Latest / Crohn's & Colitis Unfiltered / From PhD to IBD: Yasmin’s scientific Crohn’s journey

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From PhD to IBD: Yasmin’s scientific Crohn’s journey · Crohn's & Colitis Unfiltered

0:02
I'm interesting in the sense of I'm trying to
0:05
not let it completely define me because you can
0:08
go down rabbit holes about what could happen
0:12
in 10 20 years time you know if you're not careful
0:15
enough and it can be a very scary place to go
0:18
so i think i'm mindful enough to take it seriously
0:22
and to not ignore it because if you ignore it
0:24
then of course then that also has its ramifications
0:27
i did not do anything to cause this ultimately
0:30
in most cases with autoimmune diseases there
0:33
is a very strong genetic element And there's
0:37
genes which we have directly tied to what the
0:41
downstream manifestation would be. But there's
0:44
also, I think, easily over 100 potential genes
0:49
that we've identified, but we don't even know
0:51
what they quite do. But we know that they are
0:53
a risk for IBD. This is Yasmin, who got diagnosed
0:57
with Crohn's at age 31 in Los Angeles, California.
1:01
Yasmin brings a unique perspective to inflammatory
1:04
bowel disease. She's a sharp -minded immunologist
1:07
who sees the autoimmune terrain from both sides
1:10
of the microscope. Today, she's telling us all
1:13
about her Crohn's journey. And together, we'll
1:16
take a deep dive into all things biologics and
1:18
autoimmunity. This is Talking S***, presented
1:21
by Colitis Unfiltered. My name is Frank Tabering,
1:24
and Yasmin, welcome to the show. Thank you for
1:27
having me. So Crohn's disease, that's your diagnosis,
1:31
fairly recent. Let's go back to the beginning.
1:34
Could you talk a little bit about your first
1:37
symptoms and whatever you experienced that prompted
1:41
you to take action and seek a physician to find
1:45
out what's going on? Yeah, so I've always actually
1:49
struggled with some sort of stomach related issue
1:52
all my life. I was always sort of susceptible
1:54
to mainly upper GI. So that will be like a lot
1:58
of nausea, vomiting, anytime I was actually stressed
2:02
out, really. So that's something even as a child,
2:06
I had that going on. And it was just kind of
2:08
like the thing that like my parents and family
2:11
knew about me. But I think what really sparked
2:16
The need to warrant further investigation was
2:19
when I moved to the US. So I relocated to Los
2:22
Angeles and California in just beginning of 2022.
2:26
So I noticed very quickly that my stomach wasn't
2:30
able to like tolerate foods that I typically
2:33
would have been able to tolerate in London. And
2:36
I was just running to the toilet, running to
2:39
the loo, as we like to say as a Brit, running
2:42
to the loo. like constantly like and it was I
2:46
think it was the urgency that was quite a horrible
2:49
situation it was sort of that the moment you
2:52
had to go you have a five minute window to get
2:54
to the loo So that was something that I noticed
2:57
that this is not normal and it was happening
2:59
on a daily basis. That was just as I moved here.
3:04
And I think what was interesting, I noticed,
3:07
and obviously there is data to sort of support
3:09
at this point, but I actually ended up getting
3:12
COVID in August 2022. So yeah, it was, you know,
3:19
I was living here for about seven, eight months
3:21
at this point and it wrecked my GI. Like no other
3:25
symptoms, but my GI. And that's not completely
3:29
uncommon, especially as the more we're understanding
3:32
about how the virus works. And I really did not
3:35
recover from that point. And so everything just
3:38
sort of got more exacerbated. And to be honest,
3:41
I actually knew I had just with my background
3:44
and my sort of field of expertise, I knew I had
3:47
Crohn's. I knew I just needed the confirmation
3:50
really to be able to proceed medically. So you
3:54
just mentioned, you know, when you were when
3:56
you were suffering from COVID, your GI was wrecked.
