I was having a fever every day. I was throwing
up. I was going to the bathroom like constantly.
I could barely leave the house. So I landed in
the hospital again in October and this time it
was my mom. She was the one who first sat me
down and she was like, I know you might not want
to hear this but like have you considered that
maybe it's time to... have surgery. So, you know,
she kind of gave me her perspective on that.
And then we kind of came up with a list of pros
and cons for me personally to do it. And the
list of pros was much significantly longer than
the cons. This is Hannah, who got diagnosed with
ulcerative colitis at age 16 in Toronto, Canada.
Hannah is to be admired. She navigated years
of flares and failing treatments until she had
enough. She knew she couldn't reclaim her life
without giving up her colon. Today, she's telling
us all about her IBD journey. This is Talking
S***, presented by Colitis Unfiltered. My name
is Frank Tabering, and Hannah, welcome to the
show. Hi, thanks so much for having me. I'm excited
to chat. And it's a pleasure for me to have you
as well, because based on our conversation before,
you've had quite a journey. And this is something
that I would actually like to start us off with
to set the context as well. In, you know, a few
brief sentences, would you mind just sharing
with us a summary of your IBD journey, you know,
from diagnosis, but also to today and how you're
feeling today? Yeah, for sure. So like you said,
I was diagnosed at 16, almost 10 years ago now
for me. At the time, I wasn't having very many
symptoms. I just had some blood in my stool,
but my mom has colitis as well. So my doctor
wanted to get me an urgent referral. So I had
a colonoscopy and then after that was diagnosed,
started taking medication. I was in and out of
flares and remission for about four years. And
then in 2020, I had surgery to remove my colon
because of how it progressed. So that was about
five years ago now. And now I'm feeling pretty
good. I still have some flare -ups every now
and then. Right now I'm kind of in a mild flare
-up, but otherwise I'm doing pretty well. You
were at actual remission for quite some time,
and then the symptoms all of a sudden showed
back up? Or what happened really? that you went
from remission to a sudden sort of flare or setback?
It's kind of hard to say. It was like I would
try a medication and it would help for a few
months, maybe six months. I think the longest
remission I had was almost a year. And then it
was always kind of sudden. The medication would
just stop working for me and I would be in a
bad flare -up again and have to do a round of
prednisone and switch medications. That would
work for maybe a few months and then kind of
just repeating the cycle. And then the periods
of remission were getting shorter and shorter.
And eventually it wasn't even remission. It was
like I was still in a flare up, even after like
switching medication and having the prednisone
and stuff. So, yeah, it just got too severe that
nothing was really making any difference. So
yeah, I think that really sets the context of
what we're going to talk about today in a little
bit more detail. And I kind of always like to
start with taking a trip back to the past, you
know, and then talk a little bit about the present
before we take a look at the future. So if we
go back to you at age 16, how did the doctor
break the news to you? And also when you heard
that you had ulcerative colitis, what went through
your head at that moment? don't have an immediate
family member it was less of a shock because
I knew that that symptom that I was having like
the blood in my stool I knew that that was a
pretty big indicator and like most likely was
headed in that direction so mentally I was like
still a little bit prepared going into the colonoscopy
I remember like they put me under for it because
I was young so I don't remember much but I remember
like I was still kind of out of it but my parents
were there and they were showing the pictures
from the scope and kind of just explaining everything
and just wanted to start me on medication right
away and I don't think I really said much of
anything and then when we left I just remember
like on the way home I was just like crying to
my parents because I was so scared that I would
end up needing to have surgery like it was my
worst fear I was terrified of like it progressing
and getting worse so yeah I was just like I was
I was prepared but at the same time like just
hearing it like officially it still like was
a lot to process I guess Yeah. And I think what's
maybe a little bit particular about your situation,
you told me that your mom has ulcerative colitis
as well, right? Was she diagnosed sort of before
your birth or later? She was actually diagnosed
when she was 15. So very similar in the timeline.
And her disease progressed really quickly. She
had to have emergency surgery when she was 17.
So I've kind of like grown up. Just knowing kind
of things that she's been through and like her
current struggles. She has a J pouch now. So
just, you know, growing up, seeing her every
now and then have like a bowel obstruction or
not being able to eat certain foods, stuff like
that. So I've always kind of been aware and kind
of just knew that that might happen to me too.
