I just look at life a lot differently now. I
think I'm very grateful for the times that I
do feel really good. But it has changed. Like,
a lot of my relationships have changed. A lot
of, like, the way I look. has changed. My hair
is a lot thinner than it was like a couple years
ago. My weight fluctuates like all the time.
Like I don't have a lot of energy anymore. So
just trying to like navigate those things can
be really hard because it's like I can't do what
I did when I was like 21 and I didn't have like
these issues. So just trying to find ways like
enjoy life, but in a different way now. This
is Kim, who got diagnosed with Crohn's disease
at age 26 in Atlanta, Georgia. In the beginning,
doctors dismissed Kim's symptoms as allergic
reactions, liver issues, and even IBS. Kim's
story is one familiar to many IBD patients. Years
of being misdiagnosed before someone finally
put the puzzle together. Today, she's sharing
the ins and outs of living with Crohn's and what
it's like to jump from one flare to the next.
This is Talking S***, presented by Colitis Unfiltered.
My name is Frank Tabering, and Kim, welcome to
the show. Hi, thank you so much for having me.
It's a pleasure. So Crohn's, let's quickly talk
about the timeline of your disease. So when it
started and then also what you kind of went through,
where you are today. Take us to your timeline.
This disease is honestly taking me through hell,
but I would probably say back in like 2022, I
actually, my first symptom was kind of like an
autoimmune rash, and I didn't know it at the
time, but it literally like exploded like all
over my face, and I didn't really think anything
of it. I just thought it was like an allergic
reaction. Went to the dermatologist. They were
like, yep, definitely allergic reaction, but
it just never went away. And then a little bit
after that was like all the stomach pain started
happening. I was like in and out of the doctors
all the time. And they could never tell me like
what was going on. They just said, oh, yeah,
you have IBS. And they're like, oh, but you're
also anemic. But you also have like IBS. And
I was like, OK, well, what can I do about that?
Because like I'm in pain all the time. Like what's
kind of going on? And it would kind of come like
in waves. So like there was a couple months where
I felt like really good. I could eat whatever
I wanted. And then there were some months where
I was just like. on like bedridden basically
and it was really really hard because I just
felt like I didn't really have anyone like listening
to all the pain that I was going through and
I finally went to another doctor they did like
an ultrasound and they said that I had like liver
issues and I was like okay I'm like 24 years
old at this point and I just turned 28 like a
couple days ago so I was like how could I have
liver issues at 24 like that actually sounds
insane and they're like yeah it's just mild fatty
liver just like eat clean and you can reverse
it and i was like okay and they're like yeah
and you're also anemic so just like take an iron
pill and you'll be fine and i was like okay cool
did that for a couple months reversed my like
mild fatty liver but i was still in so much pain
like stomach wise And again, it came in waves.
Like I was really good one month, really bad
another month. And I was like, what is going
on? I also lost like a dramatic amount of weight.
I was like 125. I went down to like 100 pounds.
Like it was just really bad. And then after I
like reversed my like mild fatty liver, like
I started eating a lot more. And again, like
I felt super, super good. And then early 2025,
I would say I was just like throwing up like
all the time. Like it didn't matter what I put
in my system, water, like soup, everything I
was throwing up. And again, I lost like a whole
bunch of weight. And I was also like in and out
of the bathroom, like all the time. I couldn't
eat anything, had horrible stomach cramps, like
everything. Went to the doctor, would have listened
to me again. It wasn't until my mom like pretty
much called them and was like, my daughter's
literally like dying. Like I'm about to take
her to the hospital if like you don't do something
about it. Got a colonoscopy done and then boom.
They diagnosed me with Crohn's and it's been
really hard. Like I wasn't on medication for
a really long time and I was just kind of like,
I guess in denial about like the whole thing.
I was like, this like can't be happening to me.
