Latest / Crohn's & Colitis Unfiltered / Pain, Crohn’s and perspective: Victoria’s seasonal IBD flares

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Pain, Crohn’s and perspective: Victoria’s seasonal IBD flares · Crohn's & Colitis Unfiltered

0:02
My big thing is a lot of people come on here
0:05
and be like, I don't want to be on medication
0:06
the rest of my life, so I'm going to try to change
0:08
my crowns and heal it holistically. And I'm like,
0:11
nobody wants to be on medication the rest of
0:15
their life. Like if I had a choice, I wouldn't
0:16
want to be. But my health long term is much more
0:20
important to me than like risking going off medication
0:25
and potentially having like an obstruction or
0:27
like needing surgery. real things. This is Victoria,
0:31
who got diagnosed with Crohn's disease at age
0:34
24 in Boston, Massachusetts. Victoria is no stranger
0:37
to IBD. Her own brother got diagnosed with Crohn's
0:41
at age 16. Today on the Colitis Unfiltered podcast,
0:45
she shares what life is like with Crohn's, how
0:47
it impacts her body, her passion for fitness,
0:50
and her mental health. My name is Frank Tabering,
0:53
and Victoria, welcome to the show. Thanks for
0:55
having me. So Victoria, every IBD journey starts
0:59
with symptoms. And that's what I'm going to ask
1:02
you about first. How did it all start for you?
1:06
What was the moment where you decided, listen,
1:10
something is definitely wrong. I need to get
1:12
this checked out. And what happened at the beginning?
1:16
Yeah, honestly, I was having symptoms for a few
1:18
years leading up to my diagnosis that I, quite
1:22
frankly, brushed off. I kind of started having...
1:26
changes in like my stool or just really bad,
1:28
like bloating and like cramping. But it would
1:32
always happen around like April, May. And I had
1:35
my yearly PCP appointments during that time.
1:39
And I bring it up to my doctor, like, I don't
1:41
know, my stomach doesn't feel right. And my brother
1:44
also has Crohn's. So she was like, don't love
1:47
to hear that since your brother has Crohn's.
1:49
And she kind of like passingly said like, Well,
1:51
we could do like a stool sample and see what's
1:54
going on, but like never really like pushed for
1:57
it. So I kind of just kept brushing off because
1:59
then my symptoms would kind of go away and come
2:01
back. And it wasn't like a consistent thing.
2:03
In October 2023, I started having like super
2:10
bad pain that like I could not walk. And I thought
2:13
it was my appendix for a little bit. And then
2:16
I ended up getting my... a couple of tests and
2:20
then it showed that I had high inflammation levels
2:22
in my body and then had a CT and colonoscopy
2:25
and kind of confirmed it from there. And you
2:28
mentioned sort of this period of symptoms that
2:31
was a couple of years, right? Was the pain, I
2:35
mean, brushing off one thing is one thing, but
2:37
like, was the pain just never sort of severe
2:41
enough for you to inquire further? Or was it
2:43
just because it kind of went away for a while
2:45
that you thought, I don't know, this is something
2:47
that... comes and then goes and we'll see what
2:50
happens yeah I feel like a little bit of both
2:52
I think like stomach problems are so like glamorized
2:55
over the internet of like oh everyone has stomach
2:57
issues like so I kind of was just like oh like
3:00
I probably just have stomach problems I never
3:02
would have thought I had Crohn's but yeah I was
3:03
never bad enough to the point where I was like
3:05
oh something's wrong until I mean I had pain
3:09
that like I couldn't even walk and I was like
3:11
okay something's obviously not right you said
3:14
your brother has Crohn's as well Is he the only
3:17
one in your family that has Crohn's or potentially
3:21
like, you know, your parents, grandparents, do
3:23
they have any other autoimmune diseases that
3:25
could potentially explain why your brother and
3:29
now you are suffering from autoimmune disease
3:32
as well? Yeah, I know on my dad's side, his aunt
3:35
has Crohn's. She was diagnosed really late in
3:37
life, though. And me and my brother, that was
3:39
another thing. Why I didn't think I had Crohn's
3:41
was my brother's diagnosis was a lot different
3:43
than mine. Like he was having blood in his stool
3:46
and he got diagnosed at like 16. So it was a
3:48
lot different presentation. When you heard that
