I believe that having an ostomy for IBD patients
does help more than getting an ostomy for different
conditions. It gives your bowel a break from
where the inflammation is. It's a lot of transitioning
and practice required with getting an ostomy,
but it is totally okay to do anything that you
were doing before. after surgery with an ostomy.
There's nothing that I can't do that I do now
that I didn't do before I had an ostomy. This
is Leah, who got diagnosed with Crohn's disease
at age nine in Swansea, Illinois. Leah's IBD
experience is one of transformation, from dealing
with vicious symptoms as a child to navigating
multiple surgeries and eventually seeking a career
as an ostomy nurse who guides her patients to
the very journey she herself has and is living.
Leah proves that an existence reshaped by Crohn's
can be full, meaningful, and joyful. This is
Talking S***, presented by Colitis Unfiltered.
My name is Frank Tabing, and Leah, welcome to
the show. Hi, thank you for having me. Well,
it's a pleasure. So we briefly talked about your
journey, but what I always like to start these
by going into the past, right? Moving on to the
present and then into the future. So let's start
with the past and tell us about your diagnosis.
Tell us how it happened and maybe start with
the first symptoms. Whatever happened that you
noticed that there was something wrong and how
those symptoms then launched to the diagnosis
and the rest of your journey. So I was diagnosed
when I was nine. I actually had a bout of food
poisoning prior to my diagnosis. I feel like
kind of kick -started some things. I think it
sent my immune system into overdrive. And then
after that, I was having symptoms of fatigue,
bloody diarrhea, just overall just weight loss,
not feeling well. I became very pale. I was brought
to the hospital in actually St. Louis Children's.
That was actually in Missouri, but we were very
close to it. And I was so afraid of the doctors.
So they did one test and I was like, I'm never
going back. My parents were very nervous to bring
me back to the hospital because I made such a
fuss of it. of it. And then since we didn't follow
up, my dad was in the military at the time and
we were actually stationed in the Netherlands.
So we left to go to the Netherlands and due to
the stress of being in a new country, new food,
new environment, my condition went into overdrive
again and I started having my first player. We
had a lot of... doctor visits in the Netherlands
because I was so tired that I just kind of gave
up on going back to the hospital. And that's
where I started seeing Dutch doctors that put
me on Remicade infusions. And then I was still
having some symptoms and needed to do like bowel
preps and stuff. So that's when I got my first
NG tube as well. The Remicade worked for about
five weeks and then My next dose was less and
less. I was having still the same symptoms. So
we actually went to London at the time to talk
to other doctors, get a second opinion. And they
were the first ones that brought up surgery as
a potential intervention in the future. My parents
got nervous. We ended up flying back to the States
for a third opinion from military doctors. And
in that process, I underwent treatment for two
weeks, had IVs, had NG2, couldn't eat, I was
having endoscopies, colonoscopies. And that eventually
led to like a definitive Crohn's diagnosis. And
my eighth grade year in middle school, I actually
ended up getting my first ostomy due to some
of the medication not working. And I went through
high school, college, and eventually led to having
my large intestine removed when I was 18 after
several medications. And I've actually been great
ever since. So this is great. You're feeling
amazing. That's what we want, right? But it's
definitely been a journey for you. So you touched
on a lot of things that I would love to follow
up with, but going back to the diagnosis, and
I guess in your case, you had sort of almost
several diagnoses, right? Going back to maybe
the one that stuck in your head the most or that
maybe moved you emotionally the most, how did...
Did the doctor break the news to you? And also
sort of what went through your mind, not really
knowing much about the condition that you had,
right? Yeah, I think being that young, it's really
hard to wrap your mind around a diagnosis like
that, especially since, you know, going to the
bathroom is such a private part of our lives.
