Latest / Crohn's & Colitis Unfiltered / Growing up with colitis: Hannah's fight for survival at 16

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Growing up with colitis: Hannah's fight for survival at 16 · Crohn's & Colitis Unfiltered

0:03
I was having a fever every day. I was throwing
0:06
up. I was going to the bathroom like constantly.
0:09
I could barely leave the house. So I landed in
0:12
the hospital again in October and this time it
0:16
was my mom. She was the one who first sat me
0:19
down and she was like, I know you might not want
0:23
to hear this but like have you considered that
0:25
maybe it's time to... have surgery. So, you know,
0:29
she kind of gave me her perspective on that.
0:31
And then we kind of came up with a list of pros
0:33
and cons for me personally to do it. And the
0:37
list of pros was much significantly longer than
0:40
the cons. This is Hannah, who got diagnosed with
0:44
ulcerative colitis at age 16 in Toronto, Canada.
0:49
Hannah is to be admired. She navigated years
0:52
of flares and failing treatments until she had
0:55
enough. She knew she couldn't reclaim her life
0:58
without giving up her colon. Today, she's telling
1:02
us all about her IBD journey. This is Talking
1:06
S***, presented by Colitis Unfiltered. My name
1:09
is Frank Tabering, and Hannah, welcome to the
1:12
show. Hi, thanks so much for having me. I'm excited
1:15
to chat. And it's a pleasure for me to have you
1:19
as well, because based on our conversation before,
1:23
you've had quite a journey. And this is something
1:25
that I would actually like to start us off with
1:27
to set the context as well. In, you know, a few
1:31
brief sentences, would you mind just sharing
1:35
with us a summary of your IBD journey, you know,
1:38
from diagnosis, but also to today and how you're
1:41
feeling today? Yeah, for sure. So like you said,
1:45
I was diagnosed at 16, almost 10 years ago now
1:48
for me. At the time, I wasn't having very many
1:53
symptoms. I just had some blood in my stool,
1:56
but my mom has colitis as well. So my doctor
1:59
wanted to get me an urgent referral. So I had
2:03
a colonoscopy and then after that was diagnosed,
2:05
started taking medication. I was in and out of
2:10
flares and remission for about four years. And
2:13
then in 2020, I had surgery to remove my colon
2:18
because of how it progressed. So that was about
2:21
five years ago now. And now I'm feeling pretty
2:25
good. I still have some flare -ups every now
2:28
and then. Right now I'm kind of in a mild flare
2:31
-up, but otherwise I'm doing pretty well. You
2:35
were at actual remission for quite some time,
2:38
and then the symptoms all of a sudden showed
2:42
back up? Or what happened really? that you went
2:47
from remission to a sudden sort of flare or setback?
2:51
It's kind of hard to say. It was like I would
2:53
try a medication and it would help for a few
2:56
months, maybe six months. I think the longest
2:59
remission I had was almost a year. And then it
3:02
was always kind of sudden. The medication would
3:05
just stop working for me and I would be in a
3:08
bad flare -up again and have to do a round of
3:10
prednisone and switch medications. That would
3:14
work for maybe a few months and then kind of
3:18
just repeating the cycle. And then the periods
3:20
of remission were getting shorter and shorter.
3:23
And eventually it wasn't even remission. It was
3:26
like I was still in a flare up, even after like
3:29
switching medication and having the prednisone
3:32
and stuff. So, yeah, it just got too severe that
3:35
nothing was really making any difference. So
3:38
yeah, I think that really sets the context of
3:40
what we're going to talk about today in a little
3:42
bit more detail. And I kind of always like to
3:44
start with taking a trip back to the past, you
3:46
know, and then talk a little bit about the present
3:48
before we take a look at the future. So if we
3:51
go back to you at age 16, how did the doctor
3:56
break the news to you? And also when you heard
3:59
that you had ulcerative colitis, what went through
4:01
your head at that moment? don't have an immediate
4:08
family member it was less of a shock because
4:11
I knew that that symptom that I was having like
4:15
the blood in my stool I knew that that was a
4:18
pretty big indicator and like most likely was
4:22
headed in that direction so mentally I was like
4:24
still a little bit prepared going into the colonoscopy
4:28
I remember like they put me under for it because
4:31
I was young so I don't remember much but I remember
4:35
like I was still kind of out of it but my parents
4:37
were there and they were showing the pictures
4:40
from the scope and kind of just explaining everything
4:43
and just wanted to start me on medication right
4:45
away and I don't think I really said much of
4:47
anything and then when we left I just remember
4:50
like on the way home I was just like crying to
4:51
my parents because I was so scared that I would
4:55
end up needing to have surgery like it was my
4:58
worst fear I was terrified of like it progressing
5:00
and getting worse so yeah I was just like I was
5:05
I was prepared but at the same time like just
5:07
hearing it like officially it still like was
5:10
a lot to process I guess Yeah. And I think what's
5:15
maybe a little bit particular about your situation,
5:16
you told me that your mom has ulcerative colitis
5:19
as well, right? Was she diagnosed sort of before
5:23
your birth or later? She was actually diagnosed
5:27
when she was 15. So very similar in the timeline.
