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