3:59
And this podcast is called Talking Shit for a
4:02
Reason. What specifically are we talking about?
4:05
Diarrhea constantly, cramps, blood? Like, how
4:08
did that manifest? Yeah, so for me, it was, I
4:11
mean, diarrhea, but also vomiting. Like it was
4:15
just out of nowhere. It was brutal on both ends,
4:19
almost like I had like norovirus or something.
4:23
And it was constant to the point I was like,
4:26
oh, my goodness, like I'm going to, I need to
4:28
get some desperate electrolytes in me. So I dropped
4:31
nearly a stone in that time of having COVID.
4:35
Stone is, how do we say this? It's like 15 pounds,
4:37
I think, so 7 kg, right? I was going to ask you
4:40
to clarify. Thank you. So any of the Americans,
4:43
sorry, European, I think it's 15, 7 kg, right?
4:46
So it's, which is a lot, a lot of weight. And
4:50
yes, very loose. But then what actually prompted
4:54
me to get the investigation was that was in August
4:57
2022. And then I continued suffering per se for
5:01
another year of just loose diarrhea constantly.
5:05
It was. Very difficult. I was navigating a brand
5:09
new relationship. And let me tell you, that is
5:12
trying to run around in secret. When you're trying
5:18
to impress someone is not ideal at all. But we
5:22
worked through that. And but then it was the
5:25
night before my 31st birthday party. I actually
5:28
ended up in the ER because I was passing blood.
5:30
And there was no obvious symptoms. But I wasn't
5:32
like pushing. You know, it wasn't like from straining.
5:36
It was just. just dropping in the bowl and thought,
5:39
this isn't good. So we ended up in the ER and
5:41
they said, yeah, you need to follow up with a
5:42
GI. As I said, by that point, I knew, to be honest.
5:47
Medically, you knew about Crohn's disease. You
5:50
knew what it was. Most people when they're diagnosed
5:53
with IBD are not familiar with either Crohn's
5:56
or colitis. So while it was not a surprise to
6:00
you medically, you're still human. So I'd like
6:03
to know what went through your mind. Mentally,
6:07
emotionally, when you heard the words officially,
6:11
you have Crohn's disease. Yeah. So, I mean, my
6:14
GI did not like wait at all. I was like still
6:17
coming out of my sedation when he told me. And
6:20
I was like, oh, it's like a kind of different
6:21
planet. So I don't think I fully processed it.
6:24
But I'm actually very ashamed to say the very
6:29
first response was relief that I had validation
6:33
for making a fuss of my symptoms. and it very
6:37
quickly switched to okay wait no let's think
6:40
about that further because you know you never
6:43
want to be seen as being an unnecessary drama
6:46
queen and needing extra accommodations like it
6:49
was always so embarrassing to have to list off
6:52
dietary restrictions or just things that were
6:55
I noticed were triggering me but maybe not but
6:58
maybe and you know having to as I say have constant
7:03
access to the bathroom It was nice. Like for
7:07
the first 30 seconds, the knee jerk reaction
7:10
is relief that, oh, there's actually a valid
7:13
reason. Like I'm not just making a fuss out of
7:15
nowhere. But then, of course, it went into, oh,
7:20
okay, right. There's something going on. And,
7:23
you know, my life might not look the same moving
7:25
forward from this point on. Absolutely. And we're
7:28
going to talk about this change in life in a
7:31
few minutes. Before we get there. I want to just
7:34
talk a little bit about what treatments you are
7:36
currently undergoing and what is your experience
7:40
with these medications? I actually wasn't on
7:44
treatment for the first year. We were just trying
7:47
to just kind of see how it was going to go. But
7:50
I was put on budesonide. So, I mean, that counts
7:53
as a treatment. Budesonide is a steroid. And
7:57
I was sort of. blasts your immune system essentially
8:01
it's like a quick sort of let's try and calm
8:04
this flare down it like is a we call it like
8:08
a almost like a pan immunosuppressant it just
8:10
like in general just like stops the immune system
8:14
from freaking out but I will say the one I had
8:16
was more like classified as like guts almost