5:30
And her disease progressed really quickly. She
5:34
had to have emergency surgery when she was 17.
5:38
So I've kind of like grown up. Just knowing kind
5:43
of things that she's been through and like her
5:45
current struggles. She has a J pouch now. So
5:48
just, you know, growing up, seeing her every
5:51
now and then have like a bowel obstruction or
5:53
not being able to eat certain foods, stuff like
5:55
that. So I've always kind of been aware and kind
5:58
of just knew that that might happen to me too.
6:02
So basically when you were diagnosed, like you
6:04
mentioned, it's not like you didn't know what
6:07
ulcerative colitis was. I think you've had that
6:10
sort of. Right. And did that sort of make you
6:14
feel maybe more at ease or because, you know,
6:17
a lot of patients that get diagnosed, they might
6:20
never have heard of it. And there's this sudden
6:22
panic, right, that erupts. Did you have that
6:25
same moment or were you just more on the, for
6:28
lack of a better word, calmer side when you got
6:30
your diagnosis because of your experience that
6:32
you went through with your with your mom and
6:34
her colitis? Yeah, I think it definitely makes
6:36
a huge difference. Like a lot of people I talked
6:38
to who were diagnosed didn't know anybody in
6:41
their family, didn't even know what the disease
6:43
was, or maybe they've kind of heard of it, but
6:46
they just think like, oh, it's just a stomach
6:48
ache or like, oh, you know, it's similar to IBS,
6:51
like it's no big deal. But knowing, yeah, like
6:55
my mom having it and I knew what it was, I kind
6:58
of like had somewhat of an idea. I think that
7:00
definitely helped. And also just knowing that
7:03
she would. know a lot about it and like know
7:07
more about the symptoms and possible like treatment
7:09
side effects kind of all that and having her
7:12
by my side I definitely felt more calm like my
7:15
worries with it were more so about progression
7:18
and like it getting worse rather than just like
7:20
the diagnosis itself because like we said it
7:24
it wasn't super random it didn't kind of come
7:26
out of nowhere so that's interesting so Because
7:30
a lot of people who are diagnosed, they sort
7:33
of have this unknown that they carry with them.
7:36
At the same time, they're scared and they feel
7:39
really alone with this disease as well. So I
7:41
guess for you, if we can say the blessing and
7:45
the curse maybe was that you had somebody on
7:47
your side to sort of be there with you, right?
7:49
Through your flares and to your treatments. Yeah,
7:52
that's great. So speaking of treatments. Can
7:54
you take us a little bit through what kind of
7:57
medications you were on? And I would also like
7:59
to know if the doctors sort of started you on
8:02
a traditionally sort of lower medication tier,
8:04
you know, with like five ASAs and then progressed
8:06
to biologics. What kind of medications were you
8:09
on and how quickly did you sort of climb the
8:13
tier into the biologic category? Yeah. So, yeah,
8:17
I've gone through so many treatments. Honestly,
8:19
like I'll go through them, but I might forget
8:21
some because. I've probably lost count somewhere
8:24
along the way. But yeah, so the way that the
8:26
insurance here works, like everything's covered,
8:29
but you have to start on tier one, like the lowest
8:32
medications. And those have to not work to be
8:36
able to kind of progress to the next category.
8:38
And then again, same thing to progress to the
8:40
biologics. And when I was first diagnosed, I
8:44
was considered like mild to moderate. It wasn't
8:48
yet. like the moderate to severe. So they did
8:51
start me on Mezavant and the 5 -ASA, like the
8:55
enemas and cordament, which is like the lower
8:59
kind of steroid than prednisone. Those were really
9:03
awful. Honestly, I got a lot of side effects
9:06
from them. The end was obviously like so painful,
9:09
so awkward to do. They didn't end up really working.
9:13
So luckily I only had to do those for about two
9:15
months. But I think it was like three or four
9:18
months that I got switched to Imuran, I think.
9:23
So another just immunosuppressant. And I was
9:26
taking that with the coordinate for a while.