So basically when you were diagnosed, like you
mentioned, it's not like you didn't know what
ulcerative colitis was. I think you've had that
sort of. Right. And did that sort of make you
feel maybe more at ease or because, you know,
a lot of patients that get diagnosed, they might
never have heard of it. And there's this sudden
panic, right, that erupts. Did you have that
same moment or were you just more on the, for
lack of a better word, calmer side when you got
your diagnosis because of your experience that
you went through with your with your mom and
her colitis? Yeah, I think it definitely makes
a huge difference. Like a lot of people I talked
to who were diagnosed didn't know anybody in
their family, didn't even know what the disease
was, or maybe they've kind of heard of it, but
they just think like, oh, it's just a stomach
ache or like, oh, you know, it's similar to IBS,
like it's no big deal. But knowing, yeah, like
my mom having it and I knew what it was, I kind
of like had somewhat of an idea. I think that
definitely helped. And also just knowing that
she would. know a lot about it and like know
more about the symptoms and possible like treatment
side effects kind of all that and having her
by my side I definitely felt more calm like my
worries with it were more so about progression
and like it getting worse rather than just like
the diagnosis itself because like we said it
it wasn't super random it didn't kind of come
out of nowhere so that's interesting so Because
a lot of people who are diagnosed, they sort
of have this unknown that they carry with them.
At the same time, they're scared and they feel
really alone with this disease as well. So I
guess for you, if we can say the blessing and
the curse maybe was that you had somebody on
your side to sort of be there with you, right?
Through your flares and to your treatments. Yeah,
that's great. So speaking of treatments. Can
you take us a little bit through what kind of
medications you were on? And I would also like
to know if the doctors sort of started you on
a traditionally sort of lower medication tier,
you know, with like five ASAs and then progressed
to biologics. What kind of medications were you
on and how quickly did you sort of climb the
tier into the biologic category? Yeah. So, yeah,
I've gone through so many treatments. Honestly,
like I'll go through them, but I might forget
some because. I've probably lost count somewhere
along the way. But yeah, so the way that the
insurance here works, like everything's covered,
but you have to start on tier one, like the lowest
medications. And those have to not work to be
able to kind of progress to the next category.
And then again, same thing to progress to the
biologics. And when I was first diagnosed, I
was considered like mild to moderate. It wasn't
yet. like the moderate to severe. So they did
start me on Mezavant and the 5 -ASA, like the
enemas and cordament, which is like the lower
kind of steroid than prednisone. Those were really
awful. Honestly, I got a lot of side effects
from them. The end was obviously like so painful,
so awkward to do. They didn't end up really working.
So luckily I only had to do those for about two
months. But I think it was like three or four
months that I got switched to Imuran, I think.
So another just immunosuppressant. And I was
taking that with the coordinate for a while.
I think that one was about. a year that it was
working and then my GI was not too satisfied
because my inflammatory markers were still like
way too high so they wanted to switch me to biologics
but I was a little bit hesitant on like the self
-injection options and all that and at this point
I was about to go to university and some of the
biologics only worked for like two months one
of them didn't work at all I got I think eight
weeks course of treatment and nothing was happening
at all, even with being on the prednisone. So
we just switched that one as well, but. You mentioned
enemas and I had to sort of smile a little bit
because that was torture for me as well, to the
point that I think after trying it for once or
twice, I just refused to take them. Luckily for
me, they actually, it's bittersweet, but they
also didn't work. So I had an excuse to just
drop them, but I mean. I'm still having these
moments in my head that now I can laugh about
of me just on the floor, you know, with one leg
sort of tilted up to my chest, just trying to
get this thing in and it just would not want
to. Yeah, that part's painful. And then when
you finally get the medication in, that's also
painful. And it's like, oh, it's a whole thing.