I hated all the medical procedures that I had
to go through, but it was kind of a dramatic
and emotional experience of... this is what's
presented to me this is what's happening to me
I kind of have to just do what I need to do I
kind of let my parents figure out a lot of it
but it was really just I was hurting I would
tell my parents the doctors would tell them what
to do I would go in for testing and I would kind
of sit with it and I absolutely did not love
it when I was that age but it was something that
I was like okay well It's either this or I feel
bad. So it was a lot to take in, but it was something
that I was like, okay, like this is, I kind of
just accepted as like, this is what life is.
This is what it's going to have to be. So a lot
of different emotions. Looking back now, would
you potentially argue that it was maybe better
for you to be at such a young age because you
didn't have that knowledge, right? Or you had
your parents more as guides and really helping
you out? Oh, absolutely. I tell people all the
time that I am so fortunate that I got diagnosed
at a young age, especially now I see kids that
get diagnosis that bounce back really easily.
Kids are way more. And they're way more moldable
to be able to go with the flow at that time because
the parents do handle a lot of that stuff. So,
yes, I would agree that being diagnosed at such
a young age and also getting an ostomy at such
a young age was definitely a blessing. And this
leads to my next question. Surgery at a young
age, ostomy at a young age. How did you navigate
those moments, those years, the teens, right?
Such a crucial point. And yet there you are.
looking basically a little bit different, feeling
a little bit different than others. What was
that period like for you, especially also during
those crucial teenage years? I was a loner for
most of those years. I tried my best to be social
and I wanted so badly to be normal. But there
was times where I just gave in to how my body
was feeling and I would stay home. I missed a
lot of dances and school. I missed a lot of like
hanging out with my friends. it just took so
much out of me that I was like, I just, I can't.
And I don't want to show up and not be present.
Even now, like if I'm not feeling well, I will
cancel before I go out and try to bring the mood
down. But yeah, during my flares, it was, I just,
I wanted to be alone. I was a very suffer in
silence kind of person and I had to just ride
it out. There was nothing, you know, it's your
body. There's nothing really that you can do.
So it was just laying low until I felt better.
And your friends, Again, because of this young
age, were they able to understand what you were
going through? Were they able to sort of cope
with knowing that you, their friend, is experiencing
this? Or was there also a certain distance because
of what you were experiencing? I definitely think
there was some people who were kind of like,
okay, she's just doing whatever. But at the time
when I had my... most severe flare and I left
the Netherlands there was a lot of people who
knew that I was sick and they they cared for
me they they sent a lot of like kind of goodbye
messages and saying like hey you know I hope
you feel better in the states and then when I
move back to the states there was a lot of people
that are like what's going on with her because
I wasn't super open about it at the time so I
think it was 50 50 those people who were close
to me I had like one or two friends that I'd
be like this is what's going on and then others
would kind of know something was going on but
otherwise They would continue with their lives
as you would. So it was hard to accept that adjustment
and know that not everyone's going to be able
to stay with the pace that I'm at. So it was
an adjustment in every period. So you mentioned
not being very open about it at that time. Obviously,
as humans, we get older, we get wiser. What changed
in you that you started opening up about it more?
Was it a specific period in your teens? Was it
a little bit later? Was it an event? Was it just
getting older, pulling in more experience in
life? What was it that helped you transition
from being kind of closed off to being so much
more open about it today? It was definitely when
I got my first ostomy when I was 13. When after
I got my first ostomy, I felt so much better.
I shot up in growth. My nutrition got better.
I got color back to my face. And since an ostomy,
it can be very private, but since it was so open
and it was something that made me feel so much
better. I was like, okay, well, this is on my
stomach. It's going to be seen at some point.
Like I feel so much better. Like I can do so
many things. I joined my middle school and high
school dance team. And just from there, I was
kind of like, well, I feel better. I'm glad I
have this. So if anyone wants to know about it,
like that'd be cool because maybe someone else
is going through the same thing that I'm going
through and surgery is very daunting. So I was
just, I started being very open about it when
I started feeling better after my first ostomy
surgery. Great, yeah. And that happens to you
at such a young age, so it's actually pretty
inspiring that, you know, at age 13, you not
only have to go through the whole process, the
surgery, the recovery, living with it, but then
it sort of helps you to, I guess, actually maybe
mature even faster than most people or other
people, right, around the same age. So that's
great. At least that's a good positive thing
that came out of that. You had the first surgery
pretty early. One thing that always comes up
when I talk to people that are maybe newly diagnosed
or that have been sort of on medications that
are not necessarily biologics, they always have
this worry about, oh, what if the medication
doesn't work? Yes, but there is a lot of options.