9:28
I think that one was about. a year that it was
9:31
working and then my GI was not too satisfied
9:35
because my inflammatory markers were still like
9:37
way too high so they wanted to switch me to biologics
9:42
but I was a little bit hesitant on like the self
9:44
-injection options and all that and at this point
9:48
I was about to go to university and some of the
9:51
biologics only worked for like two months one
9:53
of them didn't work at all I got I think eight
9:57
weeks course of treatment and nothing was happening
10:01
at all, even with being on the prednisone. So
10:04
we just switched that one as well, but. You mentioned
10:08
enemas and I had to sort of smile a little bit
10:10
because that was torture for me as well, to the
10:14
point that I think after trying it for once or
10:17
twice, I just refused to take them. Luckily for
10:20
me, they actually, it's bittersweet, but they
10:22
also didn't work. So I had an excuse to just
10:25
drop them, but I mean. I'm still having these
10:29
moments in my head that now I can laugh about
10:31
of me just on the floor, you know, with one leg
10:33
sort of tilted up to my chest, just trying to
10:35
get this thing in and it just would not want
10:37
to. Yeah, that part's painful. And then when
10:40
you finally get the medication in, that's also
10:42
painful. And it's like, oh, it's a whole thing.
10:45
Yeah, yeah, yeah, absolutely. Now, you said that
10:49
you moved to university. That meant that you've
10:52
changed GI as well. Did you... have trust in
10:57
this person and that doctor sort of from the
10:59
get -go? Was this somebody who was proactive,
11:02
well -versed in IBD? And how comfortable did
11:04
you feel with that doctor, you know, and also
11:06
going through all these treatments? Was it just
11:09
sort of like, you know, you'll blindly follow
11:10
him or her, you take all the advice, you just
11:13
say, okay, new treatment, let's go? Or how was
11:16
that relationship with your GI back then? And
11:19
maybe how's your relationship with your current
11:21
GI as well? My GI that I had that initially diagnosed
11:27
me, she actually knew the GI that she was referring
11:31
me to. I think maybe either through school or
11:35
like residency or something like she knew of
11:38
him. And then at my first appointment, yeah,
11:41
he's just really good and like listening to me.
11:44
practice also had all the GIs paired with a nurse
11:48
practitioner. So I would be able to email her
11:51
any questions really quickly without having to
11:53
call or, you know, get a call back or book an
11:56
appointment. So that was really helpful. And
11:57
I think that made me feel secure in that, like
12:01
somebody would be there to kind of help me. So
12:03
yeah, I think that was good. We had a good relationship.
12:07
I think the only problem was I was still really
12:10
hesitant with the self -injectable. biologics
12:14
and I was young you know I was 18 I was in a
12:18
little bit of a flare -up it wasn't too bad but
12:20
I acted like I wasn't in a flare -up I was telling
12:23
him my symptoms were all good because I wanted
12:26
to keep with the medication instead of switch
12:28
to biologics and that was really stupid of me
12:31
because a few months later I ended up in the
12:34
hospital and had to switch anyways so you know
12:38
I should have been more honest but it it is hard
12:42
I think especially when you're young and for
12:46
anybody, like it's such intimate symptoms to
12:48
be kind of like talking about, especially if
12:51
there is any hesitancy or fear. So I think like
12:54
making sure you really do have that relationship
12:56
that you're okay to bring it up. But also if
13:00
you are feeling like that, it's maybe good to
13:02
bring someone to your appointment with you that
13:04
can kind of like remind you, like keep on track,
13:07
be honest, you know, like really just say your
13:10
fears and stuff like they are there to help you.
13:12
Of course, they want what's best for you, but
13:16
you might not want that option. So I think it's
13:19
important to just kind of talk through everything.
13:23
I think what you mentioned, that's actually a
13:25
really great tip about sort of having somebody
13:27
on your side. that can hold you accountable.
13:30
I'm pretty active in the Reddit community as
13:32
well. And one thing that I really see people
13:34
struggle is with their doctors, you know, even
13:37
with GIs that potentially are not super well
13:40
versed in IBD. And, you know, a lot of people
13:44
sort of, they don't have the trust in their doctor.
13:47
And then a lot of the specialists, they really
13:49
don't seem to be very proactive. And this is
13:53
why I asked you this question, because I want
13:56
people to hear that. First of all, there are
13:58
really good IBD specialists and medical teams
14:01
out there. And second, it's very important, I
14:05
think, to also raise your voice and stand your
14:09
ground and fight for your symptoms. And so it's
14:11
very interesting that you mentioned that you
14:14
actually hid some details about your symptoms
14:17
from your doctor, but you yourself said you were
14:21
young. So maybe to make the transition there
14:23
as a 16 -year -old, as an 18 -year -old, what
14:27
was it like to live with this disease? Because,
14:31
I mean, I was diagnosed at 29. So for me, I really
14:36
was never embarrassed to talk about it because
14:38
it just tore my life apart, essentially, physically
14:41
and mentally. But I'm assuming that 16, 18, you
14:45
know, that young age, it's completely different.