Yeah, yeah, yeah, absolutely. Now, you said that
you moved to university. That meant that you've
changed GI as well. Did you... have trust in
this person and that doctor sort of from the
get -go? Was this somebody who was proactive,
well -versed in IBD? And how comfortable did
you feel with that doctor, you know, and also
going through all these treatments? Was it just
sort of like, you know, you'll blindly follow
him or her, you take all the advice, you just
say, okay, new treatment, let's go? Or how was
that relationship with your GI back then? And
maybe how's your relationship with your current
GI as well? My GI that I had that initially diagnosed
me, she actually knew the GI that she was referring
me to. I think maybe either through school or
like residency or something like she knew of
him. And then at my first appointment, yeah,
he's just really good and like listening to me.
practice also had all the GIs paired with a nurse
practitioner. So I would be able to email her
any questions really quickly without having to
call or, you know, get a call back or book an
appointment. So that was really helpful. And
I think that made me feel secure in that, like
somebody would be there to kind of help me. So
yeah, I think that was good. We had a good relationship.
I think the only problem was I was still really
hesitant with the self -injectable. biologics
and I was young you know I was 18 I was in a
little bit of a flare -up it wasn't too bad but
I acted like I wasn't in a flare -up I was telling
him my symptoms were all good because I wanted
to keep with the medication instead of switch
to biologics and that was really stupid of me
because a few months later I ended up in the
hospital and had to switch anyways so you know
I should have been more honest but it it is hard
I think especially when you're young and for
anybody, like it's such intimate symptoms to
be kind of like talking about, especially if
there is any hesitancy or fear. So I think like
making sure you really do have that relationship
that you're okay to bring it up. But also if
you are feeling like that, it's maybe good to
bring someone to your appointment with you that
can kind of like remind you, like keep on track,
be honest, you know, like really just say your
fears and stuff like they are there to help you.
Of course, they want what's best for you, but
you might not want that option. So I think it's
important to just kind of talk through everything.
I think what you mentioned, that's actually a
really great tip about sort of having somebody
on your side. that can hold you accountable.
I'm pretty active in the Reddit community as
well. And one thing that I really see people
struggle is with their doctors, you know, even
with GIs that potentially are not super well
versed in IBD. And, you know, a lot of people
sort of, they don't have the trust in their doctor.
And then a lot of the specialists, they really
don't seem to be very proactive. And this is
why I asked you this question, because I want
people to hear that. First of all, there are
really good IBD specialists and medical teams
out there. And second, it's very important, I
think, to also raise your voice and stand your
ground and fight for your symptoms. And so it's
very interesting that you mentioned that you
actually hid some details about your symptoms
from your doctor, but you yourself said you were
young. So maybe to make the transition there
as a 16 -year -old, as an 18 -year -old, what
was it like to live with this disease? Because,
I mean, I was diagnosed at 29. So for me, I really
was never embarrassed to talk about it because
it just tore my life apart, essentially, physically
and mentally. But I'm assuming that 16, 18, you
know, that young age, it's completely different.
So how did you navigate a disease, you know,
when you look back as a young adult? yeah so
I mean obviously like I had my mom and her support
and her understanding which is great but I didn't
know anyone around my age who had IBD or had
any health concern at all like in my friend group
and even at my school like there was not really
anybody who would talk about like oh they have
diabetes or celiac disease or like really anything
so that felt really isolating and then even when
I would have to miss school or, you know, I was
doing sports. So sometimes I would have to miss
practices and stuff like that. I would tell my
diagnosis, but that was usually like the extent
of it and not diving into the symptoms because
it just felt like, yeah, embarrassing or something
that like nobody else talks about or nobody else
is going through to understand either. So I definitely
feel like it was isolating. to be worried and
like have that fear of kind of judgment or like
oh I'm the only one going through this so everyone's
going to be like oh what is she talking about
you know just creating distance from like friend
groups because I was the only one kind of going
through it and I felt that in university too
a little bit at the start but then I started
sharing a little bit more here and there and
what made me kind of end up leaning more on people
and that kind of support was just getting back
feedback that like it's okay or people would
listen with no judgment and empathy and then
i was like okay maybe it is okay to kind of talk
about it more like explain more so so what you're
saying is and please correct me if i'm wrong
is that you found your courage to talk about
colitis or you found your voice by seeing people
react to you more openly or what else did you
do to sort of, you know, come up to the point
where today and you're basically advocating,
right? Or you're raising awareness. Was that
maybe, was it the surgery or was there something
else sort of that flipped that switch and that
made you sort of really comfortable to go out
and, you know? fight and shout as as an IBD warrior
you know as we call ourselves yeah um I think
a couple things like one just growing up and
getting a little bit older and kind of realizing
that not everything really matters and also if
somebody does want to judge who I am as a person
from a diagnosis I probably don't really want
them to be in my life in the first place um so
that was kind of like a mental switch and yeah
just having people reacting well because in my
mind I wasn't expecting that accepting reaction
so it prevented me from you know being honest
and then when I did kind of start open that door
and kind of start letting some stuff out and
they were just really accepting and understanding
it kind of made me realize that okay probably
a lot of people will take it in a good way and
again if they don't that's kind of their problem
not my problem So that was a big mental shift.