3:52
you actually had Crohn's disease, obviously at
3:55
that point, you were already familiar with it
3:57
because of your brother, right? And so you were
4:01
not new to the disease. Did it give you... in
4:05
a sense, relief that that was the confirmation
4:08
that that was your diagnosis? Or how did you
4:11
approach that mentally knowing that you had Crohn's
4:14
because you've already seen your brother go through
4:16
it as well? I think I had a little bit of a sigh
4:19
of relief because I feel like I was thinking
4:21
like worst case scenario, I have like three days
4:23
to live. So when I got that, it was a little
4:28
comforting because my brother's managed his Crohn's
4:31
pretty well. But I think the longer I sat with
4:34
it, It made me obviously kind of like sad and
4:37
like realize that like my life will definitely
4:39
like change now that I have this. Of course,
4:43
we always say that we shouldn't compare, you
4:45
know, diseases or conditions in the same family
4:48
of diseases. But again, you know, you know, when
4:51
a sibling has a specific disease and you have
4:53
it, I think you cannot escape to kind of draw
4:55
a certain comparison. How is he feeling today
5:00
compared to you? How are you feeling compared
5:02
to him? I would say we're pretty similar. Like
5:05
we'll have our occasional flares. I would say
5:08
now I feel like our symptoms are pretty similar
5:10
and we're on the same medication. So overall,
5:13
I feel like we're both managed pretty well overall.
5:16
And I'm assuming you're on some form of education.
5:20
Talk to me a little bit about the form of treatments
5:23
that you've been on since your diagnosis and
5:26
are still on today. So when I was diagnosed,
5:28
my GI doctor was like, we should put you on Remicade
5:32
because your brother's on Remicade and it's worked
5:34
so well for him. So usually I guess if one, like
5:38
if a family member is on that medication, it's
5:41
been working for them. It most likely worked
5:42
for me. And I had an almost connecting fistula
5:47
in my bowel loops. And we caught it kind of just
5:51
in time. And he said that the Remicade would
5:53
like completely kind of stop that and kind of
5:55
reverse it. So I started Remicade probably. four
6:00
weeks or six weeks after I was diagnosed, I was
6:03
on prednisone for a minute. And yeah, it's, it's
6:05
been working for me overall. Obviously I have
6:08
side effects from it, but my Crohn's is pretty
6:10
well managed. So side effects before we get those,
6:13
you said, you mentioned you were in prednisone.
6:14
How did you tolerate that? Cause that's the blessing
6:16
and a curse. I talk about it all the time. How
6:18
like, it's like the devil. It's like, it's, it
6:21
has its good and it has its bad, but like I.
6:26
it helped me a lot. Like it calmed. I mean, the
6:28
pain I was in having the Brennazone, it like
6:31
immediately made me feel so much better, but
6:34
definitely like just couldn't sleep. I feel like
6:38
my mood was like super irritable. I'm trying
6:41
to think of the other things. I've been on it
6:42
for time and time again now for like different
6:44
flares or stuff that my GI just kind of told
6:47
me to start taking it if I'm in a pretty bad
6:49
flare, but I definitely don't love taking it,
6:51
but I definitely know it helps. Yeah, exactly.
6:55
Yeah. And especially like you mentioned, you
6:56
know, you, you go on off of, but it's a short
6:58
term anyway, so it might help you through one
7:00
of your flares and then you kind of can ditch
7:01
it again and, and, and the Remicade is, is, is
7:04
working. So that, that's great. So Crohn's and
7:09
colitis are quite different. And, and, and, and
7:12
I mentioned colitis because I have ulcerative
7:13
colitis and I also started with Remicade. I was
7:17
on it for two years and it worked really well.
7:19
It's actually what pulled me into remission,
7:20
but I have the feeling that, you know, once you
7:23
sort of, get into really strong full -on remission
7:26
with colitis, it seems that most symptoms that
7:29
you've had before are kind of calming down. But
7:31
with Crohn's, however, that can be a little bit
7:33
different. So despite the Remicade working, you
7:37
know, how are you feeling today? Like, are you
7:39
still experiencing flares regularly? Have they
7:43
really slowed down? And then when you're flaring,
7:46
what kind of symptoms are showing up for you?