Like I'm super fit. Like I go to the gym all
the time. I eat really healthy. Like why is this
happening to me? And then I finally started medication
and like I am feeling a lot better, but there
are days where I just, again, like I'll randomly
throw up. Can't eat anything. Can't even stomach
water. It's just, like, such a process, I guess.
So, yeah. You mentioned the first, like, symptoms
that you had until you got officially diagnosed.
Months and months passed, right? Like, did you
just see, like, one doctor and it was, like,
oh, it's just the same doctor that told you,
oh, it's nothing, it's nothing, and you just
trusted that person? Or did you seek another
opinion? Or how did you navigate sort of, like,
the... the doctor -patient relationship and not
knowing what is going on and nobody really telling
you or trying to dig deeper, right, about what
you have. Yeah, I went to multiple doctors. Like,
I went to a primary care doctor. She just wrote
me off and was like, you need to go see the GI.
And I said, okay. Went to go see a GI. She was
like, oh, you're just anemic. You probably just
have IBS. Like, you're stressed out or something
like that, which is causing you to have, like,
all these stomach problems. And I'm like, okay.
Went to another doctor. I probably went to, like,
three or four before, like, one actually took
me seriously. And then even after I got diagnosed,
my doctor was like, yeah, you can eat whatever
you want. Just don't eat anything hard. Like
don't have like meat or like hard chicken or
like fried chicken and stuff like that. And I
was like, you're actually insane. I can't eat
anything. Like I can't even have like rice. Like
everything makes my stomach hurt. Like you're
not helping me at all. So that was the doctor
that actually diagnosed you with Crohn's. Yeah.
Yeah. And he was telling me, eat whatever you
want. Like, it's fine. And I was like, well.
I can't even drink water or have mashed potatoes
or rice or anything like that. So I really don't
know what you're talking about. And my mom was
like not having it. She like, I wouldn't say
she like cussed them out, but she was like, how
dare you basically like treat my daughter like
this? Like, this is all so new to her. It's all
like new to us. Like, how could you do this to
us? So yeah, we ended up finding another doctor
and yeah, it's been a process. Yeah, yeah, absolutely.
So right now today, You know, how are you feeling
generally? I have good days and bad days. I feel
like I have a lot more good days now just because
like I'm on Sky Rizzy and that's like the first
medication I started. And I started that like
February of this year. And so I do feel a lot
better, but I still get flares like almost every
month. And I'm still trying to kind of like navigate
like what's the main cause of it? Like, is it
food? Is it stress related? Is it like? I don't
know, just trying to like figure out what exactly
like the root cause of it is. But I'm like starting
to notice that like if I take too long, like
like throughout the day or if I'm like really
stressed out or really emotional, it like the
flares start to happen. So I feel better, but
I'm still not like 100 percent. When you're being
pulled into one of these flares, how did you
navigate them? First of all, like how long do
they typically last and what do you do? to sort
of protect yourself, apply some self -care? How
are you experiencing those flares? What are you
doing? How are you surviving those flares? That's
a really good question. I'm actually in a flare
right now, so it's funny that you say that. I
think before medication, my flares would last
like at least a week or more, and I would pretty
much just be in bed. like the whole day now it's
more like it'll last like a couple days and like
I'll slowly start to like eat again so just eating
like a lot of soft foods like my pantry is just
stocked with like cans of chicken noodle soup
so I'm like always prepared same thing with like
protein shakes and my heating pad is always next
to my bed I do castor oil packs like every night
so when I do get into a flare I do them like
more often like I'll keep it on like the whole
entire day and at night too And I just like rest
and just hydrate as much as I can and just like
trying not to stress myself out. I noticed like
during flares too, I will have like a lot of
anxiety. So I try to like keep myself like kind
of busy. So I'm not just like laying in bed.
Like, why is this happening to me? So like reading
or just finding anything to kind of like distract
myself and just like taking it easy. Like if
the only thing I did today was get up and take
a shower, that's like an accomplishment for me.