And then also I think the biggest one was the
surgery because some of the staff was kind of
like very pushy on don't do surgery, keep trying
this medication, you're so young, blah, blah,
blah. So that was kind of like, yeah, I'm so
young, you know, but I'm just struggling to survive.
So it was just a kind of a weird narrative. So
I was like, other people are so young also going
through this. They probably feel the same. I
didn't have anyone that I knew around my age
when I was in high school. Even joining some
like support group things that they have, like
Crohn's and Colitis Canada, the age group was
mostly older. So again, that was kind of the
drive to be like, maybe I should just speak up
and share and kind of be the person who I needed
to see when I was younger. just, you know, help
other people feel less alone because it is so
isolating at a young age. So I think the combination,
but definitely surgery, it pushed me to get more
actively involved. Like I started volunteering
and started advocating and like doing more things
because I felt like it almost gave me a purpose.
two keywords you mentioned, you know, getting
older and surgery. And then another thing that
I found sort of really surprising is that you
were at the hospital and I'm sure you were advised
or it was recommended to you to have the surgery.
And you said some staff members advise against
surgery. So what was it that made you go ahead
with it? Was it really your GI? Was it maybe
your mom? Was it just that, you know, you couldn't
take the symptoms anymore? Eventually, What led
you to make that decision to have the surgery?
So I'm kind of giggling here because nobody actually
advised me to have the surgery. Basically, I
was in the hospital for a week in March with
a flare -up, switched medications, was doing
great for two months, then was in a really bad
flare -up in the hospital for another week in
July. And I was just in a flare -up for months
and months and months. I was on really high dose
prednisone. It wasn't doing anything. I was just
getting so sick. You know, my symptoms were so
bad. I was having a fever every day. I was throwing
up. I was going to the bathroom like literally
constantly. I could barely leave the house and
I was so weak and all that stuff, right? So I
landed in the hospital again in October. And
this time, like I was still, I was just getting
so much worse. They had me on all these different
medications, had to be on TPN because I wasn't
absorbing anything. I could barely eat. And it
was actually, it was my mom. She was the one
who first sat me down and she was like, I know
you might not want to hear this, but like, have
you considered that maybe it's time to have surgery?
And I was like, I don't know. Like, I'm scared.
I don't know how life's going to be, whatever,
whatever. So she obviously had had the surgery.
So, you know, she kind of gave me her perspective
on that. And then we kind of came up with a list
of pros and cons for me personally to do it.
And the list of pros was much significantly longer
than the cons. So basically, my mom and I are
the one who brought that up to my GI doctor.
He like came in to do rounds or whatever. I was
like you know I think I want to get surgery and
he was the first person who said to me uh are
you sure like you're pretty young I don't want
to have to give you a stoma you should be out
enjoying your life not worrying about surgery
and then I was like You're very right. I should
be out enjoying my life, but I've literally lost
this entire year to colitis. Like I've been in
and out of the hospital. I've been so sick. Haven't
been able to do anything with friends or family.
Like I'm so done. I can't keep doing this. And
his potential solution was to try another medication
that might work in three to four months. And
I really, truly did not think I had three to
four months. I was rapidly losing weight. Like
I was just skin and bones. I could barely have
the strength to like stand up and walk around.
And it was just really bad. And I wanted to get
out of the hospital. I was already there for
a week and a bit and just torturous in the hospital,
as I'm sure you know. So I really wanted to get
out of the hospital. And I didn't think that
that would be possible without surgery. so basically
he had a stoma nurse come talk to me and like
you know do an assessment kind of explain things
make sure that I was like mentally knew what
I was getting into I guess and then he came back
and I was like yeah I really still don't want
my intestine like please take it out I actually
like I need you to take it out I was basically
begging at this point which very interesting
because that was always my worst fear when I
was first diagnosed. And now I was at the point
where I just like, I could not take it anymore.