7:50
I would say, like, my flares happened with, like,
7:53
specific times of year. Like I know October is
7:55
pretty bad for me, which was actually the month
7:57
I got diagnosed and like the springtime. So like
8:00
April, May, I usually am not doing too well,
8:03
but I get like my biggest symptom is I get really
8:07
uncomfortable, like bloat, like where I feel
8:10
it's like cramping. Like I also feel like I'm
8:13
so distended, which leads me to just feel like
8:16
I can't even eat because I'm just so like feel
8:18
full and definitely cramping and like. frequency
8:22
would be like my biggest, three biggest symptoms,
8:25
I would say. I occasionally get nausea. It's
8:27
not like a consistent thing for me, but I could
8:29
get that even when I'm not in a flare per se.
8:31
I just get frequently nauseous sometimes. And
8:34
these flares, they last for how long typically,
8:37
or does it sort of just... change randomly? I
8:40
would say I remember like last May. I feel like
8:44
it was the entire month of May. I mean, it wasn't
8:46
like nothing's been ever as bad as when I was
8:48
first diagnosed since I started the Remicade.
8:50
So like, you know, I can still like walk and
8:52
like function overall. But like definitely the
8:57
fatigue hits more and things like that. But they
9:02
can kind of linger. But I wouldn't say like I'm
9:04
in a horrible flare for an entire week. It's
9:06
kind of just like. I'm bloated for weeks on end.
9:10
I'm cramping. I'm having frequency. And it's
9:13
just kind of a never -ending thing. Side effects
9:15
of the Remicade, you mentioned you had some of
9:17
those. Tell me more about that. Yeah, it's kind
9:20
of completely ruined, like, my skin. So, like,
9:22
I have eczema. And I potentially feel like I
9:25
might have psoriasis. Kind of, like, everywhere.
9:27
Like, I've had it on my face, my neck, my legs,
9:30
arms. And obviously, it's kind of hard to treat.
9:36
Like the eczema, it's mostly just like topicals,
9:38
which aren't really great for you either. That's
9:41
definitely been a really big thing of just like
9:44
really sensitive skin. Like my skin gets really
9:46
hot and red and irritated. And I've like never
9:50
had that before. And my GI doctor told me like
9:52
psoriasis and eczema can kind of come from the
9:55
Remicade. But my brother never had that side
9:57
effect. So that's the side effect I have that
9:58
he never really got. And your GI has never proposed
10:02
switching? to a different biologic to potentially
10:05
counter those those side effects my dermatologist
10:08
actually mentioned that that scares me though
10:11
because it's like i don't i don't want to risk
10:13
another drug not working just because i know
10:15
when you go off remicade you can obviously develop
10:19
antibodies and then you might not they might
10:21
not work again so i would want to risk that i'd
10:25
rather suffer with like skin stuff um but yeah
10:28
definitely has crossed my mind But I guess Remicade
10:31
can also just stop working at any time too, which
10:33
I've heard those types of stories though. Yeah,
10:35
I guess if you're okay with those side effects,
10:38
then, I mean, what I would do is probably kind
10:41
of suck it up and then wait until Remicade, you
10:44
know, doesn't work anymore and hopefully it will
10:46
fail. But I think, you know, just seeing it out
10:48
with myself as well, that, you know, there is
10:50
a pretty solid chance that Remicade... might
10:54
lose its effectiveness over longer term versus
10:56
some other biologics. But the good news is that
10:59
there's a lot more treatments out there. I had
11:02
the same fear as you. Honestly, when Remicade
11:04
stopped working, I went into full panic mode
11:06
and I thought, oh my God, how many more are there?
11:08
But I'm on my fourth right now, Antivio, and
11:11
even though I'm on my fourth in about 10 years.
11:14
I think every time I talk to my nurses at my
11:16
fusion center, it's like they give me hope because
11:18
they tell me, oh, hey, there's a new drug that's
11:20
just come out. There's another one that's pending,
11:22
you know, and we might have another one heading
11:24
to market soon. But I totally get that fear.
11:28
So the fear of the biologics not working anymore
11:33
is there. I think so many IBD patients struggle
11:35
with that. You have flares regularly as well,
11:39
but how do you deal with this mentally? You know,
11:45
you have a biologic and it obviously changes
11:49
your body. It has its side effects. But how do
11:52
you deal with that mentally to not just be fully
11:54
sort of healed, right? Like, are you sort of
11:59
constantly thinking about, oh, wow, you know,
12:00
like when is that next flare going to happen?
