Latest / Crohn's & Colitis Unfiltered / Childhood IBD, Surgery and an Ostomy: Kristin’s long road forward

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Childhood IBD, Surgery and an Ostomy: Kristin’s long road forward · Crohn's & Colitis Unfiltered

0:01
Every challenge that I have endured, every time
0:05
that I have not wanted to get out of bed, but
0:07
I get up and put on clothes and put on makeup,
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it has been worth it. Every single day is a gift.
0:16
I could have at nine never imagined all of the
0:20
amazing blessings that would have come from a
0:25
diagnosis like this. This is Kristen. who got
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diagnosed with ulcerative colitis at just nine
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years old in Cleveland, Ohio. Growing up with
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IBD meant hospital stays, missed schools, failed
0:38
treatments, and learning far too early what it
0:41
means to live in a body that doesn't cooperate.
0:44
Kristen's journey includes multiple surgeries
0:46
and ultimately living with a permanent ostomy.
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Today, she shares what struggles and successes
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led to an IBD life worth living. This is Talking
0:56
S***. presented by Colitis Unfiltered. My name
1:00
is Frank Tabering, and Kristen, welcome to the
1:02
show. Thank you, Frank. Thanks so much for having
1:05
me. I'm really excited to be here. So let's dive
1:08
right in. Age nine, you were a child. As far
1:14
as you can remember, because it's been a while,
1:16
can you take me a little bit through how the
1:18
symptoms first started to manifest? And also,
1:22
I'm assuming, well, your parents noticed that,
1:24
hey, something is wrong here. Let's have this
1:27
checked out by medical professionals. How did
1:30
it all start for you? Yeah, so this was 1985.
1:35
And again, I was nine years old. It was a little
1:38
bit after Easter. So April of 1985. And my initial
1:43
symptoms were very watery diarrhea, a lot of
1:47
urgency, stomach aches. I was running a fever.
1:52
So, of course, my mom initially thought I had
1:54
like a GI virus and I was taken to the pediatrician's
1:57
office. Pediatrician said, oh, well, you know,
2:00
maybe she has dysentery, which, you know, traveler's
2:03
diarrhea, which. was laughable because I'd never
2:05
really even left the city that I lived in, let
2:08
alone gone out of the country. So don't know
2:10
where I would have gotten that. But they put
2:12
me on some antibiotics and I didn't improve.
2:15
And that led to us doing a colonoscopy. about
2:21
a month later. At the time, in 1985, this was
2:25
when Ronald Reagan was president in the United
2:27
States, and he had had a colon cancer scare.
2:30
So all over the nightly news, everyone was talking
2:33
about if you have blood in your stool, if you
2:35
have change in bowel habits, you could have colon
2:38
cancer. So I remember the day that blood appeared
2:42
in my stool as I was having these symptoms, and
2:45
I was terrified. I thought, oh, for sure, I have
2:47
cancer. And as a nine year old, I my immediate
2:50
thought was, how am I going to tell my parents
2:52
that I have cancer? So I hid the fact that there
2:55
was blood in my stool. And I remember the day
2:58
that my mom found me in the bathroom on the toilet
3:01
and I was crying and she's like, you know, what
3:03
is wrong? What is wrong? I said, I'm bleeding.
3:06
And I showed her and she, of course, started
3:09
crying, too. You know, and at that time, we didn't
3:12
know what. ulcerative colitis was. We didn't
3:15
know what Crohn's disease was. We didn't know
3:17
that those were even possibilities. So of course
3:20
it was terrifying for our whole family. I ended
3:24
up having the colonoscopy and before I even got
3:27
off of the table, the doctor had called my parents
3:30
and told them, your daughter has ulcerative colitis.
3:33
I was immediately... admitted to the hospital.
