of where you lived. You sort of retracted
20:44
back into your own little bubble, into your own
20:46
world. How did you spend your time, especially
20:48
also being homebound for a semester? What did
20:52
you do during those times? How did you manage
20:54
your flares? Because there's, you know. 24 hours
20:58
in a day it's a lot of time but you know when
21:00
you're struggling it can sound or feel like it's
21:04
even longer very little sleep and a lot of time
21:07
in the bathroom for but um i um yeah um i there
21:13
was i'm not joking i had literally pinched like
21:16
pitched i'm trying to say the word uh but i basically
21:19
had my own little setup i and People thought
21:23
it was, people can think it's gross. I am OCD.
21:25
It was clean. I promise. But my bathroom floor
21:27
was clean. I had my pillow and I had my blanket.
21:29
I'm like, there's no point in me leaving this
21:31
bathroom because I was going, I remember at the
21:34
peak, I had counted it because the doctor wanted
21:36
me to count it up. I was going at one point almost
21:39
40 times a day. And people that are like, that's
21:42
not possible. It is very much possible. It might
21:45
not, you might not be on there the same amount
21:47
of time every time, but it's very possible. I
21:49
was living my life in the bathroom. and living
21:53
on very little sleep. Like I said, like I would
21:55
just sleep in between bathroom trips and just
21:57
lay in my bathroom floor because, and, and just
22:00
scroll on my phone. Cause I mean, what else was
22:03
I supposed to do? You know? Yeah. Yeah, exactly.
22:06
I, um, always referred to as my signature white
22:10
Ikea rug in my bathroom. That also became sort
22:12
of a, uh, a resting ground for me when, uh, when,
22:16
when I was in the thick of it, you're absolutely
22:18
right. There's a, I maybe managed to crawl from
22:21
the bathroom to the couch, but that was a distance
22:24
of just a couple of feet. So I can very, very
22:27
much relate to spending days like this. You mentioned
22:32
that you were pretty angry with your body, and
22:36
especially at 16, first of all, as a human being,
22:40
you encounter a lot of changes in your body,
22:42
especially as a woman, a lot of changes in your
22:44
body. How did you eventually sort of reconnect
22:48
with your body? Or do you still struggle with
22:50
your body today? I'm not saying that you sort
22:53
of gotten used to it, but how did you navigate
22:56
this sort of body image anger that you experienced?
23:03
I was very athletic before I got diagnosed. I
23:07
could... I'm going to brag a little bit. I was
23:10
a very fast runner and I'm a very short female.
23:12
So that's something that, you know, I was very
23:14
proud of. And I went from being able to run a
23:18
mile in like seven and a half minutes, which
23:21
again, I think is impressive for a short female
23:23
to I'm barely able to walk it in 30. And also
23:27
with the Predazone that makes you, I was on at
23:30
one point, I think a hundred milligrams a day,
23:32
which is. I don't think that should ever be diagnosed
23:36
for anybody. And I was on it for over a year
23:38
and a half, which that completely, I feel like
23:42
that wrecked my metabolic health completely because
23:45
I had gained over a hundred pounds, which I have
23:49
lost 72 of. And I am so close to getting back
23:53
to where I want to be. But I also know as a woman,
23:55
your body changes and not everything's going
23:57
to go back 20 or 16, but I had gained a lot of
24:00
weight. And I also started struggling with my
24:03
relationship with food a lot because, you know,
24:05
you're in that fight or flight mode with prednisone.
24:08
You're like, I need to get resources. I need
24:10
to eat. And you don't always need to eat. But
24:12
I didn't understand that. My parents didn't understand
24:15
that. And so I kind of started struggling with
24:18
issues with binge eating a lot because of that.
24:22
I do believe wholeheartedly that is connected
24:24
to it because I didn't have any issues with that
24:26
before. And thankfully, I am in a good place
24:29
now with my relationship with food and I know
24:31
how to manage it. But I would be lying if I said
24:35
that I was OK with my body now, because sometimes
24:38
I'm like, oh, my body's been through some things
24:40
and, you know, whatever. And it ebbs and it flows.
24:43
And but then sometimes I'm in the mirror looking
24:45
and I see stretch marks and I'm like, I haven't
24:48
even had kids yet. Why do I have stretch marks?
24:51
And I should have never had these stretch marks.