14:46
So how did you navigate a disease, you know,
14:49
when you look back as a young adult? yeah so
14:54
I mean obviously like I had my mom and her support
14:56
and her understanding which is great but I didn't
15:00
know anyone around my age who had IBD or had
15:05
any health concern at all like in my friend group
15:09
and even at my school like there was not really
15:11
anybody who would talk about like oh they have
15:14
diabetes or celiac disease or like really anything
15:18
so that felt really isolating and then even when
15:22
I would have to miss school or, you know, I was
15:26
doing sports. So sometimes I would have to miss
15:27
practices and stuff like that. I would tell my
15:32
diagnosis, but that was usually like the extent
15:35
of it and not diving into the symptoms because
15:39
it just felt like, yeah, embarrassing or something
15:42
that like nobody else talks about or nobody else
15:44
is going through to understand either. So I definitely
15:49
feel like it was isolating. to be worried and
15:53
like have that fear of kind of judgment or like
15:56
oh I'm the only one going through this so everyone's
15:58
going to be like oh what is she talking about
16:01
you know just creating distance from like friend
16:06
groups because I was the only one kind of going
16:09
through it and I felt that in university too
16:12
a little bit at the start but then I started
16:16
sharing a little bit more here and there and
16:18
what made me kind of end up leaning more on people
16:23
and that kind of support was just getting back
16:26
feedback that like it's okay or people would
16:29
listen with no judgment and empathy and then
16:32
i was like okay maybe it is okay to kind of talk
16:35
about it more like explain more so so what you're
16:40
saying is and please correct me if i'm wrong
16:42
is that you found your courage to talk about
16:44
colitis or you found your voice by seeing people
16:49
react to you more openly or what else did you
16:55
do to sort of, you know, come up to the point
16:58
where today and you're basically advocating,
17:01
right? Or you're raising awareness. Was that
17:04
maybe, was it the surgery or was there something
17:06
else sort of that flipped that switch and that
17:09
made you sort of really comfortable to go out
17:11
and, you know? fight and shout as as an IBD warrior
17:15
you know as we call ourselves yeah um I think
17:19
a couple things like one just growing up and
17:22
getting a little bit older and kind of realizing
17:24
that not everything really matters and also if
17:28
somebody does want to judge who I am as a person
17:32
from a diagnosis I probably don't really want
17:34
them to be in my life in the first place um so
17:37
that was kind of like a mental switch and yeah
17:39
just having people reacting well because in my
17:43
mind I wasn't expecting that accepting reaction
17:47
so it prevented me from you know being honest
17:51
and then when I did kind of start open that door
17:54
and kind of start letting some stuff out and
17:57
they were just really accepting and understanding
18:00
it kind of made me realize that okay probably
18:03
a lot of people will take it in a good way and
18:07
again if they don't that's kind of their problem
18:09
not my problem So that was a big mental shift.
18:12
And then also I think the biggest one was the
18:15
surgery because some of the staff was kind of
18:18
like very pushy on don't do surgery, keep trying
18:23
this medication, you're so young, blah, blah,
18:25
blah. So that was kind of like, yeah, I'm so
18:29
young, you know, but I'm just struggling to survive.
18:33
So it was just a kind of a weird narrative. So
18:35
I was like, other people are so young also going
18:37
through this. They probably feel the same. I
18:40
didn't have anyone that I knew around my age
18:43
when I was in high school. Even joining some
18:46
like support group things that they have, like
18:49
Crohn's and Colitis Canada, the age group was
18:51
mostly older. So again, that was kind of the
18:54
drive to be like, maybe I should just speak up
18:56
and share and kind of be the person who I needed
18:59
to see when I was younger. just, you know, help
19:04
other people feel less alone because it is so
19:06
isolating at a young age. So I think the combination,
19:11
but definitely surgery, it pushed me to get more
19:15
actively involved. Like I started volunteering
19:17
and started advocating and like doing more things
19:19
because I felt like it almost gave me a purpose.
19:24
two keywords you mentioned, you know, getting
19:26
older and surgery. And then another thing that
19:28
I found sort of really surprising is that you
19:30
were at the hospital and I'm sure you were advised
19:33
or it was recommended to you to have the surgery.
19:36
And you said some staff members advise against
19:39
surgery. So what was it that made you go ahead
19:45
with it? Was it really your GI? Was it maybe
19:48
your mom? Was it just that, you know, you couldn't
19:50
take the symptoms anymore? Eventually, What led
19:55
you to make that decision to have the surgery?