3:37
I was that sick. This had been, you know, almost
3:39
six weeks of this going on. I had lost so much
3:42
weight. I was so anemic, very dehydrated, very
3:45
malnutritioned. So I was admitted to the hospital
3:49
and I was there for the next 87 days. So obviously
3:54
the world was a lot different back then. First
3:57
of all, you were very young. Then there was no
4:00
internet, not really any resource that you could
4:05
look at what it was that you had or find more
4:08
information about the disease that you were diagnosed
4:10
with. So if you remember, how did your parents
4:15
approach the term ulcerative colitis with you
4:18
or the doctors? How did they explain it to you,
4:21
if they really explained it to you at all? It
4:24
wasn't explained to me very well. All I knew
4:28
is that my colon was sick and it was bleeding
4:31
and I wasn't allowed to eat because eating was
4:35
going to make it worse. So I was on TPN in the
4:38
hospital. I was told that this was something
4:41
that could be forever, but I didn't have an understanding
4:44
of what. chronic meant. I thought that once I
4:49
got out of the hospital that I was going to be
4:51
better and that it would not, you know, affect
4:53
my life moving forward. You know, my parents,
4:57
again, there was no internet. So given this term,
5:00
ulcerative colitis, I think the doctors explained
5:02
it to them as best as they could. We were given
5:05
a pamphlet for something called the National
5:07
Foundation for Iliitis and Colitis, which was
5:09
like the precursor to the Crohn's and Colitis
5:11
Foundation here in the States. But other than
5:14
that, we weren't really given a whole lot of
5:16
resources or education. I was, like I said, in
5:20
the hospital for almost three months, and I don't
5:23
recall a lot of conversation being made about
5:26
my actual diagnosis. There was a lot of talk
5:28
of symptoms. There was a lot of talk of how we
5:31
were treating it, which was high -dose steroids,
5:34
total bowel rest, TPN. But in terms of having
5:38
a good understanding of the nature of ulcerative
5:42
colitis being related to, you know, an inflammatory
5:46
condition, autoimmune. None of that was discussed
5:50
with us in a manner that I could understand at
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nine. And I don't think that my parents had any
5:55
clue, the broadness of what ulcerative colitis
6:00
or, you know, inflammatory bowel disease as a
6:02
whole could encompass for the rest of my life.
6:07
Post -diagnosis, you just mentioned it. You stayed
6:10
in the hospital for a long time. You talked a
6:11
little bit about the treatments. Now take us
6:13
through how this progressed, you know, the following
6:16
years, between nine and basically what happened
6:22
next. So what happened next, I was discharged
6:26
from the hospital about three months after diagnosis.
6:30
I was on very high dose oral prednisone. went
6:34
home. I was in the third grade, so I missed the
6:39
remainder of my third grade year, returned to
6:42
school in the fourth grade, and did so again
6:47
on high -dose prednisone. That was the only treatment
6:49
available at that time. There was azolfadine,
6:51
which was a 5 -ASA medication, an aspirin derivative.
6:56
And steroids. So steroids was what I was on.
7:00
I was steroid dependent for quite some time.
7:03
I had the big moon face. I gained almost 60 pounds.
7:07
So when I went to school, of course, my appearance
7:10
was very different. My classmates all wanted
7:14
to know, you know, where were you? Are you contagious?
7:17
Why do you look like this? They nicknamed me
7:21
Cabbage Patch Doll, which was like the popular
7:23
toy at the time, which it was a small doll, but
7:27
it had very large, you know, puffy cheeks. So
7:30
that was kind of traumatic as a kid. But I lived
7:34
from age nine until I was 15, just going through
7:39
like yearly flares. My disease would always flare
7:43
in the fall, like right when school would start.
7:46
And then it would always flare in the spring
7:48
when the seasons would change. And I know that
7:52
I'm not the only patient who experiences that
7:54
as well. When I was, how old was I? I guess I
8:00
was about 14. I had a particularly bad flare
8:06
of the colitis and again was placed on prednisone,
8:10
high doses. I was a freshman in high school.