So you mentioned you were on Remicade earlier,
but it really sort of failed after weeks, you
said. Were you on other treatments? Did the doctors
not want to put you on other treatments? Did
you feel like they were not proactive enough?
Or did they just tell you, listen, oh, Remicade,
it failed after five weeks. So there's no bother
even trying anything else. Like how, what happened
with your treatments or other treatment options?
I think it's a little different for me at the
time because I was living in the Netherlands
and I think the language barrier. And the fear
of this new diagnosis was hard on my parents.
So that's why we got so many different opinions.
Remicade at the time was the first line drug
for IBD, to my knowledge. And we did, I mean,
we did try it a couple times after that. But
even after our re -infusion, I never got better.
So when we came back to the States, well, actually,
when they first mentioned surgery back in London.
My parents freaked out. Every parent would freak
out if their child had to get surgery. But we
went back to the States and they put me on an
NPO diet, nothing to eat, and let me be on bowel
rest. And then they're like, okay, well, there's
certain things that we can do because surgery
is, again, sometimes a last resort. So they ended
up putting me on Humira injections. I was on
methotrexate injections. I was on different pills
prior to the Netherlands as well. I wasn't on
them for long. And then even after my first surgery,
I was on several injections after that. So I
did try several different medications. But again,
the bliss of being ignorant as a child, I kind
of was like, okay, I'll do this. Okay, I'll do
this. Whatever my parents were like, okay, well,
we need to try this. I was trying whichever,
but it wasn't until... later on that i've been
on the same drug but yes i did trial many medications
but i guess the fear wasn't there yet of like
oh this doesn't work because i was running through
so many things that i was kind of like okay i've
accepted that this is such a big transition that
i'm just kind of have to go through trial and
error so that was a period where i'm assuming
you you were flaring and your symptoms were pretty
bad or got to the worst possible stage that you
were in. Now, you said you were more of a loner,
an introvert, and I think that may have helped
you deal better with sort of the isolation, right,
surrounding the symptoms of this disease. I always
say this helped me as well. I was actually comfortable
being alone. But nonetheless, again, you were
younger. So how did you, in what ways did you
deal with this isolation? Or did it not bother
you at all? I think with this condition, I mean,
I wasn't always I wasn't a quiet child. I wasn't
always reserved. But I did enjoy my alone time
when I was sick because I didn't have to explain
it to anybody. I didn't have to do anything requiring
exertion. I got really into art. I painted a
lot. I did a lot of drawings. I really turned
to artwork because that is such a solo thing
that you can do. There was singing and dancing
videos that I would do in my room alone and have
it post them on social media embarrassingly.
But I enjoyed those times away because I could
I could put how much effort I wanted into it,
but still have some kind of interaction. I could
show people my art. I could show people the dancing
and singing videos. But when I wanted my alone
time, you know, I could post it. I could show
people and then I could be like, OK. I'm not
doing anything else. But I think it definitely,
having a chronic illness has stunted me socially
and emotionally back then. And it was hard to
keep up with people my age. So I did turn to
artwork and singing and dancing on my own. But
eventually, once I started feeling better, I
was able to catch up and kind of do more physical
things like joining my dance team, but taking
it at my own pace. Obviously, people, adults
knew that I had a condition at that time. So
I was kind of just do whatever I needed to do
to feel better. So you basically were spending
that little energy that you had on yourself and
yourself only, right? Which is what I would say.
the selfishness that we need when we are flaring
or we're in a bad condition. So what's interesting
about your story is that you passed through many
physician's offices, specialist appointments.
