Latest / Crohn's & Colitis Unfiltered / From colitis to cancer: Nadia’s 25-year IBD struggle

Transcript

From colitis to cancer: Nadia’s 25-year IBD struggle · Crohn's & Colitis Unfiltered

0:02
When I was pregnant, I felt great. I had no symptoms,
0:06
no flares. So on my own accord, I stopped all
0:10
of my medications, which worked during my pregnancy.
0:13
But then when my daughter was about, you know,
0:15
three and a half, four months old, my body flared
0:18
like with a vengeance. This is Nadia, who got
0:21
diagnosed with ulcerative colitis at age 15 in
0:24
Toronto, Canada. After managing her digestive
0:27
disease for 25 years, Nadia received a colorectal
0:31
cancer diagnosis in 2022. Today, she's telling
0:35
us all about her IBD journey and how she navigates
0:37
life with an ostomy. This is Talking S***, presented
0:40
by Colitis Unfiltered. My name is Frank Tabering,
0:43
and Nadia, welcome to the show. Thanks so much
0:46
for having me. To set the context, I would like
0:50
to start off and jump right into your IBD journey.
0:53
So I think in a few sentences, if you could just
0:56
give us an overview of the timeline from diagnosis,
0:59
but also to how you are today. So I was diagnosed
1:05
with IBD, specifically ulcerative colitis, when
1:08
I was 15 years old. I was having some symptoms,
1:12
you know, for a few months. And then when I finally
1:14
had a colonoscopy just a couple weeks before
1:18
my 16th birthday, that's when I got my IBD diagnosis.
1:22
So I lived with IBD for about 25 years, right?
1:27
I did, you know, clinical trials, different medications,
1:30
all of that. 2022, I was diagnosed with colorectal
1:35
cancer, early stages, and now I live with a permanent
1:39
ileostomy. In the time sort of since your diagnosis,
1:43
before your cancer diagnosis, were you in remission?
1:47
Were you stable? Did you have flare -ups? Like,
1:50
how did you feel over that long period of time?
1:54
So it was a long period of very up and down.
1:57
So with IBD, you know, flares can come at any
2:00
time. And I went through quite a few of them,
2:04
some of them, you know, more severe than others
2:07
and treated, you know, with a number of different
2:09
medications. So, you know, it was a constant,
2:12
you know, roller coaster, right, of emotions
2:14
for sure. And, you know, I did go through some
2:18
periods of remission, you know, especially before
2:21
my cancer diagnosis, I was at. Like, you know,
2:23
a four and a half, almost five year remission,
2:26
right? So that was a big win for me. And just,
2:30
you know, it took a lot out of me emotionally,
2:32
right? To be constantly, you know, worried about,
2:35
you know, when I'm going to flare, if I'm going
2:37
to flare and, you know, when that kind of the
2:39
ball was going to drop. So what I like to do
2:42
typically on this show is I would like to take
2:44
the audience on a journey. And then usually I
2:46
start with the past, you know, look at the present
2:48
and then go into the future. So let's go back
2:50
to the basics, essentially. What were your first
2:54
symptoms, you know, that showed up where you
2:56
thought, you know what, something is really wrong
2:58
here. I better get this checked out. Take us
3:00
through that a little bit. So my first symptoms
3:02
were, you know, intense abdominal cramping, right?
3:06
Having to use the washroom a lot, having, you
3:08
know, blood in my stool. And, you know, the blood
3:11
was like just so scary, a huge red flag. And,
3:14
you know, that's when I knew this, something
3:16
has to be checked. Putting yourself back into
3:21
the moment where you were diagnosed, how did
3:25
the doctor, if you remember, and especially you
3:27
were 15, so you take these news completely differently
3:31
than somebody age 29 like me or even older, how
3:34
did the doctor break the news to you? Do you
3:36
remember that? And also, what went through your
3:38
mind at that very specific time? So I remember
3:43
being in hospital and I remember, you know, my
3:45
parents being with me, you know, I was still
3:47
young, I was a minor. And so they told my parents
3:50
as well as myself, like, I didn't know really
3:53
what to expect. All I knew was that I was going
3:56
to be having to take medication and take that
3:58
medication daily. So to manage my disease. So
4:03
it was scary. I have to say it was very scary
4:06
because, again, I wasn't familiar at all with
4:09
the with the diagnosis. So not having social
4:12
media or anything at the time. Right. The Internet
4:15
was not really, you know, a place for me to to
4:19
search. So all I had really was my doctor. So
4:24
that's actually a very good point because I always
4:26
talk about educating yourself, especially if
4:28
you have a doctor that might not go into too
4:30
much detail, right? And then I would say people
4:33
should be very careful about what they read on
4:36
the internet as well. But with the lack of the
4:37
internet, so you said you only had your doctor.