19:59
So I'm kind of giggling here because nobody actually
20:03
advised me to have the surgery. Basically, I
20:07
was in the hospital for a week in March with
20:11
a flare -up, switched medications, was doing
20:13
great for two months, then was in a really bad
20:15
flare -up in the hospital for another week in
20:18
July. And I was just in a flare -up for months
20:21
and months and months. I was on really high dose
20:25
prednisone. It wasn't doing anything. I was just
20:27
getting so sick. You know, my symptoms were so
20:30
bad. I was having a fever every day. I was throwing
20:33
up. I was going to the bathroom like literally
20:36
constantly. I could barely leave the house and
20:39
I was so weak and all that stuff, right? So I
20:42
landed in the hospital again in October. And
20:46
this time, like I was still, I was just getting
20:48
so much worse. They had me on all these different
20:50
medications, had to be on TPN because I wasn't
20:54
absorbing anything. I could barely eat. And it
20:59
was actually, it was my mom. She was the one
21:02
who first sat me down and she was like, I know
21:05
you might not want to hear this, but like, have
21:07
you considered that maybe it's time to have surgery?
21:11
And I was like, I don't know. Like, I'm scared.
21:15
I don't know how life's going to be, whatever,
21:17
whatever. So she obviously had had the surgery.
21:21
So, you know, she kind of gave me her perspective
21:23
on that. And then we kind of came up with a list
21:25
of pros and cons for me personally to do it.
21:29
And the list of pros was much significantly longer
21:33
than the cons. So basically, my mom and I are
21:37
the one who brought that up to my GI doctor.
21:40
He like came in to do rounds or whatever. I was
21:44
like you know I think I want to get surgery and
21:48
he was the first person who said to me uh are
21:52
you sure like you're pretty young I don't want
21:54
to have to give you a stoma you should be out
21:57
enjoying your life not worrying about surgery
21:59
and then I was like You're very right. I should
22:02
be out enjoying my life, but I've literally lost
22:05
this entire year to colitis. Like I've been in
22:08
and out of the hospital. I've been so sick. Haven't
22:10
been able to do anything with friends or family.
22:12
Like I'm so done. I can't keep doing this. And
22:16
his potential solution was to try another medication
22:20
that might work in three to four months. And
22:26
I really, truly did not think I had three to
22:28
four months. I was rapidly losing weight. Like
22:31
I was just skin and bones. I could barely have
22:34
the strength to like stand up and walk around.
22:36
And it was just really bad. And I wanted to get
22:39
out of the hospital. I was already there for
22:41
a week and a bit and just torturous in the hospital,
22:44
as I'm sure you know. So I really wanted to get
22:47
out of the hospital. And I didn't think that
22:49
that would be possible without surgery. so basically
22:53
he had a stoma nurse come talk to me and like
22:56
you know do an assessment kind of explain things
22:59
make sure that I was like mentally knew what
23:02
I was getting into I guess and then he came back
23:04
and I was like yeah I really still don't want
23:07
my intestine like please take it out I actually
23:11
like I need you to take it out I was basically
23:13
begging at this point which very interesting
23:17
because that was always my worst fear when I
23:19
was first diagnosed. And now I was at the point
23:21
where I just like, I could not take it anymore.
23:23
I'd already been through so, so, so many medications.
23:26
And it was like, even if this does work for a
23:30
bit, it probably won't work forever. I just had
23:33
that perspective because everything else had
23:35
failed. Was it just one surgery? Take us through
23:38
a little bit of the time of how that happened.
23:39
So when I first, you know, told the surgeon like
23:43
I need you to do this and he finally agreed he
23:46
was talking through everything with me and he's
23:49
like okay perfect so like in three months you
23:51
can come back and we can create the internal
23:54
pouch and then three months after that you can
23:56
have it reconnected and you'll have a jay pouch
23:58
and whatever and at the time I was in my third
24:02
year of university and luckily like it was all
24:07
online school at this point because of COVID
24:09
so I was still doing school in the hospital so
24:13
I was like so determined I was like I do not
24:17
want to be a year behind like I still want to
24:18
graduate with my friends I was so determined
24:20
but I was only able to do that because everything
24:22
was online but anyways so I told him like you
24:24
know I at least want to finish my third year
24:26
before getting like two more surgeries so I'm
24:29
definitely not doing that in the next year and
24:31
he was like okay no worries we can do a follow
24:34
-up in the summer like when you're on your summer
24:36
break and talk more about those other two surgeries
24:40
So that summer came and went. I got a research
24:44
job at my university, so I never went home that
24:46
summer. So I never had that second talk. But
24:50
as time went on, I kept thinking about, do I
24:55
do the surgery? Do I not do the surgery? And
24:58
like I said, seeing my mom growing up with her
25:03
J pouch, like certain struggles of still needing
25:06
to be near a bathroom for. you know like you
25:09
can go on some trips and stuff but still kind
25:12
of there there's still some level of urgency
25:14
because it's not like you have perfect function
25:17
and just the risk of like the blockages and the
25:20
scar tissue and somewhat of a decreased diet
25:23
and stuff like that and then I looked at myself
25:25
and I really didn't have any of those issues
25:27
I could eat I still do eat essentially everything.