24:54
And it's not because I. It wasn't because of
24:57
a willpower thing. In my opinion, I was just
25:02
given this set of cards. And unfortunately, that
25:06
caused what it did to my body. But it's day by
25:10
day, honestly. So there's progress, though. That's
25:14
the positive aspect of this. And I always refer
25:18
to IBD as a blessing and a curse. And I think
25:22
it's pretty obvious what the curse part is. For
25:26
most people, it's the same. I'm curious to see
25:29
for you, even though you're still kind of in
25:31
the thick of it and you haven't really achieved
25:33
prolonged remission, at least not recently, is
25:37
there any blessing for you in living with IBD?
25:41
And also, how has colitis shaped you as a person,
25:46
has defined you as a person? I would say that
25:51
is a really tough question. First, I'll say that.
25:54
It's hard to see something like this as a blessing.
25:58
Because like you just said, the curse part's
26:01
obvious. But I would say without this diagnosis,
26:04
I probably would not be the person I am today
26:07
in terms of how understanding and empathetic
26:10
I am towards people. Because I didn't grow up
26:14
in a family like that. They were just kind of
26:16
very judgmental and rash. And I'm very, very
26:20
empathetic. Me going through what I did also
26:25
kind of pushed me to what I wanted to do career
26:27
wise. I have my bachelor's in psychology and
26:31
my master's in psychology and I'm getting my
26:33
doctorate in it because I want to do therapy
26:36
to just be that person that I needed when I was
26:39
younger. But without ulcerative colitis, I don't
26:41
think I would have ever had the push to do that.
26:43
And so I would say for me, that would have been
26:45
my blessing because I don't know what I'd be
26:47
doing right now. I have no idea. So, yeah. It's
26:53
not uncommon that, you know, people with IBD
26:55
or other chronic illnesses, by the way, sort
26:57
of choose a career path that at least touches
27:01
on one aspect of dealing with disease. I think
27:04
mental health is very often still in these times
27:08
forgotten. When it comes to IBD, and I feel like
27:12
a lot of IBD patients are left to discover this
27:15
or deal with this on their own. So great for
27:18
you, Dad, that you're heading into that direction.
27:20
And I'm sure you're going to be able to make
27:22
a difference in other people's lives. You mentioned
27:26
it. As a teen with this disease, you were isolated.
27:32
Friendship suffered. Has or is IBD affecting
27:37
relationships for you today? And when I say relationships,
27:40
that's really, you know, your family, friends,
27:45
romantic relationships. Is the disease right
27:49
now still causing you suffering as far as relationships
27:52
are concerned? Or has that sort of evolved into
27:56
something at least a little bit more positive,
27:57
a little bit more supportive? I'm definitely...
28:01
I don't have a ton of friends, but the ones I
28:03
do have are good ones. And that kind of goes
28:06
off of another question you had just asked me,
28:09
a blessing. If I never had ulcerative colitis,
28:12
I would never got on TikTok and I would have
28:14
never posted and I would never would have had
28:16
the connections I have now. And so some of those
28:18
people that I've made connections with are people
28:19
that I talk to every day now. We have group chats
28:22
and our little group chats are, we call it the
28:24
IBD baddies. And so we talk every day. And so.
28:29
the ones I do have they understand I'm more picky
28:32
about the people I keep in my life and then as
28:36
far as you know family I have to you know when
28:38
you have a chronic illness sometimes you have
28:40
to say no and set boundaries with people so there's
28:43
unfortunately some family members that I don't
28:44
have contact with anymore just because I notice
28:47
hey I stay chronically worked up when I'm around
28:50
them and that's not a reflection of me trying
28:54
to regulate myself like if they're truly making
28:56
me feel that way I don't need to be around them
28:59
And then as far as romantic relationships go,
29:03
I am married. I thankfully found somebody that
29:05
understands me because partners in the past have
29:08
not always understood it. And I don't expect
29:11
them to. Like I said, if you don't have it, you
29:13
don't know. But it kind of just fell perfect
29:19
with him as well. I'm not saying fortunately
29:24
as I'm glad, but his mom also has a chronic illness.
29:28
grown up his entire life knowing what that's
29:30
like so I didn't have to over explain him like
29:34
to him like hey this is some days I'm not going
29:36
to be okay he knew spoon theory and just described
29:40
it to me like hey this is what it is right and
29:43
I'm like exactly he's like okay well if you need
29:45
me to do this so you can get a shower let me
29:48
know and so he is a blessing so much um I ended
29:53
up very lucky because I would have not known.