12:03
Or have you developed some sort of mental blockage
12:06
and you just take them as they come without worrying
12:10
too much, you know, about what's happening in
12:12
the future? I think it's kind of a mix. Like
12:16
I can say, like, I definitely drank a lot more
12:18
before I was diagnosed with Crohn's. And like
12:20
now I just don't see as much of a point in that,
12:23
honestly, because I'm just like, like, if it's
12:25
just going to like cause me to like be in bed
12:27
the whole next day or my stomach hurt, it's just
12:30
not worth it. So there's certain things that
12:32
I'm definitely just changed and like cared more
12:35
about since being diagnosed because I think.
12:38
you know before I could be like oh I'm like young
12:40
and I'm healthy and like I should do that but
12:42
now it's like oh like I'm kind of not healthy
12:45
so it's definitely yeah and the Remicade like
12:48
damages your liver so horribly and like just
12:51
it's kind of like the give and take which is
12:53
tough for me because I feel like it's hard being
12:57
on a medication that's helping your Crohn's but
12:59
is also kind of like hurting your body in other
13:01
ways too which has been one of the hardest parts
13:03
for me personally yeah Well, keyword body there,
13:07
actually, you mentioned it already and it's what
13:10
I want to ask you next. After your diagnosis,
13:13
what sort of lifestyle changes have you made
13:16
physically beyond maybe drinking less? Number
13:21
one is, what kind of lifestyle changes have you
13:25
made? And then second, how do you deal with that
13:29
mentally? This idea, you know, that your body
13:32
is still continuously working against you. I
13:36
would say I'm just a lot more cautious of like
13:38
what I'm putting in my body, like food. I feel
13:41
like I'm definitely more on like my supplements
13:43
and doing all those things. I have like a whole
13:45
little like supplement thing that I feel like
13:47
I'm like 90 years old. And I honestly think I'm
13:49
just better at like kind of listening to my body
13:53
when like I feel like before I used to like push
13:55
myself and like go out if someone wants me to
13:58
come out with them or. You know, things like
14:01
that where I'm definitely much more in tune with
14:03
my body of like, no, like I need to rest tonight
14:05
or like I'm not going to be able to function
14:07
tomorrow. Although that's just because of like
14:09
my fatigue or if I'm in a flare or things like
14:12
that. So definitely my relationships with like
14:15
my friends have changed on like a bad way, but
14:18
just kind of not being able to like do as much
14:20
all the time, especially if I'm not feeling well.
14:23
And in what way are they understanding what you're
14:26
going through? In what way sort of does your
14:29
Crohn's impact that aspect of your social life?
14:32
Yeah, I think my friends are pretty understanding.
14:34
It's like hard because I don't expect them to
14:36
fully understand because I just don't think you
14:37
can without being in it. But I would say I have
14:40
pretty supportive friends. So that's been like
14:43
not an easy part for me mentally, but like they've
14:46
been very receptive and like understanding of
14:47
it. You talk quite a bit about your body, and
14:50
correct me if I'm wrong, but you're pretty much
14:53
into fitness, right? Okay, great. So fitness
14:57
requires energy, and IBD is one of the diseases,
15:03
and you mentioned it, there's often fatigue associated
15:06
with it that sort of sucks the energy out of
15:08
you, right? So as somebody who's very active,
15:12
how is Crohn's impacting your passion for fitness?
15:18
I think that's been one of the toughest things
15:20
because like, for example, I haven't been to
15:21
the gym probably in like a week and a half, two
15:25
weeks, which it's led to a lot of inconsistency
15:27
for me, which frustrates me. I definitely get
15:31
frustrated when I'm not feeling my best and I'm
15:33
just like, I know I can't push myself. And I
15:36
used to push, like I was just saying before I
15:38
was diagnosed, I went, when I like almost couldn't
15:41
walk, I like remember going to the gym that day
15:43
before I was diagnosed and I had to leave because
15:45
I was like. oh like I'm not good so like now
15:48
I'm much more like it still frustrates me a lot
15:51
of not being able to always be like that consistency
15:54
because it just helps my mental health too going
15:56
to the gym um but I'm much better at like resting
15:59
but I would I'd be lying if I had said if it
16:02
didn't like make me frustrated and upset most
16:06
times I can't always be as consistent as I would
16:08
like to be I've talked to some people who actually
16:11
say that even when they're flaring and the pain
16:13
is not too bad, they actually continue with light
16:16
exercising because for them, it for some reason
16:20
helps. Is that the same case for you? Or do you
16:22
sort of just kind of really retract and really
16:26
give your body just plain rest when you're in
16:29
a flare? I'd say it's a little bit of both, depending
16:31
on the flare. When I'm like super bloated and
16:35
like distended and I like I almost get like short
16:37
of breath when I also have asthma. So like when
16:40
I'm working out and I'm just super distended
16:42
and like a little bit of crampy, like I almost
16:44
feel like I can't work out the best of my ability.