I'd already been through so, so, so many medications.
And it was like, even if this does work for a
bit, it probably won't work forever. I just had
that perspective because everything else had
failed. Was it just one surgery? Take us through
a little bit of the time of how that happened.
So when I first, you know, told the surgeon like
I need you to do this and he finally agreed he
was talking through everything with me and he's
like okay perfect so like in three months you
can come back and we can create the internal
pouch and then three months after that you can
have it reconnected and you'll have a jay pouch
and whatever and at the time I was in my third
year of university and luckily like it was all
online school at this point because of COVID
so I was still doing school in the hospital so
I was like so determined I was like I do not
want to be a year behind like I still want to
graduate with my friends I was so determined
but I was only able to do that because everything
was online but anyways so I told him like you
know I at least want to finish my third year
before getting like two more surgeries so I'm
definitely not doing that in the next year and
he was like okay no worries we can do a follow
-up in the summer like when you're on your summer
break and talk more about those other two surgeries
So that summer came and went. I got a research
job at my university, so I never went home that
summer. So I never had that second talk. But
as time went on, I kept thinking about, do I
do the surgery? Do I not do the surgery? And
like I said, seeing my mom growing up with her
J pouch, like certain struggles of still needing
to be near a bathroom for. you know like you
can go on some trips and stuff but still kind
of there there's still some level of urgency
because it's not like you have perfect function
and just the risk of like the blockages and the
scar tissue and somewhat of a decreased diet
and stuff like that and then I looked at myself
and I really didn't have any of those issues
I could eat I still do eat essentially everything.
I don't always need to worry about being near
a bathroom at all times. So I started thinking
more and more about maybe just never doing the
surgery. And for me, the urgency piece was one
of the worst. symptoms especially like mentally
because I would always have to be thinking about
it always worried like can I go do this activity
will there be a bathroom there you know all that
stuff then I just was like maybe I just will
never do it but we'll see because my surgeon
had told me even if I want I could do it like
five ten years from the surgery so then more
recently I had a scope of like the rectal stump
that is still there holding the spot for the
pouch and it is covered in scar tissue really
inflamed apparently actually a scope three years
ago I was diagnosed with divergent proctitis
but they never told me they told me it was slightly
inflamed but still normal and they never gave
me any medication or any follow -up So then earlier
this year when they were like, oh yeah, like
how have you been treating your divergent proctitis?
I was like, my what? Like I had no idea. But
anyways, long story short, they don't think a
J pouch would even be successful anymore because
of everything going on down there. But thank
God I already came to that conclusion myself
because imagine this whole time I was like, oh,
it's fine. I'll have the J pouch surgery soon,
like whatever. And then I wasn't able to. At
least that is the only good side of them not
telling me. But yeah, so I only had the one surgery.
I'm not going to have the J pouch. I might have
to have the like rectum taken out and sewn up
like the Barbie surgery or whatever. But it's
not really like urgent or something that is planned
in the near future. Some people, they think that,
hey, I have my colon taken out. My colitis is
cured. You know, I will never feel anything again.
But that's not always the case. So can you just
take us through your life right now and also
how it is going symptom -wise? And if so, how
are you navigating that? For sure, yeah. That's
honestly a misconception that I myself had at
the start, especially because after the surgery,
I felt like a million times healthier. You know,
like all those other symptoms, like the pain
and the not being able to eat and the weight
loss. I could eat again I was gaining weight
back physically I was feeling better and I wasn't
having any symptoms at all for quite some time
like two maybe even three years and then recently
some of those kind of like extra intestinal manifestations
of the IBD have showed up a lot more and yeah
when my doctor was like oh it might be your IBD
I was like but I don't have my colon she's like
yeah you still have IBD and I was like why did
nobody tell me this yeah so This year has been
kind of a lot of up and down with the symptoms,
mostly like joint pain is kind of become the
most significant one. And it really sucks because
sometimes I feel like I'm 80 years old and I'm
like, I'm so young to be having like all these
different joint pain problems. But again, it
goes back to the whole thing. Like a lot of people
just think, oh, it's a stomach ache. Like, you
know, you just. you have some digestion problems
and that's it but it's truly like so much more
than that I think joint pain is really like the
main one but like I haven't had any problems
with like my skin or eyes or kidneys but like
that's another route that people can have some
like issues with so yeah so a journey that is
not approaching the end quite quite yet, right?