8:15
It was a totally different beast at that time
8:18
from being nine years old and being very dependent
8:23
on my parents and what they thought and looking
8:26
to them for help and guidance to now being a
8:29
teenager and wanting so desperately to fit in
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with friends and not be different and not be
8:36
sick and not miss out on activities and school
8:40
things. At that time, they put me on high -dose
8:44
prednisone, and I was on it for a good nine months.
8:47
And that's when we started talking about potentially
8:49
having some surgery. Now, you mentioned absence
8:53
from school was sort of one way of how this disease
8:57
or living with the disease manifested in your
8:59
life. Ages 9 to 15, it's quite a crucial time,
9:04
right, as you move slowly into young adulthood.
9:06
So again, before sort of the term surgery got
9:11
tossed around, How did you as a child navigate
9:14
this part, you know, physically in one way, we
9:18
talked about it, but also mentally? As I started
9:22
to understand the chronicity of what was going
9:25
on, that like this was not going away, this was
9:28
going to be something that I had to learn to
9:30
deal with. That was because those years are so
9:38
crucial to self -esteem. to autonomy, those types
9:44
of things. It impacted me really greatly. I felt
9:48
very different from my friends. I felt as if
9:54
even teachers and my parents' friends, everybody
9:58
kind of looked at me as if I was broken, treated
10:02
me with kid gloves. You know, mental health,
10:07
particularly in children, was not talked about
10:09
at that time. I remember a time when I was in
10:13
the hospital again, you know, for those three
10:16
months, I was on total bowel rest on TPN. I was
10:19
not allowed to eat. I couldn't even have ice
10:20
chips. And I became very fixated on food because
10:25
to me, that was the most traumatic part of being
10:28
in the hospital was that I wasn't allowed to
10:29
eat anything. So they had child life specialists
10:33
at the hospital. I spent a lot of time in sort
10:36
of what they called the child life room. There
10:38
was a stove in there and I would bake. That was
10:42
like a form of therapy. They helped me bake cookies
10:44
and cakes and things and the other patients got
10:47
to eat them and I did not. I would cut out pictures
10:50
of food from magazines and glue them or tape
10:54
them to pieces of construction paper, and they
10:57
were plastered all over the walls of my hospital
10:59
room. You know, once I was discharged from the
11:02
hospital, I remember going to birthday parties,
11:07
sleepovers for friends, and having to bring my
11:09
own special milk. And if pizza was being served,
11:12
I had to take the cheese off of it and, you know.
11:16
Those dietary changes were very traumatic as
11:18
a kid because, again, you just want to fit in.
11:21
Missing school, never knowing if I was going
11:24
to feel well enough to participate in whatever
11:26
it was that was coming up for school, you know,
11:28
whether it be a field day or a field trip or
11:31
something like that. Never once at that age were
11:37
we offered the opportunity to meet with like
11:39
a child psychologist, which I think is just a
11:42
travesty. And I'm so glad that that is not the
11:44
case now. But, you know, so it was kind of me
11:47
and my own coping mechanisms. And admittedly,
11:50
they weren't the best. I was a very noncompliant
11:55
teenager. often would not take my medicine and
11:59
I would do things like hide it in plants and
12:01
told my parents I had taken it. It was kind of
12:04
my form of rebellion, but I think also my way
12:07
of sort of trying to punish my body because it
12:15
wasn't doing what it was supposed to do. It was
12:17
kind of a self -destructive type thing. I didn't
12:19
understand it as that at the time. But looking
12:22
back and having done therapy as an adult, I very
12:25
much now recognize that that was part of what
12:27
was going on. You were not old enough to understand
12:30
that it's okay to be angry at your body, but
12:32
then also not forget that having your body is
12:35
giving you actually the opportunity to fight
12:38
back, right? Or to do whatever you can physically
12:41
to fight this disease. Yeah. Okay. So you basically
12:44
were left to... I remember. Right. Yeah. I was
12:48
very angry. And it wasn't until I was well into
12:52
early adulthood, I think I was 19 years old,
12:56
and that was the first time a health care practitioner
12:59
gave me permission to be angry about what was
13:03
happening to me and what had happened. And that
13:06
moment in time, I remember it like it was yesterday.