29:57
I truly believe no one else would have been fit
29:59
for me because he understands me through and
30:02
through. So there you go. See, blessings. And
30:05
that's great. You mentioned a few in just this
30:08
answer. And that's great. Now, the only thing
30:10
we need for you is prolonged remission. And hopefully
30:13
it will happen. You mentioned TikTok. And I'm
30:18
just super curious to know how you actually ended
30:20
up there. Jumping on social media is one thing,
30:23
but actively talking about a disease that a lot
30:27
of people in your life have referred to as a
30:29
shit disease. This, by the way, could easily
30:32
scare somebody to talk about this openly. Yet
30:34
in your case, for some reason, it fueled you
30:36
to go out there and open up about it. How did
30:40
that come to be? Where did you find that courage
30:42
or that drive to say, I'm going to go on social
30:44
media, I'm going to put myself out there and
30:46
I'm going to talk about what I'm experiencing?
30:49
Well, and I was just telling somebody this this
30:51
morning when I was talking to them. I was like,
30:54
this sounds so weird for me to say because they're
30:58
like they they kind of get we were, you know,
30:59
FaceTiming and they're like, what do you mean?
31:02
I was like, I think I was meant to go through
31:04
this current flare. And they're like, what are
31:06
you talking about? And I was like, because I
31:08
would post very vaguely. Oh, I don't feel good.
31:11
Sometimes you have these things happen with chronic
31:13
illness, whatever. But. seeing how I was flared
31:16
up last summer and then I was in a period where
31:19
I was fine for a few months and then I got sick
31:21
so quickly back to back I think it just set something
31:25
off into me where I was like this is ridiculous
31:27
and I'm tired and I don't have anyone to really
31:29
talk to about it you know outside of my circle
31:31
and I was like I'm just going to be all open
31:34
with it because I cannot be the only person that
31:36
feels this way I cannot be the only person that's
31:38
like I'm so exhausted because I have spent today
31:42
getting seven sits baths because my tail hurts
31:44
or I have to go pick up diapers because you know
31:48
at this point like I don't know if I'm gonna
31:49
have an accident going on on myself at the grocery
31:51
store and so I was trying to take away some of
31:55
that one I was trying to use it as an outlet
31:59
for myself but also try to reach somebody else
32:01
because I'm like if I'm feeling like this surely
32:04
there's someone else that's feeling like this
32:06
I cannot be the only person and so I don't think
32:11
unless I had flared up this time that I would
32:13
have ever had the courage to be like, you know
32:14
what? We're going full out with it. I guess that
32:16
just that peak of like, this is honestly, I'm
32:19
going to be truthful. The beginning of the flare,
32:22
I would say was one of the worst up to the other
32:25
time that I was like talking about where I had
32:27
went to the bathroom up to 40 times a day. This
32:29
is probably second to that. Like this has been
32:31
a pretty bad flare. So that's, that's how I got
32:34
started on there. And then like, I didn't expect
32:37
people to relate to it so much and, and get inboxes
32:42
like, Hey, I don't have ulcerative colitis, but
32:44
my son does. And this helps me understand him
32:46
better. Or, Hey, I have ulcerative colitis too.
32:49
Does certain safe foods work for you? And, and
32:52
that's where the group chat also developed out
32:54
of this current flare. And so I didn't expect
32:57
people to take to it. Now, do I get comments
33:00
and trolls sometimes? yeah I had my first one
33:03
happen the other day and I made a whole response
33:05
video on on that and um and then even with that
33:09
with me being upset people were still like hey
33:10
everything you said I relate to that was very
33:12
deep it had me tearing up and so at this point
33:16
I'm like now I'm not going to shut up about it
33:18
because obviously it helps people and it it gives
33:21
them somebody to relate to if they don't have
33:23
anyone else if they're stuck in a small town
33:24
and nobody understands them so It's a growing
33:28
community, the online IBD community. And I think,
33:32
you know, people like you are driving sort of
33:34
that direction forward and it's helping a lot
33:39
of people. And I always say, if somebody messages
33:42
you with a question and you give an answer, you
33:46
give some advice and they thank you for it and
33:48
it makes a difference, then it's worth it. It's
33:51
all worth it in the end. So that's great to see.
33:56
As we sort of get to the end here, I would love
33:59
to pick your brain a little bit. And the key
34:01
word is advice, especially as someone who was
34:07
missing a very strong support from, let's say,
34:11
family and friends when you went through the
34:13
thick of it. What piece of advice would you have
34:16
for people, again, family or friends, who are
34:20
trying to support somebody with IBD, who are
34:23
loving somebody with IBD? Stop trying to offer
34:27
remedies because that's a big one. Because I
34:31
promise every herbal tea, every detox, every
34:33
juice that you think, we've already looked at
34:36
and tried. And if it worked, we would have been
34:38
cured. And so I've tried all that. Basically,
34:42
the best piece of advice is to just be there.