I think the heating pad is definitely resonating
with me because one of the things that I used
to do during my colitis flares is just heating
pad, comfortable blanket. And literally, I would
lie on a comfortable carpet even because it's
a little bit harder surface, you know, in fetal
position and then just rest, you know, like nothing
else matters. It's just getting through the pain.
So I can definitely relate to that. Now, going
back to your diagnosis. When the doctor told
you you have Crohn's, what went through your
mind? Have you heard of Crohn's before? Did the
doctor explain it to you? Did you have to go
and do your own research? Take me a little bit
through the process of moment of diagnosis and
what went through your mind. So it's actually
funny. I heard of Crohn's like a couple of days
before my colonoscopy because my mom is actually
friends with a nurse and it was like telling
her like what was going on. And the nurse was
like, oh, like she probably has Crohn's. And
so I looked it up and I was like, oh my God,
like this is the last thing. that I want and
I was like hoping and praying I was like I don't
care what it is I just really don't want it to
be this but of course like I just have bad luck
and I was still kind of like loopy like from
coming out of like my colonoscopy and they're
like yeah like she definitely like has Crohn's
and I was just like of course like of course
I have Crohn's like I just felt like super defeated
never even like heard much about it they were
just like telling my mom like it's hereditary
or it's caused by like environmental factors
and i'm like well nobody in my family has it
so i'm just like the unlucky one that got this
yeah yeah so we talked a little bit about what
you're doing while you're flaring but then when
you have periods that you're you're actually
feeling good you're coming out of the flare and
me for instance i've been lucky enough to be
in remission for a long time But every time,
for instance, for me, if I see a little bit of
like a difference in my stool or I have some
abdominal pain, there's this fear that creeps
into my head, right? Telling me, could this be
the next flare, right? Could this be the end
of my remission? So when you actually feel good
in those periods where you're not necessarily
flaring, how do you manage this fear of when
does the next flare show up? it's always kind
of in the back of my mind, you know, when I do
have periods of, like, feeling good. I think
I'm just so used to getting one, like, every
month, and I'm just like, okay, well, I know
it's gonna come eventually, so I'm just kind
of, like, anticipating it, which I feel like,
in a way, like, isn't good because, like, your
gut and your mind are very connected. Like, your
gut is, like, pretty much your second brain,
so I feel like just by me saying, oh, yeah, I'm
about to get one in, like, the next couple weeks
because I haven't gotten one this month, and
it's just, like, In a way, like, signaling, like,
my body, like, hey, like, we listen to you. Like,
words are powerful. Like, it's going to happen
if you keep saying that. So, yeah, I mean, it's
always kind of in the back of my mind. And I
try to be a lot more cautious about it now, but
it still, like, creeps up on me. What I'm hearing
is that at least when you're feeling good, you
have these thoughts. I guess it's almost like
a negative emotion, right? Because it's tied
to fear that is coming. And you tell me that,
well, then it's almost like you're sort of unwillingly
manifesting it and it might show up after. Are
you also experiencing it the other way around?
Let's say that if you're flaring or flare starting
and you try to, I don't know, apply positivity
or you're telling yourself, no, but I'm going
to beat this thing. Are you noticing maybe a
connection there as well? Or is it more like...
the negative thoughts or the negative thinking
that, that always wins. I feel like it's always
a negative that always wins. I do try to stay
positive, like throughout the thing. And I'm
like, okay, like, you know, today I feel a lot
better. Let me get up and, you know, at least
like, let me try to clean my room. Let me try
to at least do something. So I feel like it does
sometimes, like I am like positive about it sometimes,
but I don't think I've gotten to that point yet
where I've like. can fully grasp like my disease
because I'm still like so new to this like whole
thing and like I was undiagnosed for like three
years so this is like a whole new experience
for me but I am trying to like stay positive
and like hope that things will work out for me
like in the end but it's hard like when you're
not feeling good and you have stuff that you
have to do like I'm an adult like I have my own
apartment I have a cat like I have all these
things I have to do and then when I get into
a flare I'm like why is this happening how do
you think even though you're still early in your
diagnosis you've been experiencing at least symptoms
for a long time how do you think that Crohn's
is changing you as a person or has changed you
as a person already yeah I feel like it honestly
has changed like my whole entire life I just
look at life a lot differently now I think I'm
very grateful for the times that I do feel really
good and I'm just like happy when I feel good
and I just I'm like okay like this feels great
like I'm happy to be alive like even though I
have something that's like kind of debilitating
sometimes like I am just like grateful for every
moment that I feel decent but it has changed
like a lot of my relationships have changed a
lot of like The way I look has changed. My hair
is a lot thinner than it was, like, a couple
years ago. My weight fluctuates, like, all the
time. Like, I don't have a lot of energy anymore.