13:09
It totally changed the entire trajectory of my
13:13
life. my way of managing and accepting my disease.
13:18
Because as a child, I was very much told, you're
13:23
strong, you can do this. You know, I became everyone
13:26
else's sort of inspiration porn. You know, everybody
13:29
would talk about, oh, she's so strong. And internally,
13:34
you know, I internalized that and that became
13:36
my mantra. I'm strong, I can do this. And because
13:41
of that, I never made my emotional needs known,
13:45
never would talk to my parents about how I was
13:48
feeling, never would admit that I was scared,
13:52
that I was broken inside and didn't have even
13:58
the vocabulary at that young age to really name
14:02
the emotions, just knew that inside of me was
14:04
like a swirling tempest, but I kept suppressing
14:08
it because I was strong. That's what I was told.
14:10
I was strong. You can do this. You have to fight.
14:12
So a change of mindset kicking in around the
14:16
age of 19, but there's a little gap here that
14:18
we haven't talked about yet, right? Between ages
14:20
14 and 19. So can you take us briefly through
14:24
that period? And you mentioned it before, surgery,
14:27
right? At 15, again, freshman in high school,
14:31
I... I was in the doctor's office and that was
14:35
the first time the word surgery was mentioned.
14:38
And the surgery that they were talking about
14:40
was going to be a J pouch. So an internal reservoir,
14:45
ileal, anal pouch and astimosis. And with the
14:49
caveat that I would have a diverting ostomy as
14:52
that was formed and healed. And then I would
14:55
wear the ostomy for about three months and then
14:57
they would connect the J pouch and I would go
14:59
to the bathroom normally. I remember very much
15:02
thinking, this is it. This is my answer. You
15:06
know, I'm 15. I'm on steroids. I can't live the
15:10
life that I want. They're offering me a chance
15:14
to be better. And I begged my parents. I said,
15:17
please let me have the surgery. And my parents
15:20
were very much of the mindset that they were
15:23
hopeful that, you know, at that time, There was
15:26
some sort of research break, you know, right
15:29
around the corner. There was going to be a new
15:30
medication that was somehow going to help me.
15:33
Something was going to happen and nobody was
15:35
going to have to cut on their baby girl. And
15:38
I very much pushed for surgery. I just wanted
15:44
to be better. And if I had to wear an ostomy
15:47
or a bag, as I would call it at that time for
15:50
three months, I was more than willing to do that.
15:52
Now, mind you, I'd never seen an ostomy. I'd
15:54
never talked to anybody who had an ostomy. So
15:57
when they're telling me you're going to be wearing
15:59
a bag on your side, I mean, I literally pictured
16:01
like a grocery bag right here on my side, like
16:07
not even on the front of my abdomen. But I was
16:09
so desperate to be normal as a teenager. I was
16:13
more than willing to do that. And at age 15,
16:17
I went in, had a total colectomy and a J -pouch
16:21
formation and a temporary diverting ileostomy.
16:24
The moment they took that disease colon out of
16:27
there, and I was told afterwards that it was
16:28
a good thing that I chose to have elective surgery,
16:30
because had I not, I probably would have had
16:33
emergency surgery a month or two later because
16:35
I was very close to toxic megacolon. So I immediately
16:39
felt better. My body felt better. I can't even
16:42
describe it to you. It just was different. Like
16:46
you don't realize how sick you are until you're
16:49
not sick anymore. So what for me, it was such
16:55
a dichotomy because up until surgery, I was very,
16:57
very excited about this and very looking forward
17:00
to being well and getting back to my life. And
17:03
then afterwards, very sharp change in my mood
17:08
and my sense of hope. I was very, very blessed
17:16
that a special nurse came into my life and really
17:19
impacted the way that I started to see things
17:22
and helped me become accepting of having an ostomy,
17:27
albeit temporary. You know, that to me, that
17:30
was the caveat that, well, I can learn to do
17:32
anything for three months. And then the spring
17:36
of my sophomore year of high school, started
17:39
developing really bad back pain, high fevers.