16:47
And like I almost feel like winded super quickly.
16:50
And it's like, yeah, I just I need to like take
16:54
the day. But it depends. I would say like with
16:56
fatigue, sometimes I like try to push through
16:58
like my body is feeling OK, but I'm just a little
17:00
tired because usually. working out will give
17:02
me that spark of energy but yeah so I guess it
17:05
kind of depends on the flair and like what's
17:07
going on specifically but yeah so you kind of
17:09
like found the balance based on exactly how you
17:12
feel and then you just complement it with either
17:13
more rest or more you know working out and kind
17:16
of yeah I only know like how important like working
17:20
out is now like now with Crohn's like I want
17:22
to be able to like build muscle and have a strong
17:24
body and like have that too so I kind of look
17:27
at it as like a whole lifestyle and like I want
17:30
myself in like 25 years to be able to still be
17:34
like strong and capable even with Crohn's so
17:36
that's a lifestyle change right there another
17:38
one you know so that's that's good yeah now you
17:41
you were pretty young when you were diagnosed
17:44
but at the same time you know I don't think this
17:46
matters whatever age you are unless maybe you're
17:49
diagnosed as a kid because then lots of times
17:52
you're not able to fully process what is actually
17:54
happening to you but you were 24 and And an IBD
17:58
diagnosis always changes a person 100%. And,
18:02
you know, you don't have to wait 10 years to
18:03
come to a conclusion about what changed for you.
18:06
So your Crohn's, how has it sort of changed you
18:10
as a human being based on who you were before
18:12
your identity? I think I see life as more fragile.
18:18
A lot of people, because I'm like 27, I feel
18:20
like a lot of 27 -year -olds kind of think life
18:23
is. they're just kind of like naive to it and
18:26
think nothing bad can ever happen. And I was
18:27
kind of like that. Like you never think your
18:29
health is going to be in question. And I say
18:31
this all the time. Like when I was in that waiting
18:33
period of like not knowing what was going on
18:36
when I was like in my worst flare before I was
18:38
diagnosed, I like nothing else mattered in my
18:42
entire life. Like I, when your health is in question,
18:44
like it shifts your perspective of like what's
18:47
actually important. So I think now I'm just much
18:49
more. cognizant of like life is a very fragile
18:53
thing and you should be really thankful if you
18:55
have like a body that's like functioning correctly
18:57
and and well and I'm thankful for the Remicade
19:01
even though it's given me like some issues overall
19:03
like it's helped me kind of get my life back
19:06
a little bit and not be in excruciating pain
19:08
every day yeah it's kind of like that give and
19:10
take like I said before of like but you're also
19:12
putting this thing in your body that's not the
19:14
best for you but it's also like healing you in
19:17
a sense like this weird concept What's the relationship
19:21
now with your body and your body image? I think
19:26
when I was first diagnosed, I kind of had the
19:31
perception of like, I feel you have a lot of
19:35
like, why is this happening? Why is my body kind
19:38
of attacking me? It almost feels like you're
19:40
a prisoner in your own body, which I think is
19:42
like a really complicated thing to explain to
19:44
someone who's never experienced it. But then
19:47
I was listening. I don't know if it was, like,
19:49
a podcast. Maybe it was, like, six months ago.
19:50
And the person was talking about how, like, your
19:54
body is not, like, fighting against you. It's
19:56
almost like it was trying to give you these warning
19:57
signs that something wasn't right. And, like,
20:00
so I try to, like, put in a sense of, like, my
20:02
body was trying to, like, tell me something really
20:04
important rather than, like, attacking itself.