So just trying to, like, navigate those things
can be really hard because it's, like, I can't
do what I did when I was, like, 21 and I didn't
have, like, these issues. So just trying to find
ways to, like, enjoy life but in a different
way now. So, yeah, I would probably say, like,
everything about, like, my life has changed.
Some good, some bad. You know, I know my body
better than anybody else that's, like, technically,
like, healthy. So I guess that's also, like,
a good thing. And, like, food -wise, too. Like,
I can't really eat as much as, like, a normal
person, I guess. So, like, socially, like, body
-wise, physically, all the above. Like, my whole
life has basically turned upside down. Yeah,
I was going to ask you actually, you touched
on a few things that I wanted to mention as well,
but like how do you feel that Crohn's has affected
your body image, your intimacy, your relationships,
you know, have you seen this sort of like impeding
these things or in what ways has it or is it
having an effect on you? So I would probably
say like relationship wise, like it has been
a little bit hard, just like doesn't even have
to be like romantic. But I love my friends. My
life support system is amazing, but they don't
really understand what I'm going through. And
when I'm like in a flare or when there's like
something that I can't do anymore, it's kind
of like, oh, dang, but like you were able to
do those things before. And I'm like, yeah, but
it's different now. And I can't really do that.
and of course they're super understanding but
you know I'm just not the same Kim that I was
like a couple years ago and it could be a little
frustrating sometimes like oh I can't do those
things anymore like maybe they just like won't
want to hang out with me or things like that
but they've been very like gracious and amazing
like throughout the whole thing so I guess like
when it comes to meeting new people, like if
I want to make new friends or like if I want
to go on a date or something, I have to like
sit down and explain to them like, hey, I can't
like eat there because this is going to hurt
my stomach because I have like an incurable stomach
disease. And then I have to like sit down and
explain to them and like if I have to like cancel
plans with like a new friend because like I'm
not feeling well. So I think like my inner circle
understands, but meeting new people can just
be like a little bit harder, I guess. You say
your friends are supportive, but there's also
a certain lack of understanding. When you talk
to people about Crohn's, do you have a feeling
that they do at least understand what it is?
And also, and I think because when I talk to
a lot of people online, you know, that are not
really sure how to navigate this disease, they
always wonder, how should I approach this with
friends or new people that I meet? What would
you answer to them? on like how they should express
themselves and what they should say about their
condition that's a tough one um because it is
like a disease that a lot of like if you don't
have it yourself like You can't really explain
it to someone like I try my best to be like,
yeah, my flares literally feel like I have rocks
scraping my insides. And like, of course, they're
not going to know like what that feels like.
So I guess I would just kind of explain like,
you know, I'm going to have my good days and
I'm going to have my bad days, but my bad days
are going to be really bad. And like if you can't
accept and like understand that, then like we
have no business like being friends or like romantic
or whatever the case is, because this is something
that. you know you're gonna have like forever
even if you're in remission like you still have
it and so it's just kind of finding the right
words to like say I guess and just like letting
them know like I may not look like I have anything
wrong with me but I do and just because I'm moving
around and like doing all these things does not
mean that I'm not in pain so just for them to
be like more understanding about that. Who has
been your biggest supporter in this battle so
far and how have They helped you through this
disease. I would probably say like the online
community that I've like built like on TikTok.