17:44
And, you know, nobody could really figure out
17:47
what's going on. Long story short, I ended up
17:50
in the hospital and they did some exploratory
17:54
surgery, discovered that the J pouch had developed
17:57
a small leak at the site of the anastomosis or
18:02
where it's connected to the small bowel and the
18:06
rectal area. And I had a very large abscess that
18:09
had grown around my coccyx and had cost them
18:14
osteomyelitis or a bone infection. So they gave
18:20
me another diverting ostomy so that that could
18:23
all be cleaned up and cleaned out. I went home
18:26
that summer on IV antibiotics, was able to finish
18:30
school for that year with a tutor at home. And
18:33
then by that August, Everything had kind of cleared
18:37
up. We went back in, reconnected the J pouch.
18:41
And I did pretty well from that point on until
18:44
I was a freshman in college. And then I was dealing
18:50
with constant pouchitis. I had developed another
18:54
leak in the pouch. And I was young. I was a teenager.
19:01
I had not yet learned that. this was going to
19:06
be chronic, right? I think that that is such
19:09
a hard thing for people to understand, especially
19:11
when it happens young, that this is something
19:13
you're going to have to learn to manage for the
19:14
rest of your life. So at 19, in college, still
19:21
very much trying to punish my body. I did not
19:27
live. a great lifestyle for someone who was chronically
19:31
ill and had health issues to manage. So long
19:35
story short, I got home on a Tuesday evening.
19:38
And by that Thursday, I was in emergency surgery
19:41
and woke up, had an ostomy. My dad was there.
19:50
We manage things with humor in my home. So, you
19:53
know, my first question was, do I have, do I
19:56
have a bag? And, um, he said to me, he's like,
20:00
well, he's like, the good news is you have an
20:10
ostomy. And I'm like, well, what that that's
20:13
the good news. I don't understand. I said, what's
20:17
the bad news? And he said, well, the bad news
20:18
is the breast implants didn't take. So, you know,
20:22
at 19, that was a. You know, that was funny.
20:28
But I, you know, at 19, thinking about, like,
20:35
is this now going to be permanent? And that was
20:37
my first question for the surgeon was, is this
20:39
going to be permanent? And he said, well, you're
20:41
going to have it for a while. And I said, well,
20:43
how long is a while? And he said, well, how long
20:45
is a piece of string? And I thought, okay, you
20:49
know, like. I need to know. I need to have a
20:55
mindset of, you know, what's next? What do I
20:58
have to worry about? So long story short, it
21:00
did become permanent. And at that time, that
21:05
is when someone from the medical field finally
21:09
gave me permission to be angry and upset. And
21:13
I remember exactly what she said to me. She said,
21:15
you are very angry and you are punishing your
21:19
body. She said, I want you to know it's okay
21:21
for you to be angry. She said, but what you do
21:23
with that anger is going to determine how you
21:26
live the rest of your life. And that was the
21:30
moment. You know, there had been moments up until
21:33
then. I had, as a teenager, attended a camp for
21:37
kids with bowel and bladder diseases and disorders
21:40
and ostomies. And I'd made friends there like
21:43
myself. It was the first time I'd ever met another
21:45
teenager who struggled with what I struggled
21:48
with, who had chronic health issues. That was
21:52
life -changing for me. But that's only once a
21:56
year. So when I would come home, then I would
21:59
fall back into... destructive behaviors and being
22:04
very angry at my body and not accepting and learning
22:09
that this is the only body I get and I've got
22:12
to learn to treat it with kindness and take care
22:17
of it. Yeah. So you woke up around age 15 after
22:22
your first surgery feeling this sense of relief.