4:39
Does that mean that your doctor was somebody
4:42
that you could trust from the beginning, somebody
4:45
that was proactive in terms of trying to attack
4:48
the disease? What was your relationship with
4:50
the doctor in the first, you know? months or
4:53
years even at the beginning right because i also
4:57
was so young i My only instinct was to just trust
5:01
them and just do whatever they said. Right. I
5:04
didn't really do too much of my own research
5:07
at that time until I got a little bit older,
5:09
until I was more familiar with different resources
5:12
that were available to me. Right. There were
5:15
some support groups that I found online. And,
5:18
you know, through that, I also found, you know,
5:21
someone that I actually went to high school with
5:23
that also had the disease. And, you know, we
5:25
ended up being in the same clinical trial like
5:27
that. whole kind of thing so um that being said
5:32
right like in terms of trusting my my physician
5:35
at that young age yes i did have a lot of trust
5:38
in my physician and i just kind of did whatever
5:41
she told me to do at the time so we talked about
5:45
it already 15 is a very young age especially
5:48
to be confronted with such a this brutal disease
5:51
if you look back not just age 15, but also the
5:55
following years, sort of really those golden
5:56
teenage years, how did you navigate the disease
5:59
physically, but also mentally? At the time, I
6:04
was super embarrassed and not open at all about
6:07
my disease, especially because of the nature
6:11
of the symptoms. I didn't share that with anybody.
6:15
None of my friends knew. If I had a flare -up,
6:19
I would just be away from school sick. I never
6:23
disclosed what I was actually feeling or what
6:25
I was actually going through. own turn like took
6:30
a toll on me emotionally because I had to keep
6:33
everything in I mean my family knew of course
6:35
but it was hard to like you know keep all of
6:38
these kind of like secrets so to speak from my
6:42
close friends so then I'm assuming you also experienced
6:46
this feeling that a lot of colitis patients experience
6:48
no matter the age so this feeling of isolation
6:50
and just wanting to be alone right yeah yeah
6:54
that's for sure yeah so you had a period of 25
6:57
years that you were, like I said, on and off
7:00
remission, you know, and one thing that I kind
7:04
of like to ask is because this is something that
7:06
when I talk to people, they sometimes worry about,
7:08
and this is sort of like burning through treatments,
7:10
switching from one medication to the next. There's
7:13
this trend that for people with severe colitis
7:16
or moderate to severe colitis, very rarely you
7:19
hear about them being on one treatment and that
7:22
one treatment basically sticking with them for
7:24
life. So could you... Quickly take us through
7:26
some of the general treatments or medications
7:29
that you went through, you know, over the years
7:31
before you were diagnosed with colorectal cancer.
7:35
Yeah, sure. So when I first was diagnosed, I
7:38
was on a 5 -ASA anti -inflammatory drug called
7:41
Pentassa. So I did that. I was on Imuran. Prednisone
7:47
was prescribed to me for flare -ups, you know,
7:49
and then, you know, it came to a point where
7:52
prednisone wasn't really... working so much like
7:55
for in my flares, right? So I switched to biologic
8:00
medications. So the first biologic I did was
8:03
in a clinical trial for Humira. That didn't really
8:07
work for me personally. So then I went for, you
8:10
know, another few years of, you know, eating
8:13
a specific diet, trying different medications,
8:16
trying natural remedies, doing all of the things.
8:19
And, you know, I had When I was pregnant with
8:23
my daughter, after I had her, I had one of the...