34:45
Understand that it's not that we're wanting to
34:49
be flaky. Some days we can do all the things
34:53
and other days we can't. But basically just be
34:56
there. Just sometimes let us just sometimes we
34:59
don't want advice. We just wanted to vent about
35:01
how we're feeling because we don't get that.
35:04
You know, a lot of people don't get that. And
35:06
so just to just listen. And and like I said,
35:09
just don't try to play doctor. That gets on my
35:11
nerves so bad. I hate when people are like, well,
35:14
I researched this and my friend's great aunt
35:17
did this and she was fine. I'm like, well, that's
35:19
great for her. You know, whatever. But. And then
35:22
just honestly, chronically ill people already
35:26
feel like a burden a lot of the time. So I would
35:29
also say check in with them because a lot of
35:32
the times they're not going to want to tell you
35:33
if they're feeling bad. I try to check on everybody,
35:35
but I'll be honest, I don't want people to try
35:37
to check on me because I feel like I'm bothering
35:38
them. And so, or I don't want to make it known
35:42
all the time. So that's something I still struggle
35:44
with is just trying to communicate when I don't
35:46
feel good. And so just checking in on them as
35:48
well. Not imposing yourself when they are not
35:53
in the mood. You know, I always say, when we
35:56
feel better, we will come to you, right? When
36:00
we want to talk, to chat, when we need social
36:02
interaction, we will reach out. And that's a
36:05
tough one for people sometimes to respect because
36:09
they feel the need or guilt or they'll feel regret
36:13
if they don't do anything or don't do enough.
36:17
Patience, sit back and let them come to you.
36:20
I think that's a good one to compliment what
36:22
you've just said. Knowing what you know now,
36:26
having experienced what you have experienced,
36:28
if you could go back in time and speak to your
36:33
younger self, you could speak to that 16 -year
36:36
-old girl who got diagnosed with ulcerative colitis,
36:39
what would you tell her? I think first I would
36:43
just sit with her for a second. Just let her
36:47
kind of just, you know, just sit with her in
36:50
it because she had no one to sit with her in
36:52
it. And so that would be the first thing. And
36:55
then outside of that, just letting her know,
36:59
one, that she's going to do great things with
37:01
her life, regardless if she has this. It isn't
37:05
the end of the world, even though it feels like
37:06
it. And most importantly, that she has to learn
37:09
how to say no. I wish I would have learned that
37:12
sooner because. I was in a way such a people
37:17
pleaser and you cannot be a people pleaser when
37:19
you have this. You have to learn how to say no.
37:22
And so that's something I wish I would have learned
37:24
earlier. So outside of just trying to comfort
37:26
her, be like, say no, you're not a bad person.
37:29
And your value ultimately as well. This is another
37:32
thing because I struggled with this for a long
37:35
time. If you cannot do all the things that you
37:38
normally do and you have to stay in the bathroom
37:40
and you're just... By definition, not a productive
37:44
member at the time of society. That does not
37:47
change your value. And you are still worthy.
37:52
You're still worthy. of sound advice and a message
37:58
of hope, a message of positivity. And that is
38:00
exactly how I like to end these episodes. We
38:03
need more hope and positivity in the world of
38:05
IBD. So Savannah, thank you so much for taking
38:07
your time and speaking to me and also sharing
38:09
your story. I wish you nothing but the best in
38:12
your clinical study. And I'm also very happy
38:15
that you found your purpose as far as your career
38:17
is concerned, because like I mentioned before,
38:18
I think you're going to... Help a lot of people,
38:21
potentially not just with IBD, but people who
38:23
are struggling with other chronic illnesses.
38:25
And also, it's great that you keep raising awareness.
38:28
So keep doing all of this. And my final wish
38:31
for you is that hopefully you won't really have
38:33
to experience many more days with 40 trips to
38:36
the toilet and sleeping on the bathroom floor.
38:40
So good luck with your IBD and everything. And
38:43
thanks so much again for being here with us today.
38:46
Thank you. That's it for today's episode of Kaleidos
38:50
Unfiltered. I'm Frank Tabering, and if this hit
38:53
home or hit your gut, do us a favor. Subscribe
38:57
to the show and follow us at Kaleidos Unfiltered
39:00
on YouTube, Substack, Instagram, Threads, TikTok,
39:03
and Reddit. We'll see you soon for more inspiring
39:06
stories from the bathroom floor.