22:26
However, that relief didn't last very long and
22:28
you never really had a chance at a regularly
22:32
normal life you know with your jay pouch clearly
22:35
so at that point then around 19 you know when
22:40
you when you've finally had the ostomy and you
22:42
knew it was going to be permanent was that the
22:44
moment where you actually started to have a normal
22:49
life your normal life back or to start a new
22:51
life and and and then has it ever since then
22:55
with your ostomy you've been living with it this
22:58
way until now, or any other sort of setbacks
23:02
or challenges that you experienced? Lots of challenges
23:07
and setbacks since then. So the ostomy became
23:09
permanent at 19. And that was sort of the eye
23:13
-opening moment that like... okay, this is permanent.
23:17
This is going to be for the rest of my life.
23:20
I, of course, had all kinds of questions about
23:22
what was that life going to look like? Am I going
23:25
to date? Am I going to get married? Am I going
23:27
to be able to have a child? What about a career?
23:29
All of those things. And one of the ways that
23:34
the disease affected my life was that I didn't
23:37
get to finish college right out of high school.
23:40
When I came home from school that second year
23:42
and had emergency surgery, it was a time where
23:47
my parents were going through a pretty tumultuous
23:50
divorce. And what happened was that my dad ended
23:54
up dropping me from his health care insurance.
23:58
So as someone who was 19 in school, needed ostomy
24:02
supplies every month to be able to live, was
24:06
on medications. Being at school, being able to
24:10
afford school and being able to navigate it without
24:13
health care insurance was was not an option.
24:16
So I didn't return to college that year, but
24:18
I was able to find a job at the hospital that
24:22
I had worked at or had had all of my treatment
24:25
at. I was able actually to work on the very same
24:28
floor with all the nurses who had taken care
24:31
of me. So I worked as a nurse's aide and that
24:34
was. That was really key to my healing as well.
24:38
I think being around other young patients and
24:42
helping to take care of them, you know, sort
24:43
of my way of giving back was very therapeutic
24:46
and cathartic for me. And that was transformational
24:50
in terms of reconfirming to me that I eventually
24:54
wanted to be a nurse and in caring for them and
24:59
learning to take care of these kids as a nurse's
25:03
aide. It helped me learn how to take care of
25:05
myself. So I was working at the hospital. I met
25:11
someone who eventually became my husband. We
25:15
did eventually have a baby, even though I was
25:19
told that that was not going to be possible.
25:23
I did have a baby. She's 22 now. That was sort
25:28
of my little miracle moment. My body that had...
25:33
had constantly let me down and I felt like had
25:36
failed me for that nine -month moment in time,
25:40
it really kind of did what it was supposed to
25:43
do. And that, again, I think also was huge in
25:46
me learning to treat myself with loving kindness
25:52
and to value what my body could do instead of
25:56
focusing on what it hadn't been doing for years.
26:00
My bowel disease at that point was in remission,
26:03
and I haven't really had a flare of bowel disease
26:08
since then. Now, I was re -diagnosed with Crohn's
26:11
disease after I went back to the ostomy, and
26:15
we did some more testing on the J pouch that
26:17
was still there in my pelvis. I was diagnosed
26:21
with Crohn's disease, which explains why the
26:23
J pouch did not work. So that was always kind
26:26
of in the back of my mind that, OK, I've got
26:28
Crohn's disease. I'm doing really well. But it's
26:31
always kind of a sleeping giant in my life, you
26:34
know, never knowing if it's going to rear its
26:35
ugly head. Most of my complications since then
26:40
have been sort of IBD adjacent. So having the
26:46
ostomy. And having had so many surgeries with
26:50
the J pouches and ostomy revisions, I started
26:54
to develop hernias. So I've had a couple, well,
26:58
not a couple, I've had a lot of surgery to repair
27:01
either ventral hernias, so along my old incisional
27:05
line, or peristomal hernias around the stoma.