And I always say that for somebody with active
disease, or even when you're in remission, that
sort of a connection or relationship with a gastroenterologist,
especially, is extremely important to have somebody
who's proactive. Is this something that you actually
ever experienced, seeing all these different
doctors? Or did you at one point have a doctor
that you could stick with, right, and build that
kind of a relationship with? Or not really? I,
after the Netherlands, when I was brought back
to the States, we did go to Walter Reed Medical
Center that is near me now. And the pediatric
gastroenterologist that took me on at the time,
he was a fellow. So in his last year before he
was in attending, he really took a strong hold
of my case. And we, I mean, I. How often that
I saw him and how difficult my case was when
I was presented to him. We grew such a connection.
I was very resistant against him because I was
a child. But even now, I still have a strong
connection with him. He was a pediatric gastroenterologist,
so it was difficult when I did have to transition
to adulthood and no longer have him as a doctor.
I'm not going to lie, it has been kind of difficult
as an adult to establish a connection with a
gastroenterologist at this age. I think that
I have found one that has been communicative,
but I definitely don't see them as often as I
did my pediatric gastroenterologist. And I think
that's just how I'm learning. That's how things
work. But I do think it is important to at least
have yearly checkups with your GI. And if you
can establish that rapport. I think it will take
more from the patient on that part, especially
as an adult. But it is good to have someone that
knows your case, especially if it is something
that you've dealt with for a long time and have
gone through several medications. So great. I
think that was a pretty good summary about what
you went through. Let's transition to today.
Earlier, you mentioned you're feeling great,
but I would love for you to delve a little bit
deeper on this. Tell me today. How are you feeling?
I'm feeling good. You know, there's still that
deep -seated fear of, you know, one day I might
not feel good. I am currently on one medication
that has been helping me for a couple of years.
And back to your original questions earlier,
there is a fear that it will stop working. And
I still hopefully have so much life to live that
there are different complications that can come
up. But right now, how I'm feeling day to day
is amazing. I couldn't have asked for a better
turnout, but I'm hoping to continue that. You
touched on something very briefly there, and
I would like to go a little bit deeper there
as well, because there's certain misconceptions
around ostomies as well that are like, hey, once
you have surgery, you're cured. You don't have
an intestine anymore. There's nothing to worry
about. But that's not always the case. So you
mentioned your medication. Can you quickly...
Take us through why you are on that medication.
What is that medication? And then at the same
time, also talk about what your current challenges,
if any, you have living with an ostomy. So after
I had a total colectomy when I was 18, and that's
mainly because my disease was in that portion
of my intestine at the time. So we thought if
we got rid of the colon at the time that my disease
would. kind of mellow out. Unfortunately, that
did not happen. Since I do have Crohn's disease,
it can happen anywhere from the mouth to the
anus. So I did develop disease in different parts
of my digestive tract that was left. So I did
have to go back on medication after my total
colectomy. I'm currently on Humira injections.
I think it's adalimumab is the actual term. I'm
on injections every other week. They have been
working for the diseased parts of my bowel that's
left. And I've been on it since 2018, I believe.
I've heard that people have been on it for years.
I've also heard that it has not been a drug of
choice for other IBD patients. And then personally
for me, a different story, having an ostomy.
I do believe that having an ostomy has helped
my condition immensely, but I do have IBD friends
that don't have ostomies and they still have.
an incredible life. They still feel great as
well. I was just that lucky that I got an ostomy.
But the challenges I think nowadays for having
an ostomy is my disease process is more focused
on having an ostomy because they can be you know,
a little more difficult to handle on top of already
having a chronic illness. So I think my day -to
-day actually focuses more on my ostomy care
rather than my IBD because my IBD is kept at
bay luckily right now by my humor injections.
So if somebody is potentially facing surgery,
potentially facing ostomy, and they're scared,
they're worried, what would you tell that person?
I would tell them that it's going to be okay.