25:31
I don't always need to worry about being near
25:33
a bathroom at all times. So I started thinking
25:35
more and more about maybe just never doing the
25:38
surgery. And for me, the urgency piece was one
25:44
of the worst. symptoms especially like mentally
25:47
because I would always have to be thinking about
25:49
it always worried like can I go do this activity
25:51
will there be a bathroom there you know all that
25:53
stuff then I just was like maybe I just will
25:56
never do it but we'll see because my surgeon
25:58
had told me even if I want I could do it like
26:01
five ten years from the surgery so then more
26:08
recently I had a scope of like the rectal stump
26:12
that is still there holding the spot for the
26:14
pouch and it is covered in scar tissue really
26:20
inflamed apparently actually a scope three years
26:25
ago I was diagnosed with divergent proctitis
26:28
but they never told me they told me it was slightly
26:32
inflamed but still normal and they never gave
26:36
me any medication or any follow -up So then earlier
26:39
this year when they were like, oh yeah, like
26:41
how have you been treating your divergent proctitis?
26:44
I was like, my what? Like I had no idea. But
26:48
anyways, long story short, they don't think a
26:51
J pouch would even be successful anymore because
26:53
of everything going on down there. But thank
26:55
God I already came to that conclusion myself
26:57
because imagine this whole time I was like, oh,
27:00
it's fine. I'll have the J pouch surgery soon,
27:03
like whatever. And then I wasn't able to. At
27:07
least that is the only good side of them not
27:11
telling me. But yeah, so I only had the one surgery.
27:13
I'm not going to have the J pouch. I might have
27:17
to have the like rectum taken out and sewn up
27:20
like the Barbie surgery or whatever. But it's
27:24
not really like urgent or something that is planned
27:26
in the near future. Some people, they think that,
27:30
hey, I have my colon taken out. My colitis is
27:33
cured. You know, I will never feel anything again.
27:37
But that's not always the case. So can you just
27:39
take us through your life right now and also
27:43
how it is going symptom -wise? And if so, how
27:47
are you navigating that? For sure, yeah. That's
27:50
honestly a misconception that I myself had at
27:54
the start, especially because after the surgery,
27:57
I felt like a million times healthier. You know,
28:02
like all those other symptoms, like the pain
28:04
and the not being able to eat and the weight
28:05
loss. I could eat again I was gaining weight
28:08
back physically I was feeling better and I wasn't
28:11
having any symptoms at all for quite some time
28:14
like two maybe even three years and then recently
28:18
some of those kind of like extra intestinal manifestations
28:22
of the IBD have showed up a lot more and yeah
28:26
when my doctor was like oh it might be your IBD
28:28
I was like but I don't have my colon she's like
28:31
yeah you still have IBD and I was like why did
28:33
nobody tell me this yeah so This year has been
28:37
kind of a lot of up and down with the symptoms,
28:41
mostly like joint pain is kind of become the
28:44
most significant one. And it really sucks because
28:48
sometimes I feel like I'm 80 years old and I'm
28:51
like, I'm so young to be having like all these
28:53
different joint pain problems. But again, it
28:57
goes back to the whole thing. Like a lot of people
28:59
just think, oh, it's a stomach ache. Like, you
29:02
know, you just. you have some digestion problems
29:04
and that's it but it's truly like so much more
29:08
than that I think joint pain is really like the
29:11
main one but like I haven't had any problems
29:14
with like my skin or eyes or kidneys but like
29:17
that's another route that people can have some
29:19
like issues with so yeah so a journey that is
29:26
not approaching the end quite quite yet, right?
29:30
So yeah, I see. Now reflecting back on the time
29:35
that you were diagnosed, all the flaring, even
29:38
the surgery, how has this disease changed you
29:42
as a person? Yeah, that's a really good question.
29:47
I mean... I think personally, I was always like
29:50
really on the empathetic side, even as a kid,
29:53
like I would see somebody going through something
29:56
or even just looking a little bit sad and I would
29:58
always kind of like feel that myself for them.