20:06
Even though, like, sometimes it can really feel
20:08
like my body just, like, hates me. And I'm like,
20:10
why? And you just, like, think, like, what, like,
20:13
led to me getting. this diagnosis or like, when
20:17
did it kind of start? Or I have so many questions.
20:20
Cause my emo GI was like, even though maybe you're
20:23
having a symptoms for two years, like you could
20:25
have, this could have started brewing like years
20:27
and years prior. Like we just would never know.
20:29
Have you received or found any answers to some
20:32
of those questions? Not really. I like try to
20:35
think back in like my own life. Like when I feel
20:38
like, like I was definitely experiencing, like
20:40
I brought up to my doctor for the first time,
20:42
like two and a half years. before I was diagnosed
20:44
so I know it was like that long which is crazy
20:47
to think your body was like going through all
20:49
that stress and you had like no idea but yeah
20:52
I don't I don't I can't think of like anything
20:54
that would have I don't know it's like so many
20:57
different things cause it right like genetics
20:59
and environmental factors and but it's just yeah
21:02
but my brother having it is super interesting
21:04
because I guess if your sibling has it you're
21:06
50 % more likely to get it so then you cannot
21:10
really pinpoint any sort of specific stressful
21:13
event or something happening in your life? Because
21:16
it's also so interesting to me that you say,
21:17
well, it tends to kind of bother me more in like
21:20
October or in the springtime, right? But you
21:24
kind of find anything associated basically to
21:26
those periods of the year or around the diagnosis
21:29
that something major in your life happened? Nothing
21:32
really? Well, I think with like the times of
21:34
year, I guess my GI doctor told me that like
21:36
changes in season can really affect people with
21:38
autoimmune diseases. That's like one idea. When
21:41
I did get first diagnosed, though, I did just
21:43
graduate grad school. And I was starting like
21:46
my first real like job within my career. So I
21:50
feel like there was stress around that. And I
21:51
had traveled a good amount that month. But that
21:53
was like, those are a couple of big things. Those
21:56
things almost sound like good stress. And, you
21:58
know, because there's good stress and bad stress.
22:00
I always say that I have a lot of good stress
22:02
and I try to keep away the bad stress. But yeah,
22:06
seasons thing, that's interesting actually. I
22:09
guess it just depends on people's bodies being
22:12
more susceptible to seasonal changes. But I hope
22:16
for you that you kind of at one point maybe get
22:17
some of these, find some of these answers and
22:20
have more clarity. You said that your friends
22:23
are pretty supportive of your IBD. I'm pretty
22:27
sure your family is too. So as someone who receives
22:32
such great support, What would you tell people
22:38
who love someone with IBD or who know someone
22:42
with IBD that they're close to who don't really
22:44
know how to support them, right? Or to approach
22:48
them? Because I think like people like us with
22:52
IBD who have great support, we sort of know what
22:56
it's like, right? So what advice would you give
22:59
people on how to support someone? the best way
23:03
possible with IBD I would just say like supporting
23:07
them but also like not be like so super overbearing
23:11
or like always kind of like I think my biggest
23:14
thing is like my friends know I don't always
23:16
need to like talk in depth about it but I can
23:18
just be like hey like I'm not feeling well like
23:19
xyz and they'll you know say if I need anything
23:22
or things like that but like I don't need the
23:24
constant like attention so I would just say like
23:26
give them grace and like support them how you
23:29
know best because I know everyone's different
23:30
maybe some people like more of that like support
23:32
and like the check -ins all the time I know some
23:34
of my friends do that but it's not something
23:36
I necessarily need but I do appreciate it so
23:38
I think just giving them grace and depending
23:40
on like the relationship you have with them just
23:42
seeing if they need anything or even if it's
23:45
like oh you can't come out tonight like would
23:47
you want company or do you want to just be alone
23:49
and just kind of like I know sometimes I just
23:51
rather be alone but yeah You're pretty outspoken
23:54
about your IPT. I mean, we connected through
23:58
TikTok and most of your content is sort of like
24:02
about your IBD journey. How did it come to that?