I believe that having an ostomy for IBD patients
does help more than getting an ostomy for different
conditions. It gives your bowel a break from
where the inflammation is. I don't think that
it's a sole intervention. I do think in my case,
I did have to go back on medication, but it is
a day -to -day thing. It's a lot of There's transitioning
and practice required with getting an ostomy,
but it is totally okay to do anything that you
were doing before after surgery with an ostomy.
There's nothing that I can't do that I do now
that I didn't do before I had an ostomy. So it
doesn't limit you at all. It is an adjustment,
but it does not limit you. That's great. So you
just mentioned what... sort of impact this has
on your life. Now I would like to know what sort
of impact this has had on you. In other words,
what you went through with the Crohn's, with
the surgeries, the ostomy. How has this changed
you as a person over the years? I definitely
think this condition has made me humble. I've
definitely been humbled to the fact that life
can change very easily and I can be in pain one
day and not pain in the other. I think I've become
very empathetic with those who are going through
the same thing, especially having to go through
multiple medications and then ended up needing
a surgery. I'm still greedy and needy how normal
people would be in some light, but I do take
those moments and see a different side of things
because I know that Life is not always black
and white. There's going to be some areas where
you're not going to be able to give your all
every day. And that may not pertain to just IBD
patients. That's generally how everyone is day
to day, that there's something that someone else
is going through that you have no idea. They're
having silent battles of their own. So I definitely
think that gave me perspective having this condition
that no one's normal. Everybody has something
that. is going to knock them down sometimes.
And I think that we need to accept people for
who they are and what they can give with a grain
of salt and know that, you know, no one has control
over what happens to them, you know? So I think
it's just giving me a different perspective overall.
I always refer to, or in my case, my IBD as a
blessing and a curse. Based on what you just
said, thinking back, How do you relate to that?
Well, I could not agree with you more for the
same reason. For obvious physical conditions,
it's a curse. But for the emotional and social
aspect of it, it is a blessing. I think being
humbled is not necessarily a negative thing.
I think that it is. helpful to, especially in
my line of work right now, to be able to relate
and not know any struggles in life. I think knowing
the struggles and being able to go through some
of the hardships has molded me into the person
that I'm proud of today. I don't think that if
I didn't go through any hardships or struggles
with this condition, I could be a completely
different person. And I like the person who I
am today. So I'm thankful for the experiences
that I have, regardless of what I went through
to get there, if that makes sense. Oh, absolutely.
It really, really does. And you touched on it.
You touched on what you're doing today because
it's very heavily involved with sort of the ostomy
world. But before we get to that. In your answer
now, you mentioned the social aspect really quickly.
So I do want to go back into the past one more
time, just because I'm interested to see how
you navigated this. With what you went through,
again, through this crucial period of teenage
years, when most people, you know, they go dancing
to clubs. I mean, you did it in your room. Great.
You know, they date, you know, they have sort
of, they go through that natural stage of adolescence
and moving into adulthood. You had a surgery
at 18. So how has this affected this aspect of
growing up, like relationships, body image, right?
In what ways has this impacted you? And how did
you live those moments at those different ages?
Yeah. Well, from a very young age, when my condition
was at its worst, I was pooping my pants. Like
outright, I was going, I was, I could not hold
it. My condition was so bad that it was just,
I was running to the bathroom all the time. So
body image wise, there is definitely things that
I had to think about before going anywhere. Like,
OK, well, maybe I shouldn't eat that. Or is this
going to affect me? Where's the nearest bathroom?
I think that was such a major part of my life
that I had some social anxiety of like, if I
were to poop my pants, where can I run to first?
Like, what clothing should I bring? And then
later on, when I got my first ostomate was. oh,
like, are people going to be able to notice it
through my clothes? Am I going to be able to
sit down crisscross? Or, like, general day -to
-day stuff, like, that you don't second guess,
I guess. I was thinking about, like, how are
people going to view me? And even today, I'm
still, how are people going to view me? But I
think it came with time and exception that okay,
maybe people don't notice my ostomy. People don't
notice my stomach gurgling. People don't notice
how often I'm going to the bathroom. And if they
did, it was kind of like, well, I don't know.