So yeah, I see. Now reflecting back on the time
that you were diagnosed, all the flaring, even
the surgery, how has this disease changed you
as a person? Yeah, that's a really good question.
I mean... I think personally, I was always like
really on the empathetic side, even as a kid,
like I would see somebody going through something
or even just looking a little bit sad and I would
always kind of like feel that myself for them.
But I think definitely has just really changed
my perspective and made me even more like empathetic
or understanding, I guess, especially because
with things like colitis and other autoimmune
kind of things. the majority of it is very much
invisible and so from the outside you can't really
ever see what's going on and the amount of times
I've had people say like oh but you don't look
sick or you look fine or even like saying that
they wish that they couldn't gain weight or that
they would lose weight like how I was even though
like that was not my goal you know I was super
unhealthy but from the outside they're just like
assuming something that isn't true so I think
that has really changed like I've never give
someone a story until I hear their story I never
try to assume because you really never know what's
going on behind the scenes for anybody even like
if someone's having a really bad day or someone's
just like so rude to me I always try and still
pause and be like okay it's probably nothing
to do with me they're probably going through
something on their own like everybody has their
thing so I think patience and understanding is
probably like the biggest one You earlier talked
about a misconception in regards to IBD. So in
your mind, what are some other misconceptions
about colitis or IBD that are common? Yeah. So
I know I touched on this one already, but just
the idea that it's kind of only the stomach or
like, oh, it's the same as IBS. You're only like...
poor digestion or stomach aches kind of thing
but it's really again whole body can affect everything
every aspect that's a big one and then I think
one that I keep seeing more frequently now that
like social media is such a big thing is a lot
of people kind of assuming or sharing that you
can just cure your colitis if you just change
your diet or if you just do this one quick fix
or you just exercise more or you know all these
things and that's not to say diet lifestyle stress
all those things are very important they can
help you stay in remission or opposite if it's
bad they can make a flare come but the thing
with colitis is it is chronic like even me I
don't have my colon I still technically I still
have colitis so it kind of it's one of those
things where it's like People maybe are assuming
that it's more in their control than it actually
is. All those things can help and make a difference.
But even if you're in remission for years and
years and you're doing everything absolutely
perfectly right, all your diet, all your exercise,
you could end up in a flare -up randomly at any
point. And I think that's part of the missing
piece when people talk about it. They're like,
oh, I healed my symptoms because I changed my
diet and that's great. But you can still have
a flare -up. any time, any point. So that's a
big one. Like it is, it is for life, you know?
And also I've seen this kind of discourse that
colitis is less severe than Crohn's and you know,
Crohn's is everywhere, like throat, stomach,
small intestine, large intestine, mouth. So you
can have a lot of problems with that, but to
say that it's necessarily worse is not. always
true because you can have mild Crohn's, but you
could have severe colitis and you could be way
more sick with severe colitis. Right. So it just
really depends. Like every, everyone's different.
Yeah. Yeah. So we agree then that, you know,
switching to a kale smoothie diet is definitely
not going to cure your colitis. Oh, I agree with
you on that one. Yeah. Okay, great. So you've
had great support, you know, from your mom and
I'm assuming she was probably the central support
person that you could rely on during your journey
with IBD. But as you also kind of mentioned,
a lot of people don't really know what this disease
is, what this disease does. And so it can be
very difficult for people that are not going
through the same things that we're going through
to talk about it, but also... to react appropriately
in regards to us, right? Their loved ones, their
friends. So what words of advice do you have
for friends and family of someone with IBD? I
think a really big one is to do research on your
own because it can become very exhausting to
continuously have to explain and re -explain.
what diagnosis you have, what it is, what it
means, what treatment they can do for it, what
the symptoms are, all those things, right? And
of course, it's okay to ask questions to your
friend or family who has it to kind of gain a
better understanding, but it's really nice when
people kind of do a little bit of their own.
research to kind of just gain a better understanding
in general especially with some of those symptoms
that maybe people won't be so forthcoming with
then you can kind of better understand and just
really like listening without judgment and being
able to be okay and like be adaptable with change
of plans or you know canceling plans things like
that because It can seem like when you're going
through a flare, like, oh, I'm the problem. Like,
I'm always sick. I can't do all these things.