Of course, like my friends and family like are
amazing and I'm not ever going to say that they
aren't. But again, it's very hard to explain
this disease to somebody that doesn't really
know like what I'm talking about. So I think
everyone that I've met. throughout like this
journey has been so like supportive and it's
so nice to be able to like rant invent talk about
medicine like all those types of things with
like people that just understand My roommate
is also amazing. She may not fully like understand
like what's happening, but she does try to like
be there for me like when I'm sick, especially
because like I lived with my parents like when
I was first diagnosed and my mom was always like
running to my room, making sure I was good, trying
to find like different ways to like help me.
And my roommate has kind of like taken that role.
And if I'm not feeling well, she'll make me like
a tea or she's like, you know, is there anything
I can get you? So I'm like really grateful to
have that. And also like the online community
like as well. And I'm sure your cat probably
as well, right? Yeah, she's a little spicy. But
yeah, I feel like she knows when I'm sick and
she won't leave my side when I'm, you know, going
through a flare or something like that. So I
love her too. See, there you go. You know, I
know that they can feel it when we're not well.
And even though they're buttholes sometimes with
their attitude and their character, I feel like
they sort of have this protectiveness, like they
want to protect us. Right. So it's good. Now,
let's talk a little bit about your presence online,
what you're doing, the awareness that you raise,
you're advocating for yourself and for others
with this disease. A lot of people really struggle
to talk about it and talk about it openly. And
yet here you are. And this is actually how we
connected because I stumbled across your profiles.
I was like, wow, you know, you're just really
out there and you don't have any filter. And
that's perfect. You know, I was like, I got to
talk to this one. So how did you find the courage
to do this? Did you just one day wake up and
say, you know what, I need to share what I'm
experiencing? Or was it like gradual? How did
you go from, you know, somebody who's really
suffering from this to sharing what you're going
through with the rest of the world? So I actually
used to be like a very like I didn't even want
to be like known online like posting a video
and just like listening back to myself I'm like
oh like I just don't want to do that like I just
I would post like little videos but I would never
speak I would never sit in front of the camera
like I would never do any of that and then I
think like when I got diagnosed like I said earlier
like I just feel like my whole perspective on
like life change and I'm just like you know life
is like too short I'm already sick I'm gonna
be sick for a long time even if I get into remission
like I'm still gonna have like whatever's going
on with me so I'm just like I might as well just
do whatever I want at this point like I don't
really care what anyone has to say about me like
I'm gonna post about this and that's it And I
didn't really expect it to like get to the capacity
that it is now because I do get a lot of messages
from people that are like, have you done this?
Like, have you done this? Like, oh, I've seen
your page. Like, you know, this is what I'm going
through. And like, it makes me feel good because
I'm like, OK, yes, I have this thing that's like
going on with me, but like I'm not the only one.
And I love when people reach out to me and I
love when people ask me questions because I feel
like I'm kind of helping in a way. And even though
like I'm not a doctor, I'm just like a girl that
has like stomach issues. I just. you know, I
just like doing it at this point and I just don't
really care. Like I just, I'm going to speak
my truth and whoever likes it, likes it. And
whoever doesn't, then like, it's fine. You don't
have to follow me or have to listen to anything
I have to say, but I just kind of have the mindset
of like, I'm going to do whatever I want in this
life because I already feel like a big part of
me is gone. So I might as well just make the
most of it at this point. You're talking as we
sort of slowly move to the closing, you are talking
to people, you are answering questions, messages
that people ask you online. So what kind of advice
would you have for friends and family who are
supporting someone with Crohn's but may not fully
understand it? What would you tell them? How
should they act towards that person? You know,
how could they best support a person with Crohn's?