I've dealt with it for this long. People go to
the bathroom. I kind of just accepted like everybody's
poop stinks. Everybody goes to the bathroom.
I just go a little bit more. And then I guess
romantic relationship wise, I was very private
initially. It wasn't until later in life that
I did share. more of that stuff because I feel
like in relationships, that is one of the harder
things to talk about is intimacy and toileting.
But over time, again, with the other things,
I kind of just adjusted to it is what it is.
Everyone pooped and pees. Everyone goes to the
bathroom. People wear different clothing. It
doesn't mean that you're you know, less than,
more than, anything like that. So it took a lot
of exception on my part to be comfortable with,
one, my condition and how my body image was,
but it did take time and it did take a lot of
reassurance as well, even today. Reassurance
is great for me, but having those people that
do reassure you in your life and acceptance that,
like, It is what it is. It definitely helped
me get through most relationships in my life.
So just listening to this again, yes, absolutely.
This is not necessarily dinner talk, but, and
you said poop, which was, you know, very, very
nice, but it's okay. This is a podcast so we
can use explicit language. It's true. Everyone
shits. Everyone shits. And that's just the lesson
here, you know? I mean, again, no need to talk
about it all the time, but it's completely fine
because everybody can relate to it. So it's okay.
So I don't want to, with my next question, I
don't want to spoil it. So I'm going to let you
answer it because not only do you live with an
ostomy, but you really carried this through into
your professional life. Tell us what you do today,
what that entails. And most importantly, I would
love to know how did you get into that field?
What made you want to do this? Well, I am a certified
ostomy nurse and I have been for... In this role
about a year now, working as an ostomy nurse.
Prior to this, actually, I was a GI nurse working
in endoscopy. So both sides of the condition.
I think it's not hard to conclude that my condition
and my ostomy led me to want to work with patients
that have these conditions. I think it's very
fulfilling and rewarding to come in contact with
other people that are like me. Again, that's
the reassurance part. enjoy seeing patients that
have kind of gone through what I've gone through
but I ever since I actually had my first GI nurse
in the hospital I've been like that's what I
want to do like I want to be her and she was
this little Filipino lady who worked in a big
military hospital and she was so blunt um and
at times I did not like her for that but it definitely
shaped me into what I wanted to do. So I got
my bachelor's in nursing. I made a plan. I was
like, I'm going to do this by this time at this
date. I knew I wanted to be in the GI field,
but since I had an ostomy, I was leaning more
towards ostomy patients who don't necessarily
always get an ostomy for IBD reasons. I worked
as a nurse for one year. I actually went into
endoscopy and worked there for two years. Absolutely
loved it. Loved the procedural part of it. And
then went back to school to get my certifications
for wound, ostomy, and continence nursing. And
then I ended up getting a job at my hospital
working with inpatients from neonates to geriatric
population who have ostomies for... A plethora
of reasons, but it's been very rewarding and
very fulfilling. And so right now in your current
position, take us through a day in the life of
Leah. What is it that you do? What are your responsibilities?
So as an ostominer, I do have like a list of
patients. Believe it or not, there are at least...
two patients getting an ostomy a day. So we will
have ostomy patients that are straight out of
the OR, day one post -op, who we have to go and
say, hey, this is your life now. This is how
you live with an ostomy. And so we see patients
from post -op day one up until they're discharged,
and we teach them the basics of ostomy care,
how to live day to day, how to change their bag,
how to empty their bag, how to adjust their diet
and hydration around having an ostomy. And we
see them up until discharge. And then unfortunately,
I don't get to see the post -op, but there are
patients every day that I see or I see in the
future that come back and they're like, yeah,
I'm dealing with it just fine. It ended up being
no big deal. There's definitely patients that
don't handle it that way. And it is very hard.