24:06
Like what triggered you to, you know, not just
24:10
battle your IBD, but to also share your experience
24:15
and talk about it so openly? Yeah, I think it's
24:20
because I also like... waited so long to go to
24:23
the doctor and get diagnosed that I was like
24:25
I'm trying to like advocate for people of like
24:27
if something's not right like go to the doctor
24:30
and I also think there's just like power in sharing
24:33
your story of like something that's like kind
24:35
of debilitated you in a sense of like trying
24:37
to take that power back and making a platform
24:39
off of it and just sharing more awareness about
24:42
it because I don't think it's talked about enough
24:44
and I think like I said like I never thought
24:46
like it would happen to me so most people that
24:50
think that way too. So, which I don't blame them.
24:52
I think just like taking my power back in the
24:55
sense of like, okay, if I'm going to have this
24:56
disease, I might as well like make content about
24:58
it and make other people feel better. And I feel
25:00
like that's like a big thing I've seen on TikTok.
25:02
It's like, I mean, social media can have its
25:04
good and bad, but I think the community on TikTok
25:08
with like IBD is like really supportive. And
25:11
I think it's helped me a lot. And it's almost
25:13
like an outlet for me to just like rant sometimes
25:16
about like frustrations and things like that.
25:19
Well, frustrations, that's another keyword here.
25:22
And I agree with you, the TikTok IBD community
25:25
is really great. But, you know, you do have your
25:27
occasional person with or without IBD who sort
25:30
of throws something out there that's just sort
25:32
of, I don't want to say stupid or dumb, but yeah,
25:36
maybe that's the perfect word to describe it.
25:38
But it's also often connected to sort of misconceptions
25:42
around IBD. As someone who is active on the platform
25:47
yourself, who's probably receiving lots of comments
25:50
and was probably also seeing sometimes opinions
25:53
that are considered potentially, well, you know,
25:55
dumb or ignorant. What are some of the most common
25:58
misconceptions for crones for you that you sort
26:00
of keep seeing? I think people like only think.
26:06
It's like stomach issues where like it's really
26:08
like a whole like it affects your whole body
26:10
in different ways. I also see like a lot of weird
26:13
takes about like people kind of pushing that
26:16
you don't need a medication and you can heal
26:18
your Crohn's or ulcerative colitis holistically,
26:22
which I have a lot of feelings about just because
26:24
I think it's a dangerous message to like promote
26:26
online. Like if that's something you choose to
26:28
do. Yeah. Talk to me about that. Like you say
26:30
you have feelings about it because I see them
26:31
too. And I'm just wondering why. What's the agenda
26:33
behind it? So what's your feeling there? My big
26:36
thing is a lot of people come on here and be
26:38
like, I don't want to be on medication the rest
26:39
of my life. So I'm going to try to change my
26:42
Crohn's and heal it holistically. And I'm like,
26:44
nobody wants to be on medication the rest of
26:48
their life. Like if I had a choice, I wouldn't
26:49
want to be. But my health long term is much more
26:53
important to me than like risking. going off
26:58
medication and potentially having like an obstruction
26:59
or like needing surgery. Like those are real
27:02
things. And it's just not like a disease that's
27:05
just like going to go away. And I think that's
27:07
like a whole other misconception. My brother
27:09
also works in GI. So like, I also know a lot
27:11
about things like that. So I think it's just
27:14
a huge misconception of like, don't need medication
27:19
or you could heal it holistically or just eat
27:23
whole foods and you'll heal it. I'm just like,
27:25
yeah. It's interesting. You just sort of build
27:29
a segue into my next question. But through your
27:32
brother, you said he works in GI. You work as
27:35
a mental health counselor. Is that correct? Okay.
27:38
So as a mental health counselor, in what way
27:43
has your studies or your career so far helped
27:47
you in dealing with your disease from a mental
27:50
point of view? I'm very much like into like the
27:54
whole body connect. is connecting with your brain
27:57
and like mental health impacts physical health
28:00
and physical health impacts mental health, which
28:01
I've definitely seen over the last couple of
28:04
years for me. But I definitely think I'm also
28:08
value going to therapy myself. And just having
28:11
that space to just sometimes rant quite frankly
28:14
about having a chronic illness and how much the
28:18
physical part of me has impacted like my mental
28:21
health. But I definitely, yeah, I just view everything
28:25
like. like a whole, your brain affects your gut
28:28
and things that are like, if you're feeling more
28:30
depressed or anxious, that's directly going to
28:32
correlate to like maybe having a flare or things
28:35
like that. So I definitely see it as a more whole
28:38
body experience. And I feel like it's helped
28:40
me with my work in a sense of like being a therapist
28:44
of like seeing it when my clients are maybe going
28:47
through more like health stuff and seeing how
28:49
it's affecting their mental health. So it's helped
28:53
me see a different point of view as well, kind
28:54
of experiencing it firsthand. Would you agree
28:58
with me or disagree with me that mental health
29:01
comes in a little bit too late when talking about
29:07
IBD? I would say so, yeah. I think it's something
29:09
people don't talk about a lot. When we're really
29:12
sick, it kind of just takes over our identity.