8:27
most severe flare -ups I've ever had that lasted
8:30
you know almost a year because I was just trying
8:35
to do like so many things to try to get out of
8:37
that flare which you know some things helped
8:39
but eventually ended up going on a different
8:42
biologic which was Remicade and Remicade worked
8:45
for me for you know for again four or five years
8:49
then I you know became resistant to that medication
8:51
and that's when I was in my final, you know,
8:56
clinical trial, final medication before remission,
8:59
sorry, before my colorectal cancer diagnosis,
9:02
which was RINVOC. Very rarely do I find stories
9:08
or even information about pregnancy and ulcerative
9:12
colitis and flaring. So I'm very interested to
9:14
learn how you navigated pregnancy with colitis.
9:18
Of course, you don't have anything to compare
9:21
it to a pregnancy without colitis right before,
9:23
but how did you navigate flaring or dealing with
9:27
all the medication? Just take us through that
9:29
a little bit. When I was pregnant, I felt great.
9:33
I had no symptoms, no flares. So on my own accord,
9:37
I stopped all of my medications, right? Which
9:41
worked during my pregnancy. But then when my
9:43
daughter was about, you know, three and a half,
9:45
four months old, my body flared like with a vengeance.
9:48
You know what I mean? So, yeah. It was your decision
9:53
essentially to stop the medications. It's not
9:54
like the doctor recommended it. Like you could
9:56
have stayed on the medications throughout the
9:58
pregnancy without any. Brisk, right? That's right.
10:02
You mentioned that you went through high school,
10:05
I believe, right? With somebody that had colitis
10:07
as well. Do you feel like having that relationship
10:11
or that connection with that person, that was
10:13
sort of a springboard for you to open up about
10:16
the disease more? Or was there something else
10:19
in life, maybe just... just getting older, that
10:22
enabled you to actually come out of your shell,
10:25
to sort of beat your loneliness and to also openly
10:27
speak about the disease more. When did that happen
10:30
and why did it happen? Because of what? The person
10:34
that I mentioned that I went to high school with,
10:36
we ended up finding each other when we were in
10:38
the clinical trial. So it was many years after
10:40
high school was over. And so we just came to
10:43
learn that we both had colitis in high school,
10:46
but we both didn't know. Right. So we both had
10:49
the same approach of, you know, not telling anybody,
10:52
keeping it a secret, you know, being embarrassed,
10:55
feeling lonely. We all we shared all of those
10:57
sentiments. But in high school, you know, I started
11:01
dating my now husband. Right. And, you know,
11:04
I remember flaring pretty early in our relationship
11:08
and I. He was the actual first person, you know,
11:11
outside of like my immediate family that I told
11:14
about my diagnosis. And ever since then, he's
11:18
never, you know, judged me for it. He's never
11:20
always like took care of me. So I am very grateful
11:25
for that. So in terms of, you know, having somebody
11:28
to talk to, not somebody that actually had the
11:31
disease, but I did have him, you know, to talk
11:33
to and to navigate like, you know, through some
11:36
of the emotions. that I was having, you know,
11:38
outside of like my family. So you had periods
11:42
of remission during those 25 years, but you had
11:45
your flares and. I'm very active on the Reddit
11:49
community because you really have, it's a space
11:51
where people who are afraid to speak about it,
11:54
I guess, you know, around peers, family, this
11:57
is where they go to to ask questions. And one
11:59
of the questions that I just come see pop up
12:00
again and again is, hey, I'm flaring or have
12:03
my first flare or this flare is worse. How do
12:05
you guys deal with it? What are your tips and
12:07
tricks? So how did you navigate flares? Every
12:10
time I speak about IBD, I always say that IBD
12:14
is not a cookie cutter disease, right? So everybody...
12:17
is affected by IBD differently and what works
12:21
for one person may not work for the next. So
12:23
that's the beauty of having like an online community
12:25
or support system because you can see, you know,
12:28
what works for one person may not work for another,
12:31
but it gives you that, you know, opportunity
12:33
to try something you may not have tried. already
12:37
right so when I would be flaring first thing
12:40
I would do you know is just eat a very plain
12:43
simple diet right ensuring you know lots of fluids
12:47
and you know nutritious foods like for example
12:49
like bone broth or you know things that are easy
12:52
to eat easy to digest things that don't upset
12:55
my you know digestive system because it's already
12:58
you know on high alert so you know that those
13:02
would be like my basic like tips and tricks and
13:05
trying to avoid stress ensuring you know you
13:07
get enough rest because you know even in a flare
13:10
-up it's hard to rest as well because you're
13:12
always running to the washroom you're waking
13:14
up in the middle of the night going to the washroom
13:17
so like you're you're constantly constantly tired
13:20
right so ensuring that you get a lot of rest
13:23
and you know a lot of nutrients is really key
13:26
So definitely from what I'm hearing is you centered
13:30
the management of your flares around dietary
13:33
adjustments and making sure that you don't sort
13:36
of worsen any symptoms based on what you eat.