I did have one particular patient that was did
not have an ostomy for IBD reasons, but nevertheless
was a huge change in their life. And I think
the connotation around ostomies is so negative,
usually, that it is an even bigger adjustment
when you have that already that mindset to having
an ostomy. But he made such an incredible turnaround
on being able to help people accept this as part
of their life and their day to day and say, hey,
like, it's you can take a break. Like, this is
a lot of information. This is a lot that you're
going through. You have other things to worry
about. But we're for this hour, we're going to
focus on this. And then continue your day to
day. So it's really just a lot of emotional support
as well as physical and like educational support.
That's really great. And in connection to that
earlier, I asked Leah, the patient, to sort of
offer some words of advice to people that might
face an ostomy, right? Or that, you know, just
had surgery. I'll ask you this again, but slightly
different now as Leah, the professional. When
you see people with ostomies, there's leaks sometimes,
there's skin irritations, rashes, frustrations
that pop up left and right. And sometimes I think
it really affects people from a mental point
of view as well. What words of encouragement
do you have for people sort of navigating daily
struggles with ostomies? That's it's a it's a
big feat for sure, because everyone's different.
Everyone handles things differently. I kind of
do it the personal way of things. I don't openly
share about my ostomy unless it's appropriate.
Like at least I if I know that they're mentally
there to accept that information, I will tell
them. But I tell them without telling them. I
know that this is a lot. I know that you're dealing
with a lot of things and a lot of things are
happening, complications that you weren't expecting
coming with an ostomy. But there are ways to
mitigate these things. There are ways to treat
these things. And if the patients are in the
hospital long enough, we can teach them a lot
of things. But basic ostomy care those first
few days after surgery. is just knowing how to
protect their skin, knowing how to prevent leaks
and knowing how to keep a pouch on. It is very
fast, but I would let patients know that there's
so many resources out there, IBD population or
just ostomy population. So many people, including
myself, like do different things that are out
of the norm, but that work for them. So professionally,
I say it's a lot. I know, take a breath. I acknowledge
that it is a big thing and is a big adjustment
in your life to accept. But this is your life
now. And we do have to focus on what is going
on right now. So it's kind of like a tough love
thing. Like, I get that this is a lot for you.
But this is what we got to do. And the sooner
that they accept it, the better. It does take
longer than others. But it is just kind of a,
you're going to be okay. that this is how life
is going to be right now. And sometimes people
don't have ostomies permanently. Some get them
reversed. So we don't try to bring that up because
that might be false hope. But if we can, we kind
of shed a little bit of light on the future.
So you're spending your days in and out basically
offering guidance to patients. However, there's
a whole population out there that is not... necessarily
physically affected by ostomies or by IBD however
they are supporting someone with IBD or an ostomy
they're in love with somebody who has an ostomy
or IBD what kind of advice do you have for friends
for family members for partners supporting someone
with IBD or someone with an ostomy there was
a very good article that my mom sent me very
while back when I was like teenage years, that
covers how to love someone with Crohn's disease.
So specifically my condition, but IBD in general.
And a lot of the article touched on a lot of
people will suffer in silence. There's a lot
of things that they will want to do for themselves.
And although they may look like they're struggling
doing it, sometimes, as we've talked before,
it is a comfort. for that alone time to figure
things out for yourself so i think if you love
someone in your life or caring for someone in
your life with an ostomy or ibd it's going to
be hard but you have to give them space to accept
and to work through the condition because it
is something that is happening to them so you
have to give them grace with what they're going
through whether it's a new diagnosis or a new
ostomy it is such a big adjustment period that
I know a lot of people I even have a best friend
that's very like what do you need what you know
like what can I do and I'm like let me just sit
with this for a second uh I had a situation the
other day my bag leaked at my friend's house
right before we were going out and it has not
leaked in a very long time it's just like what
can I do do you need to change it like do you
have supplies blah blah and I was like let's
slow down here. Like, let me accept the fact
that my bag leaked after years. Like, I'm still
trying to grasp, like, how did it leak? Or sometimes
if my stomach hurts from my condition, sometimes
I'm like, why is it hurting? And someone's like,
well, what does it feel like? What are you doing?