29:15
And if I'm always sick, like, okay, of course
29:19
I'm going to be sad all the time or really down
29:21
or... Or I can't go out. So like, I can't go
29:23
socialize with my friends. So it almost becomes
29:25
like your lifestyle and you're not seeing that
29:27
like, oh, like maybe you're not doing well. And
29:31
if you talk to somebody or your mental health
29:33
is not great. So I think it's like easy to kind
29:36
of make excuses of why you're feeling sad, because
29:38
I feel like there's a lot of reasons to feel
29:41
depressed or sad or anxious when you're having
29:43
a condition like this. And it's kind of just
29:46
normalized. If you could go back now to when
29:51
you were diagnosed with what you've experienced
29:53
since, what would you tell that person on the
30:00
day of her diagnosis? I would say everything's
30:04
going to be okay and you'll figure it out. I
30:06
think at first, there's a lot of things thrown
30:09
at you when you're first diagnosed and you're
30:11
dealing with all this health stuff like I'd never
30:14
experienced ever. So it definitely felt overwhelming.
30:18
And I would just tell her that like, it will
30:20
all work out. And like starting a medication
30:24
is definitely going to like change your life.
30:26
Because at first I was kind of like, what if
30:28
the medication doesn't work? And then what? And
30:30
yeah. And so my final question, that's what I
30:34
always have to throw in here because it's very
30:36
interesting to get different perspectives and
30:37
opinions is, you know, do you think that we will
30:40
see a cure to IBD in our lifetime? Oh, I don't
30:44
know. I don't. I think, but it's possible. I
30:49
feel like my brothers mentioned this to me of
30:50
like, like we were talking about like all the
30:53
new medications and definitely like more research.
30:55
I think the cure will come eventually. I don't
30:57
know in our lifetime, but I would hope so. I
31:00
think it'd be definitely cool to see. And I,
31:03
if anything, I think treatment will evolve a
31:07
lot over the course of my life. Cause like now
31:10
I go for insusions every eight weeks, but like,
31:12
I think, you know. Maybe it will change over
31:14
time of like different. I know there's like an
31:16
injection now for Remicade actually. There is.
31:19
Oh, wow. Okay. It's super new. I think you have
31:22
to do it every two weeks though. An injection.
31:24
But yeah. So I definitely think there'll be different
31:28
treatments and definitely more research and like
31:32
clarity on things. I'm on the same boat as you.
31:35
I do believe that a cure is out there somewhere
31:37
and it may happen, but I am also a little bit
31:41
pessimistic about our lifetime. If anything,
31:43
maybe in our lifetime, there'll be a way to slow
31:47
things down a little bit or to slow the spreading
31:50
of IBD. I think that could be a first positive
31:53
step. But yeah, I think at least sort of our
31:57
generation will kind of have to continue to deal
31:59
with Remicade or other biologics. Victoria, thanks
32:04
so much for talking to me about your disease
32:05
today. That was really great and inspiring. I
32:08
wish you nothing but the best. I hope your Remicade
32:11
will actually continue to work for as long as
32:12
it can. I really hope so. And then also, please
32:16
do give my best to your brother, who's a fellow
32:20
IBD warrior. And for you, wishing you nothing
32:23
but the best moving forward. And hoping that
32:26
those flares will sort of like become more few
32:29
and far in between. Thank you so much. Thanks
32:31
for having me. That's it for today's episode
32:33
of Kaleidos Unfiltered. I'm Frank Tabering. And
32:37
if this hit home or hit your gut, do us a favor.
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Subscribe to the show and follow us at Kaleidos
32:43
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32:50
inspiring stories from the bathroom floor.