13:39
Maybe looking at your experience with colitis,
13:42
but also going through colorectal cancer, how
13:46
has this misadventure, if I can call it that,
13:51
changed you as a person? So I think personally,
13:56
like having my cancer diagnosis and then my living
14:00
with an ostomy has kind of really enabled me
14:03
to want to share my story even more. Right. When
14:06
I had IBD, you know, there's always the possibility
14:10
of the outcome to have an ostomy. Right. Because
14:14
when you you don't respond anymore to treatment
14:17
or, you know, you flare up severely, you would.
14:20
you know, may end up with an ostomy. So that
14:24
was always on my mind. And I have to say, like,
14:26
even when I was diagnosed with cancer and I knew
14:28
I was going to have ostomy surgery, I was initially
14:31
less concerned about the cancer and more concerned
14:34
about living with an ostomy because of the negative
14:36
stigma that I myself had associated with ostomies,
14:41
right? Like, you know, me being judged for it.
14:45
how the way that it looked, if it was smelly,
14:47
right? Like how I was going to manage my ostomy.
14:50
But I, you know, I had started my Gutsy Girl
14:54
Diaries, you know, Instagram account prior and
14:57
blog prior to my colorectal cancer diagnosis.
15:00
So, you know, already having a platform to share
15:03
with others in the same, you know, situation
15:06
or caregivers in the same situation really helped
15:10
me to, you know, navigate through my diagnosis.
15:14
You mentioned it. There's a lot of stigma around,
15:17
you know, living without intestines. So let's
15:21
break that stigma down. How are you living with
15:24
this today? And are you limited? Is there something
15:28
that you cannot do? And also, do you still have
15:32
issues sometimes? Because again, for some people,
15:35
it's like having surgery is not necessarily a
15:38
cure, right? For IBD, it can still be present.
15:41
So how are you doing? And what is life like for
15:45
you in this situation? So overall, I have to
15:50
say my ostomy gave me my life back, right? A
15:53
lot of things that I would be fearful of doing
15:55
with IBD. I now can do with my ostomy like for
16:00
example you know going on a road trip or you
16:03
know going to a concert and you know not having
16:06
to worry about urgency or you know finding a
16:10
bathroom or that kind of thing right I mean there
16:12
are still like the challenges that I have with
16:15
my ostomy in terms of you know dealing with ostomy
16:18
leaks or you know finding the right appliance
16:20
and ensuring like you know I have the right products
16:22
and being prepared you know there's all of that
16:25
but as a whole Right. Like, you know, health
16:29
wise, I am so much better. Right. My inflammation
16:33
is so much lower. My energy levels are so much
16:37
higher. Right. Because, you know, I no longer
16:39
have active IBD. Right. Although I do have other
16:44
IBD associated, you know, symptoms or conditions.
16:49
Right. I don't have like. that urgency, right?
16:54
And I think like for anybody with IBD or even
16:57
IBS, that feeling of urgency is like one of the
17:00
worst, worst feelings, right? And I remember
17:04
after my surgery, like being in hospital and
17:07
kind of finding it weird, like that I didn't
17:09
feel that, right? Because I was so used to always
17:13
being like so nervous, so tense, right? Because
17:17
of that urgency feeling and it's just terrible.
17:19
So I don't miss it. Right. Yeah. And so this
17:24
is very interesting because you feel something
17:26
for so long, you do something for so long and
17:27
all of a sudden from one day to the next, it
17:29
ceases to exist. How long did it take you to
17:31
actually get used to, well, the lack of that
17:34
feeling and this new feeling that you had? If
17:37
I had to say something, I would say like six
17:39
months, right? Because sometimes too, like even
17:42
like the whole adjustment with, you know, having
17:44
an ostomy and doing different things with my
17:47
ostomy, right? Like I had to take it like...