27:08
I have had two rebuilds of my abdominal wall.
27:14
So once with cadaver tissue and once with mesh
27:17
which is what I have now. So lots of complications
27:20
in that terms but not necessarily Crohn's disease
27:25
directly. I do still battle the extraintestinal
27:32
manifestations of inflammatory bowel disease.
27:34
So over the years, I've had bouts with pyoderma
27:38
granganosum. I've had uveitis in my eyes, lots
27:42
of different skin issues, hydradenitis, you know,
27:46
all sort of directly related to inflammatory
27:49
bowel disease. But miraculously, my small intestine
27:53
has been good and I've not had any actual bowel
27:56
disease for close to almost 30 years. At least.
28:02
Yeah. At least that. You've at least been given
28:05
that gift. At least that. Being able to manage
28:08
that, right? And also managing your Crohn's that
28:12
came on top of the colitis diagnosis. So you
28:15
really almost, to put it in an almost funny way,
28:19
you did it all. Yeah, I have. I always laugh,
28:25
you know, working where I do at the hospital.
28:30
My co -workers often say to me, they're like,
28:32
well, when they learn my story and know how much
28:35
I've been through, they're like, well, you don't
28:37
look like you've gone through any of that. And
28:38
I'm like, well, good. That's good. I don't want
28:40
to look like I've suffered all that trauma. But
28:43
I do find it interesting and almost, to me, a
28:47
blessing that, you know, when I come in contact
28:49
with other patients. I've experienced a lot.
28:52
So I have, you know, I can speak into their journey
28:55
and hopefully offer some wisdom and advice along,
28:59
you know, to help give them some comfort. And
29:02
yeah, so yeah, lived through a lot, but I'm still
29:06
here. And that, you know, I remember when I reached
29:11
age 40 and I had just a day where I just cried
29:15
because I never thought that I would see 30 years
29:18
old. Sorry, 40 years old. And I am now three
29:22
weeks from my 50th birthday. And every single
29:27
day is a gift, even with an ostomy, even with
29:29
other health challenges. Every single day is
29:33
a gift. If we have someone whose IBD journey
29:40
is not going very well, who might be facing surgery
29:43
or certain to face surgery, but who's very afraid.
29:47
of not just having a surgery, but then also living
29:51
a life with an ostomy. Just very bluntly, what's
29:57
your message to those people? My message to those
30:02
people is that it's okay to be angry. It's okay
30:07
to be in a place where you're not sure if you
30:10
can accept what's going on with you or what could
30:13
happen to you. But like was told to me, you know,
30:17
your mindset and what you choose to do with that
30:19
anger is going to be instrumental in whether
30:21
or not you recover and go on to live the life
30:25
that you dream about. There is nothing that you
30:30
can't do with an ostomy unless it's self -limiting,
30:35
you know, unless you tell yourself that you can't
30:38
do it. It won't be easy. I won't lie to you and
30:41
tell you that it will be easy. But I will tell
30:45
you, find yourself a support system. Meet other
30:47
patients. I cannot stress enough meeting patients
30:53
like yourself, whether you're going to have surgery
30:54
or whether you're dealing, you know, strictly
30:57
with inflammatory bowel disease or any other
30:59
kind of chronic condition. Meeting people who
31:02
understand and you have that instant camaraderie
31:04
is really key, I think, to rehabilitation. And
31:08
that is one of the things that I have said all
31:10
along is that. Initially being able to meet someone
31:13
who we had this immediate, there wasn't a need
31:17
to explain. There wasn't a need to, you know,
31:21
there was no presupposition. We just went into
31:23
the situation where we knew that. we would support
31:27
each other, that that's what we were there for.