I'd probably say the number one thing is like
be patient because they're going to have days
where they don't feel good and they might cancel
plans and they might, you know, like there's
just so much that comes with this. And I don't
think people really, again, like people don't
really realize like what we go through. So I
just think being patient and understanding like
where they're coming from and just because they
look okay does not mean that they are. So probably
be patient. Ask them questions, like, let them
know that I'm here to support you in, like, whatever
you need. Like, can I bring you soup? Can I take
you to your doctor's appointments? Can I take
you to your infusions? Like, anything to kind
of let them know that you're supportive. Because
even if you don't understand, I feel like that
would make a world of difference. I know my friends,
like when I first got diagnosed, they were sending
me like articles. They're like, oh, you should
take like these supplements. Like even doing
things like that just like makes me feel good.
And like I'll have friends that are like, oh,
like they're doing this research study like on
Crohn's and they'll like send it to me. So just
like little things like that, like kind of doing
your own research on the disease itself. like
taking them to like finding supplements like
food that they could probably eat like you know
if we're gonna go out to eat or something and
they're like gluten and dairy free just being
like considerate you know just like oh they can't
eat here but like maybe we can eat here so i
would say definitely being patient and like considerate
of the person because their whole life like just
changed they they don't need to be dealing with
all these external factors when they have like
an internal war going on like in their body you
said something that i absolutely believe to be
a very good and that is for them to do their
own research as well, to educate themselves first.
And then I always say, while this is a really
great tactic and it's a really great sign of
support, just be careful that you don't overdo
it and that you don't necessarily force the knowledge
that you discover onto the patient either, right?
Yeah. Because we might just not be receptive.
So it's just, you know. Take whatever you learn
by yourself with a grain of salt. I think offer
the help. And then when we are ready to accept
it or to take it. And we will let you know. Right.
And we'll go along with it. So, yeah, no, that's
really great. That's really good. I would wait
for all that research talk after they've like
marinated in the fact that like they have it,
because I know that when I was first diagnosed,
like my family, especially, they're like, well,
you can do this and you can do that. And I'm
like, honestly, I don't want to hear it. Like,
I don't even want to have this. Like, I don't
want to hear it. I don't want anything to do
with this. But now I'm a little bit more like,
OK, like hear them out. So, yeah, just wait for
them to like grasp that they have the disease.
then share all the research and things like that
exactly exactly give them some time some space
I think that's that's the winning formula and
then letting them know that whenever they're
ready they can just come to you and and they're
there for help so showing up I think that's really
like a strong part yeah that's really cool so
we talked about the past we talked about the
present now and I would always like to end with
the future and this is a question that might
be extremely difficult to answer But I do believe
that everybody who is going through IBD has some
sort of an idea or at least a wish. Do you think
that in our lifetime we'll see a cure to IBD?
I would love to see that. And I don't see why
not. I feel like medicine has definitely come
a long way. I'm in like in a support group on
Facebook. And there are people that have been
diagnosed for like years. you know, since they
were like my age, like long, long, long time
ago. And they've said like, you know, medicine
has come a long way. So I don't see why not.
I feel like if they're doing like the research
like behind it, I don't see why there couldn't
someday be a cure to this. I don't know if it
will be in my lifetime, but I would still love
to be able to see it if it is, but it would be
nice. it absolutely would be i always say as
well i don't necessarily think that it's going
to be in my lifetime but the one after I think
they're getting or they will get much, much closer.
Yeah, that's true. So we'll leave with a message
of hope and see what happens. Well, Kim, thank
you so much for taking the time to talk to me
today. I really enjoyed learning about your struggles
and also about how you're doing right now. The
only thing I can say to you is keep doing what
you're doing with your online presence. And I
hope that your treatment continues to be effective
and really hope for you that. the number of flares
will decrease and the number of good days will
increase. So thank you so much for being on the
show. It was a pleasure. Thank you so much. Thank
you so much for having me. That's it for today's
episode of Talking S***, presented by Colitis
Unfiltered. I'm Frank Tabering, and if this hit
home or hit your gut, do us a favor, subscribe
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