17:49
Little things at a time, like, for example, traveling
17:52
or going swimming or, you know, just because
17:55
I wanted to ensure that I kind of understood
17:58
everything that went along with with having the
18:01
ostomy. Right. So, yeah, I would say about a
18:04
six month period, like it took me to really feel
18:07
like, oh, wow, like I, you know. I don't have
18:11
to go to the washroom like I used to kind of
18:13
thing or I don't have those those feelings that
18:16
I used to. So we can summarize this again. And
18:20
I think it's very important to focus on this
18:23
is like living with an ostomy is actually completely
18:26
okay, right? Yes, it is. It is. I mean, it does
18:30
have its challenges, but overall, it's very possible.
18:34
And you can, you're not limited in doing anything
18:37
that you don't want, you know what I mean, that
18:39
you want to do. During that period, and especially
18:42
getting used to the ostomy as well, how has that
18:44
impacted like your Your own body image and also
18:48
your relationship with your husband, in what
18:51
ways has that sort of impacted you or affected
18:54
you? So, you know, for me, it was a very personal
18:58
thing, right? Like I do share about my ostomy
19:01
online. I do show my ostomy online. That took
19:03
a while as well. But, you know, my husband never
19:06
made me feel uncomfortable or anything like that.
19:10
Like he always embraced it. I mean, he always
19:11
like does my ostomy pouch changes with me, like,
19:14
you know. And it's just that extra level of,
19:18
you know, care and support is, you know, so,
19:22
so important. Right. And navigating, you know,
19:25
even through IBD, through any kind of like, you
19:28
know, health concern or health issue, I think
19:31
is super important. Right. And, you know, in
19:33
terms of my body image, like it took me a long
19:36
time to accept, you know, how my body would look.
19:39
And even now, like looking back at old pictures
19:42
where I don't have the ostomy like it. it's kind
19:44
of foreign. Like I, sometimes I forget that how
19:47
my body looked before. Right. But my husband
19:51
says like, you know, sometimes I don't realize
19:54
it, but you know, he says that I seem more confident
19:57
in my, in my own skin or in my own body now than
20:01
I did before surgery. So, you know, I feel like
20:06
that's a positive thing. Right. And I'm not as
20:09
embarrassed anymore as I was when I first got
20:12
it. Like when I first got my ostomy couch, I
20:15
was, I would dress in such a way to always kind
20:18
of try to hide it or, you know, make, you know,
20:21
look normal. Right. So, yeah, it's been, it's
20:26
been quite a journey in terms of body image.
20:28
You know, it's still a struggle every day, but
20:30
overall it's good. Yeah. So when I. reflect on
20:35
my own IBD journey and what I went through, I
20:38
always look at ulcerative colitis or IBD as a
20:42
blessing and a curse. In what ways do you relate
20:46
to that train of thought? A blessing in the sense
20:51
of, you know, it's kind of like a red flag or
20:55
an alert that, you know, we... all have just
20:57
one body and we really have to do our best to
21:00
take care of it right and to nurture it and to
21:02
give it what it needs to survive right like the
21:06
body is like an amazing machine right and I think
21:09
it's just so important to give it the care right
21:13
and to you know Be mindful of what you put in
21:16
your body. Make sure you move your body and keep
21:19
it healthy. You know, certain things are outside
21:22
of our control, right? Like an IBD diagnosis
21:25
or a cancer diagnosis or, you know, certain illnesses.
21:28
But what we can control and in terms of what
21:31
we put inside our body and our output, I think
21:33
is important. Very well put. I completely agree
21:37
with you. For people that are out there that
21:40
are struggling, who are afraid, who don't have
21:45
the disease under control, what is your message
21:49
to those people? So my message is, you know,
21:55
one day at a time. Right. And to just focus on,
21:59
you know, the things that are working. Right.
22:03
Sometimes it's hard to, you know, kind of get
22:05
out of your neck out of a negative mindset, like
22:09
when you're in a flare and thinking, you know,
22:11
I'm never going to get better. I'm never going
22:12
to, you know, do the things that I want to do.