30:00
But I think definitely has just really changed
30:04
my perspective and made me even more like empathetic
30:10
or understanding, I guess, especially because
30:11
with things like colitis and other autoimmune
30:15
kind of things. the majority of it is very much
30:18
invisible and so from the outside you can't really
30:21
ever see what's going on and the amount of times
30:25
I've had people say like oh but you don't look
30:27
sick or you look fine or even like saying that
30:30
they wish that they couldn't gain weight or that
30:33
they would lose weight like how I was even though
30:36
like that was not my goal you know I was super
30:38
unhealthy but from the outside they're just like
30:40
assuming something that isn't true so I think
30:42
that has really changed like I've never give
30:47
someone a story until I hear their story I never
30:50
try to assume because you really never know what's
30:53
going on behind the scenes for anybody even like
30:57
if someone's having a really bad day or someone's
30:59
just like so rude to me I always try and still
31:01
pause and be like okay it's probably nothing
31:04
to do with me they're probably going through
31:06
something on their own like everybody has their
31:08
thing so I think patience and understanding is
31:11
probably like the biggest one You earlier talked
31:14
about a misconception in regards to IBD. So in
31:20
your mind, what are some other misconceptions
31:23
about colitis or IBD that are common? Yeah. So
31:29
I know I touched on this one already, but just
31:32
the idea that it's kind of only the stomach or
31:34
like, oh, it's the same as IBS. You're only like...
31:40
poor digestion or stomach aches kind of thing
31:42
but it's really again whole body can affect everything
31:46
every aspect that's a big one and then I think
31:50
one that I keep seeing more frequently now that
31:54
like social media is such a big thing is a lot
31:58
of people kind of assuming or sharing that you
32:03
can just cure your colitis if you just change
32:06
your diet or if you just do this one quick fix
32:08
or you just exercise more or you know all these
32:11
things and that's not to say diet lifestyle stress
32:14
all those things are very important they can
32:17
help you stay in remission or opposite if it's
32:20
bad they can make a flare come but the thing
32:25
with colitis is it is chronic like even me I
32:28
don't have my colon I still technically I still
32:30
have colitis so it kind of it's one of those
32:34
things where it's like People maybe are assuming
32:36
that it's more in their control than it actually
32:39
is. All those things can help and make a difference.
32:42
But even if you're in remission for years and
32:45
years and you're doing everything absolutely
32:47
perfectly right, all your diet, all your exercise,
32:50
you could end up in a flare -up randomly at any
32:53
point. And I think that's part of the missing
32:57
piece when people talk about it. They're like,
32:58
oh, I healed my symptoms because I changed my
33:01
diet and that's great. But you can still have
33:04
a flare -up. any time, any point. So that's a
33:07
big one. Like it is, it is for life, you know?
33:10
And also I've seen this kind of discourse that
33:13
colitis is less severe than Crohn's and you know,
33:18
Crohn's is everywhere, like throat, stomach,
33:21
small intestine, large intestine, mouth. So you
33:24
can have a lot of problems with that, but to
33:27
say that it's necessarily worse is not. always
33:30
true because you can have mild Crohn's, but you
33:32
could have severe colitis and you could be way
33:34
more sick with severe colitis. Right. So it just
33:37
really depends. Like every, everyone's different.
33:40
Yeah. Yeah. So we agree then that, you know,
33:43
switching to a kale smoothie diet is definitely
33:47
not going to cure your colitis. Oh, I agree with
33:50
you on that one. Yeah. Okay, great. So you've
33:55
had great support, you know, from your mom and
33:59
I'm assuming she was probably the central support
34:03
person that you could rely on during your journey
34:08
with IBD. But as you also kind of mentioned,
34:13
a lot of people don't really know what this disease
34:16
is, what this disease does. And so it can be
34:20
very difficult for people that are not going
34:23
through the same things that we're going through
34:24
to talk about it, but also... to react appropriately
34:28
in regards to us, right? Their loved ones, their
34:31
friends. So what words of advice do you have
34:34
for friends and family of someone with IBD? I
34:42
think a really big one is to do research on your
34:46
own because it can become very exhausting to
34:51
continuously have to explain and re -explain.
34:55
what diagnosis you have, what it is, what it
34:58
means, what treatment they can do for it, what
35:01
the symptoms are, all those things, right? And
35:03
of course, it's okay to ask questions to your
35:07
friend or family who has it to kind of gain a
35:09
better understanding, but it's really nice when
35:12
people kind of do a little bit of their own.
35:16
research to kind of just gain a better understanding
35:18
in general especially with some of those symptoms
35:21
that maybe people won't be so forthcoming with
35:23
then you can kind of better understand and just
35:26
really like listening without judgment and being
35:30
able to be okay and like be adaptable with change
35:34
of plans or you know canceling plans things like
35:38
that because It can seem like when you're going
35:43
through a flare, like, oh, I'm the problem. Like,
35:46
I'm always sick. I can't do all these things.
35:47
But really, it's not like you asked to be in
35:49
a flare. So if your friends and family can be
35:52
like validating and supporting, like, it's totally
35:54
OK. It's not your fault. Like, we can do something
35:56
else or we can do it like next time. That is
36:00
very helpful because when you're sick, sometimes
36:02
you really don't know what you need or what you
36:04
want. But just like understanding and. compassion
36:09
go a really long way. It's very interesting that
36:13
you mentioned doing research on your own, especially
36:15
if you're someone who doesn't have the disease,
36:17
but you either live with someone or you care
36:21
for someone who has the disease. And if I may
36:23
build on that, I think you're absolutely right.