Like, what did you eat? Blah, blah, blah. And
I'm like, give me some time. Give me some space
because it is so overwhelming when some people
try to overhelp that you just need some time.
My one piece of advice would be give people a
grace period and accept that there's some things
that they need to just do themselves to feel
physically and mentally okay. Yeah, that's right.
Give them some space. Give them some time. Maybe
feel free to educate yourself, but make sure
you use that. newfound knowledge carefully as
well, right? You don't want to crush somebody
with like facts and figures and yeah, so that's
very good. So we spoke about you speaking to
a lot of other people, but if you could go back
to the nine -year -old self, potentially even
on the day that you were diagnosed or, you know,
you received the news that there's something
fundamentally wrong, what would you tell yourself?
Hmm. I don't know if my nine year old self would
listen to me. It could be the 13 one year old,
you know? I think it would be nice if I sat with
myself in like a quiet place. And I think it's
hard to hear that everything will be okay. But
knowing that, I mean, because my future self
knows now that I'm okay. But understand that,
like, again, this is a lot that you're going
through. I know that you're in pain and I know
you're questioning, like, why is this happening
to you? And it's unfortunate that it did. But
I would tell her to be strong and to take it
with a grain of salt, to endure what I can and
make sure that I set limits with people who are
either trying to tell me things or trying to
make me do things. I have a choice when it comes
to. medications, procedures, stuff like that.
You don't have to tell people about your condition.
You don't have to feel like you have to be 100
% all the time. If you're not feeling well, communicate
at least that, that you're not feeling well.
It's just not a good day for you. And don't let
people push you. And don't let people tell you
what is and what isn't. You know your body. You
know yourself. It's you who have to live with
yourself at the end of the day. So accept what
you can. If you can't, just communicate that.
I would definitely tell her to communicate better
than how I was when I was younger. And just take
it day by day. Each day is going to be different.
But they're knowing now. I didn't know at the
time. There's a lot of other people going through
the same thing. So, you know, lean on your peers.
Lean on your family. And just take time for yourself
and just accept kind of what is and that maybe
things will look up someday. Sometimes the sort
of simple reassurance is all the reassurance
that humans need. So I think that's great. So
my final question for you is about the future.
And even though I always say this, it's very
difficult to answer. At least all we want to
have is hope, right? So do you believe that in
our lifetime we will find a cure for IBD? I think
there won't be a cure for one condition. I think
that it's going to take probably more than our
lifetime to figure out something for everyone's
condition. But I do think we are. making positive
strides, huge strides in the IBD world. I do
think that people who have the milder conditions
that are manageable, I think if we catch it early
on, I do think that people can, there will be
a cure for those people. I do think that IBD
is a spectrum, it ranges. So yes and no. I think
for some people, we definitely can have a cure
and mitigate their early stages. More complicated
situations, I think, will be a little more lifetime.
That's still enough hope for me. So I'll take
it, you know, and then we'll see how it goes.
And, you know, I agree with you. I think you're
absolutely right. And then, of course, you know,
on the other part, let's hope that science will
advance quickly enough to... to help the more
serious conditions as well. Well, Leah, thank
you so much. This was really great. I love the
fact that you're so open about it. I really enjoy
your story of going from a nine -year -old who's
basically being told that she has this certain
condition to somebody who actually works in that
same field later on. So that's really, really
inspiring. So keep doing that. Keep helping people
and keep on singing and dancing, even if it's
just in your room, you know. with yourself. I
think that is the right spirit to have when we're
faced with such adversity. So thank you so much
again for being on the show today. It was really
a pleasure to talk to you and I wish you nothing
but the best, you know, moving forward. Thank
you so much for having me. I've enjoyed this.
That's it for today's episode of Talking S***
presented by Colitis Unfiltered. I'm Frank Tabering
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