22:15
Right. But to always, you know, persevere and
22:18
to never give up. So you've been with IBD for
22:22
a long, long time. And of course, times have
22:25
changed. But in some areas, times have not changed,
22:29
especially when it comes to misconceptions in
22:31
regards to IBD, colitis, ostomy. What do you
22:35
think are some common misconceptions about IBD
22:39
out there still today? I think some common misconceptions,
22:43
right, which I... I speak to as well, you know,
22:47
the whole notion of like, you know, somebody
22:50
like doesn't look sick, right? So, you know,
22:53
sometimes it's questioned in terms of, you know,
22:56
like, how come today you're able to go out and
22:58
the next day you're not, right? Like, you know,
23:01
so there's a lot of like, you know, misunderstandings
23:04
or misconceptions around, you know, the nature
23:08
of the disease, right? And, you know, how can
23:11
it be like so up and down, right? And I think,
23:14
you know, just having the opportunity to share,
23:20
right. Just really gives perspective, right.
23:22
For other people who may not know much about
23:25
IBD that, you know, I kind of like a day in the
23:28
life, right. That, you know, some days you can
23:31
do all the things and other days you just really
23:33
can't. Now, the last thing that I want to mention
23:37
in regards to the past is if you could go back
23:40
and you could speak to yourself, your, 15 year
23:47
old on diagnosis day what would you say to yourself
23:51
i think i would say to myself not to worry that
23:57
everything will be okay and to always you know
24:01
look at the bright side of things and to stay
24:03
strong so sometimes keeping it short and simple
24:08
is actually carries a lot more power than going
24:10
into a long tirade so i i can appreciate that
24:14
You are an advocate. You are doing your part
24:18
in raising awareness. You mentioned you're active
24:20
on Instagram. You started a blog and you named
24:25
it the Gutsy Girl Diaries. Can you tell us a
24:28
little bit about that, a little bit about what
24:31
it is that you do and the ways that you try to
24:34
support others with this condition or similar
24:37
IBD? Yeah. So I started Gutsy Girl Diaries in
24:41
2018 when I was in a severe flare up. And just
24:45
when I was starting my clinical trial with Rindvog,
24:48
I decided that I wanted to break the stigma and
24:53
also put myself out there. And, you know. identifying,
24:57
you know, what would I have wanted if I was just
24:59
diagnosed, right? And going back to, you know,
25:02
when I was 15, there was nothing available to
25:05
me, right? And some people find it so hard to
25:08
share, right? Like even when I post something,
25:10
I'll get a lot of people who won't comment on
25:12
the actual post, but they'll send me a private
25:14
message because they don't feel comfortable,
25:17
right? And that's the point, like creating, you
25:19
know, a safe environment for people to share,
25:21
to be open. And the word gutsy, I just got from,
25:26
you know, before starting my actual page and
25:29
like, you know, going on Instagram, going online,
25:32
anything like that had gutsy associated with
25:34
it, you know, referred to IBD, right? Right.
25:38
Or something like that. So I just kind of used
25:41
it as that. And I just went with it. And so,
25:46
you know, I share my recipes. I share, you know,
25:48
my day to day, what I do for exercise. you know,
25:52
my treatments, that kind of thing. And, you know,
25:55
it took me through like, you know, my colorectal
25:58
cancer journey and living with an ostomy. And
26:00
it's opened me to, you know, so many different
26:02
connections and people and, you know, partnerships,
26:05
you know, with, for example, Colorectal Cancer
26:08
Canada and, you know, other people and other
26:11
brands. Oh, that's really great. And so for everybody
26:15
who's listening or watching, we're going to put
26:16
links to all of that in the show notes as well.
26:18
So you can check out Nadia's blog and connect
26:20
with her individually as well. Do you have today
26:24
any regrets when you think about disease management
26:29
over the years, decisions that you took, maybe
26:32
decisions that you followed from your doctor
26:35
or doctors? Any regrets? I have to say, no, I
26:38
don't. I know that, you know, when we talk about
26:41
the doctor patient relationship, I think that
26:44
that's. super important. And I had a really good
26:47
relationship with my GI, you know, again, she's
26:49
known me since I was first diagnosed at 15. And,
26:52
you know, we had our rocky periods, you know,
26:55
when I kind of didn't want to take my medication,
26:58
I didn't want to do what she was telling me to
27:00
do. So we would, you know, butt heads, but it
27:03
ended up being a beautiful relationship in the
27:06
end. And it really helped me advocate for myself,
27:09
right? Because when you have that comfort with
27:12
your practitioner, It makes, you know, you sharing
27:16
exactly how you feel and your symptoms exactly
27:19
how you are. That's makes it that much easier.