31:30
So, you know, find your tribe, meet some other
31:33
patients like yourself that you can commiserate
31:38
with, but also support and lift up. You know,
31:43
giving back is huge in terms of healing. I think
31:48
for me, it has been instrumental. I know for
31:50
so many other patients. The ability to take something
31:54
negative and turn it into a positive makes a
31:57
huge difference in your mindset and how you feel
32:01
when you get up every morning and decide what's
32:05
my day going to look like. If I can in some way
32:08
use something that is negative in my life or
32:12
that I have overcome to help somebody else do
32:14
the same, I think that's why we're all here,
32:18
right? We're all here to lift each other up and
32:20
to kind of, you know, walk each other through
32:22
this life. Disease or not disease. I think here
32:28
it's pretty safe to say, if you can do it, you
32:30
know, after everything that you've went through,
32:32
which is definitely, I'd say, not the norm, I
32:35
think then other people can at least find inspiration
32:38
to listen to your stories, look at your story
32:40
and say, okay, she's been through this, so I
32:44
can at least... try and manage what I'm going
32:47
through as well. So that's your message to others
32:52
out there struggling with IBD. To bring it full
32:55
circle, I'd now be interested to know from you,
32:58
and I kind of have a hunch of what you might
33:03
say, what you're going to say, but if you go
33:05
back to that nine -year -old who tried to hide
33:09
her symptoms from her parents, and if you could
33:12
go back in time, what would you tell? You make
33:17
me cry. I think about her a lot. You know, I
33:21
have thought about her over the years. And I
33:24
think now is, you know, like I said, I'm about
33:27
to turn 50. And having never thought that that
33:30
I would make it to this age, I would just encourage
33:34
her and tell her that it's not going to be easy,
33:41
but it's going to be worth it. You know, every
33:45
challenge that I have endured, every time that
33:48
I have not wanted to get out of bed, but I get
33:51
up and put on clothes and put on makeup, it has
33:54
been worth it. Every single day is a gift. And
34:00
I would tell her I'm sorry that she didn't get
34:04
to have a childhood. but that later in life people
34:08
will help her work through that and that she
34:10
gets to have such an amazing adulthood using
34:14
her experiences to help others along their journey.
34:21
Yeah, I could have at nine never imagined all
34:26
of the... All of the amazing blessings that would
34:30
have come from a diagnosis like this. So I just
34:34
want her to know that she is strong. You know,
34:38
she is that strong girl that everybody told her
34:41
she had to be. And that she goes on and she does
34:47
good things. Good things come from the bad. And
34:52
frankly, that nine -year -old girl would go on
34:55
to... become a very resilient human being and
34:59
persist as well so with that kristen i want to
35:04
thank you so much for taking the time to open
35:05
up and share your story i think there's a lot
35:08
of inspiration to extract from here and again
35:11
this word resilience gets tossed around a lot
35:15
these days but i think this is definitely also
35:18
truly a story of of resilience and persistence
35:20
so i really do believe that people who listen
35:23
to this, people who watch this will be able to
35:26
draw a lot of inspiration, you know, and sort
35:28
of dive deeper into their own, well, IBD miseries
35:32
and find the strength to still, you know, continue
35:36
to look for the light at the end of the tunnel
35:39
and then hopefully also find it. So for you,
35:42
I can only tell you, I wish you the best moving
35:44
forward. And thanks so much for being us here
35:46
today. It's really been a pleasure. Good luck
35:48
to you. Thank you so much for having me. I really
35:50
appreciate the chance to share my story. And
35:53
I hope that someone finds it impactful. And like
35:57
you said, I don't want anybody to compare themselves
35:59
to me or my journey. And I fully recognize everything
36:03
that you are going through and how it impacts
36:08
your life. But I want to offer that encouragement.
36:11
And I hope that my story has done that. That's
36:14
it for today's episode of Talking S***, presented
36:17
by Colitis Unfiltered. I'm Frank Klebering, and
36:20
if this hit home or hit your gut, do us a favor,
36:23
subscribe to the show and follow us at Colitis
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36:33
inspiring stories from the bathroom floor.