But really, it's not like you asked to be in
a flare. So if your friends and family can be
like validating and supporting, like, it's totally
OK. It's not your fault. Like, we can do something
else or we can do it like next time. That is
very helpful because when you're sick, sometimes
you really don't know what you need or what you
want. But just like understanding and. compassion
go a really long way. It's very interesting that
you mentioned doing research on your own, especially
if you're someone who doesn't have the disease,
but you either live with someone or you care
for someone who has the disease. And if I may
build on that, I think you're absolutely right.
do research, but be careful to not take that
research and then potentially sort of bombard
the person, you know, with IBD, with what you've
learned. I think it's more about do the research,
but for yourself, right? So that you can somehow
relate to it, you know, even though you'll never
be able to sort of feel the same things that
we feel, because I think there's a danger, of
course, that then, you know, it can come patronizing
very quickly. But I totally agree with your point
that I think that's a great way to get an onboarding,
you know, onto IBD and then be able to at least
to some extent understand what the person that
you're caring for is actually going through.
Yeah, for sure. Yeah, definitely a good point.
Like more research just to understand on your
own, especially if they're not sharing like every
single symptom they go through or all the things
like that or even just. medication side effects
like just so you can kind of gain a little bit
of perspective but yeah not like oh my god i
learned this what about this are you okay with
this so you know yeah that's a good point if
you could speak to yourself at age 16 on the
day of your diagnosis or shortly after the diagnosis
what would you tell yourself that is a you know
that's a good question because there's so many
things you could say I think the main thing I
would say is like you're gonna get through it
like you'll be okay it might seem like you're
not gonna be okay especially at certain times
when you're sick and you're missing out on everything
and you don't feel like you're living you're
just surviving but like you're gonna get through
it you'll be okay you just have to keep going
even if it feels like you're going nowhere just
keep going and then to kind of go back to the
whole relationship with your gi um just being
more comfortable with being open and honest like
i think that has such an emotional and mental
health aspect that i could have really used when
i was younger so i think that would be something
that i would kind of bring up to younger me So
my last question then is looking into the future.
And even though I know it's a very hard one to
answer, I do believe that everybody has at least
some sort of hope or feeling about this. Do you
think we'll see a cure for IBD during our lifetime?
You know, like you said, it is hard to answer,
but I really do feel hopeful that we will. There's
been quite a few recent kind of discoveries about
IBD. in the news and in the research world. And
even now, like you'll see a new medication kind
of come forward to the market. So I think the
possibility is really high and it's getting higher
and higher. Crohn's and colitis is really increasing
in the modern world in our day and age. So I
really do feel hopeful. I would honestly be more
surprised if there wasn't at some point. I'm
completely with you. I'm not really sure this
might happen for the next, you know, five to
10 years, but I do believe that, you know, we
are getting closer to finding a more permanent
relief for people that don't necessarily involve,
you know, biologics or continuous. periods of
remission and flaring and going back and forth.
So I'm hopeful as well. And this is exactly how
we want to end with hope and sort of a positive
outlook for the future, not just for us, but
also everybody else who is facing IBD. So Hannah,
this was an absolutely fascinating conversation.
And I want to thank you very, very much for being
here today and talking to me. I think the world
needs... more IBD warriors like you. And I'm
very happy that you're so outspoken about it.
I encourage you to continue doing that because
I do believe that we are helping other people
who have been recently diagnosed or who are living
with this disease for a long time to get through
tougher times or periods where they feel isolated
or embarrassed. So I think what we're doing is
very, very important and we need to keep doing
this. So thank you so much for what you do. Yeah,
thank you so much. And I really appreciate you
being here. And I'm going to sign off then with
saying I wish you the best of luck. And I hope
that you are able to find a way or remedies for
your current symptoms. And other than that, you
know, keep enjoying that life with IBD and all
the best. Thank you so much. Thanks for having
me. It was great. Thank you as well. That's it
for today's episode of Talking Sh**, presented
by Colitis Unfiltered. I'm Frank Klebring. And
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