27:24
Right. And I really feel that that's also kind
27:28
of what saved me. Right. Because if I didn't
27:32
feel as open to share with her when I was just
27:34
kind of feeling kind of off and it wasn't really
27:37
a flare and I don't know what I should do. Right.
27:40
You know, had I waited and, you know. my diagnosis
27:43
with my cancer could have been a more severe
27:46
one, right? So I think that, you know, patient
27:49
advocacy is a huge thing that I speak to. And
27:53
I think it's so important for everybody to have
27:56
that comfort and that voice for themselves. Yeah,
28:01
this is a very interesting take because I always
28:03
speak about how important it is to have a gastroenterologist
28:06
who's very proactive, right? Who listens to you,
28:09
who acknowledges your concerns. But you raised
28:12
an interesting point is that sometimes you actually
28:14
have a doctor or GI that is very proactive, but
28:17
it's the patient that is reluctant, right? Or
28:20
sort of like comes back with some resistance.
28:22
So having a very good relationship, I think will
28:25
help break down that fear and that barrier. And
28:28
this is what I advocate for most, you know, find
28:31
yourself a proactive doctor. And if you have
28:33
one, you find one, you're very lucky and listen
28:36
to them in that case. You know, that means they
28:38
really have the best at heart for you. 100 %
28:41
and I feel like too like they will advocate for
28:43
you as well right like because one hard thing
28:48
that I had to deal with between my IBD diagnosis
28:50
and my cancer diagnosis was that after my surgery
28:54
I technically don't have IBD anymore right because
28:59
you know ulcerative colitis affects the large
29:02
colon only right and I wasn't going to be seeing
29:05
her anymore so it was just a very emotional time
29:10
with that as well because she became you know
29:12
such an important part of my life right seeing
29:15
her every six months right sharing you know all
29:19
she saw me all through all my you know journey
29:22
in life right like graduating university getting
29:24
married having children right so it's just they
29:29
become a part of you as well so i just feel like
29:31
that is just so important And really amazing,
29:35
I have to say, and I'm very happy that you got
29:36
to experience this, is to actually be able to
29:38
stick with one GI essentially through your entire
29:41
journey over such a long period of time. That's
29:44
really, really amazing. So stroke of luck. Yeah,
29:49
we used to joke about like, you know, I'd say
29:51
like, oh, it's 20 years, like I've been seeing
29:53
you and she'd be like, oh, well, you're getting
29:55
old, right? So, you know, we always had that
29:57
like banter between us. So, and I feel like that
30:02
also. It helped me to be more open as well. Love
30:06
to hear it. So I want to part with you by looking
30:10
ahead a little bit. And even though this question
30:13
might be very, very hard to answer, I still like
30:16
to get your feel for it. Do you think that we
30:19
will see a cure to IBD in our lifetime? I really
30:23
hope so. I really hope so because there's so
30:26
many different advances in medicine and changes
30:29
and, you know. opportunity of you know studying
30:32
different aspects right and the more people share
30:35
I feel the more opportunity there will be for
30:39
a cure right because there's like I said IBD
30:42
is not a cookie cutter disease so it's hard you
30:44
know to manage every different aspect right that
30:47
people feel so I really do hope that you know
30:50
one day there is a cure because it is such a
30:52
such a terrible disease. Nadia, thank you so,
30:55
so much. I think this was a very inspiring conversation.
30:57
I really love how open you are. And I love what
31:00
you're doing as well with your Instagram, with
31:02
your blog. So make sure everybody who's listening
31:05
to check this out. And thank you so much again
31:07
for being on the show today. Thank you so much
31:10
for having me. That's it for today's episode
31:13
of Talking S***, presented by Colitis Unfiltered.
31:17
I'm Frank Tabering. And if this hit home or hit
31:20
your gut, do us a favor. Subscribe to the show.
31:23
And follow us at Kaleidos Unfiltered on YouTube,
31:26
Substack, Instagram, Threads, TikTok, and Reddit.
31:30
We'll see you soon for more inspiring stories
31:32
from the bathroom floor.