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