36:25
do research, but be careful to not take that
36:28
research and then potentially sort of bombard
36:30
the person, you know, with IBD, with what you've
36:33
learned. I think it's more about do the research,
36:35
but for yourself, right? So that you can somehow
36:39
relate to it, you know, even though you'll never
36:41
be able to sort of feel the same things that
36:43
we feel, because I think there's a danger, of
36:47
course, that then, you know, it can come patronizing
36:51
very quickly. But I totally agree with your point
36:53
that I think that's a great way to get an onboarding,
36:57
you know, onto IBD and then be able to at least
37:01
to some extent understand what the person that
37:07
you're caring for is actually going through.
37:10
Yeah, for sure. Yeah, definitely a good point.
37:12
Like more research just to understand on your
37:16
own, especially if they're not sharing like every
37:18
single symptom they go through or all the things
37:19
like that or even just. medication side effects
37:22
like just so you can kind of gain a little bit
37:25
of perspective but yeah not like oh my god i
37:27
learned this what about this are you okay with
37:29
this so you know yeah that's a good point if
37:33
you could speak to yourself at age 16 on the
37:40
day of your diagnosis or shortly after the diagnosis
37:42
what would you tell yourself that is a you know
37:47
that's a good question because there's so many
37:50
things you could say I think the main thing I
37:53
would say is like you're gonna get through it
37:57
like you'll be okay it might seem like you're
38:00
not gonna be okay especially at certain times
38:04
when you're sick and you're missing out on everything
38:06
and you don't feel like you're living you're
38:08
just surviving but like you're gonna get through
38:10
it you'll be okay you just have to keep going
38:13
even if it feels like you're going nowhere just
38:15
keep going and then to kind of go back to the
38:20
whole relationship with your gi um just being
38:25
more comfortable with being open and honest like
38:28
i think that has such an emotional and mental
38:30
health aspect that i could have really used when
38:33
i was younger so i think that would be something
38:35
that i would kind of bring up to younger me So
38:38
my last question then is looking into the future.
38:41
And even though I know it's a very hard one to
38:44
answer, I do believe that everybody has at least
38:46
some sort of hope or feeling about this. Do you
38:50
think we'll see a cure for IBD during our lifetime?
38:54
You know, like you said, it is hard to answer,
38:57
but I really do feel hopeful that we will. There's
39:00
been quite a few recent kind of discoveries about
39:04
IBD. in the news and in the research world. And
39:09
even now, like you'll see a new medication kind
39:12
of come forward to the market. So I think the
39:16
possibility is really high and it's getting higher
39:19
and higher. Crohn's and colitis is really increasing
39:22
in the modern world in our day and age. So I
39:27
really do feel hopeful. I would honestly be more
39:30
surprised if there wasn't at some point. I'm
39:34
completely with you. I'm not really sure this
39:37
might happen for the next, you know, five to
39:39
10 years, but I do believe that, you know, we
39:42
are getting closer to finding a more permanent
39:46
relief for people that don't necessarily involve,
39:48
you know, biologics or continuous. periods of
39:52
remission and flaring and going back and forth.
39:54
So I'm hopeful as well. And this is exactly how
39:58
we want to end with hope and sort of a positive
40:01
outlook for the future, not just for us, but
40:04
also everybody else who is facing IBD. So Hannah,
40:07
this was an absolutely fascinating conversation.
40:09
And I want to thank you very, very much for being
40:12
here today and talking to me. I think the world
40:16
needs... more IBD warriors like you. And I'm
40:20
very happy that you're so outspoken about it.
40:23
I encourage you to continue doing that because
40:26
I do believe that we are helping other people
40:29
who have been recently diagnosed or who are living
40:32
with this disease for a long time to get through
40:35
tougher times or periods where they feel isolated
40:38
or embarrassed. So I think what we're doing is
40:42
very, very important and we need to keep doing
40:44
this. So thank you so much for what you do. Yeah,
40:48
thank you so much. And I really appreciate you
40:52
being here. And I'm going to sign off then with
40:55
saying I wish you the best of luck. And I hope
40:57
that you are able to find a way or remedies for
41:00
your current symptoms. And other than that, you
41:03
know, keep enjoying that life with IBD and all
41:07
the best. Thank you so much. Thanks for having
41:09
me. It was great. Thank you as well. That's it
41:13
for today's episode of Talking Sh**, presented
41:16
by Colitis Unfiltered. I'm Frank Klebring. And
41:19
if this hit home or hit your gut, do us a favor.
41:22
Subscribe to the show and follow us at Kaleidos
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