8:19
gut specific budesonide and it was It was really
8:25
intense on me. Very, very intense. It actually,
8:30
for my case, did not make it better. It seemed
8:34
to have made everything much worse. And perhaps
8:37
this isn't completely surprising. I don't want
8:40
anyone that's listening to like get freaked out
8:43
if they are offered budassinide. Because, you
8:45
know, it is part of the standard care. Like it
8:48
does work. I think for my situation. there's
8:52
a lot going on with the immune system that all
8:54
you know if you try and suppress it sometimes
8:56
it comes back in full force to do the opposite
8:58
you know and when when you're when you're twiddling
9:00
with immunosuppressants you know sometimes it
9:02
doesn't follow completely the predictable trend
9:05
I mean it was better than not doing anything
9:07
at all though so I was put on budesonide did
9:11
not help the situation at all I did change up
9:14
my diet drastically as well I was just a lot
9:16
more I wasn't doing anything bad before but I
9:18
think I was just a lot more accountable you know
9:20
to like maybe not having extra extra glass of
9:24
wine on the weekend or extra you know cocktail
9:27
or two or not having pizza or something I was
9:31
being a lot more accountable but ultimately we
9:34
knew that I had to start something to really
9:37
keep everything under control, just from a quality
9:39
of life, but also the risk of potential serious
9:43
consequences later on down the line. So I started
9:47
a biologic. It's a relatively newer. I would
9:50
say, class of biologics. It's called Entivio.
9:53
That's the name that I'm on. It's the type of,
9:56
for those immunology nerds out there, it's a
9:59
type of anti -integrin agent. It's called vedolizumab.
10:03
So people might know it from its antibody name.
10:06
But I've been on it since March of this year.
10:10
And it has definitely been a game changer. Absolute
10:13
game changer. No regrets. Only regret is I didn't
10:16
start sooner, to be honest. You've been on that
10:19
since March this year, you said. How are you
10:22
feeling today? What is life like currently? Oh,
10:26
gosh. I mean, I got my quality of life back.
10:29
I'm not running to the toilet every second of
10:32
the day or having to have access to a toilet
10:35
nearby. And also, real talk, I want a nice bathroom.
10:41
okay if you know I'm gonna put my bum on that
10:44
seat five times a day I don't want like a gas
10:47
station bathroom it's just it's too anxiety driving
10:51
so I would be obviously me and my now husband
10:54
at the time my partner we're just like is there
10:57
a nice hotel nearby I just need a hotel that's
10:59
nearby so I could use their lobby restroom it's
11:03
so nice to not have to worry about that anymore
11:05
it's nice to be able to go for a nice meal and
11:07
not have to scout the menu hours before and properly
11:11
interrogate every single meal and to make sure
11:14
that I can have this this this this or if we're
11:16
going to friends houses and they're hosting us
11:19
not having to be that guest that's you know listing
11:22
off a bunch of dietary restrictions when they're
11:24
just ultimately being polite and they just don't
11:26
want to kill you you know with like a severe
11:29
nut allergy so I think it's better to have my
11:32
life back in that sense so I am tolerant of it
11:35
seems like pretty much every food that was aggravating
11:39
for me before you know don't have that urgency
11:42
anymore no more diarrhea the stools are formed
11:45
which is nice that was new for me as well um
11:50
fantastic yes exactly so but then i will say
11:54
we haven't gone in with any of like the biomarkers
11:57
yet we've not done any of like the testing just
11:59
to make sure that um it's working so i mean it
12:03
i know symptomatically it is but i think my next
12:07
visit we're gonna go and we're gonna do some
12:10
tests just to confirm that everything is working
12:12
yeah you mentioned that you've done some changes
12:17
to your lifestyle in relation to paying attention
12:21
more to diet but how else has Crohn's impacted
12:26
you in terms of in terms of how you navigate
12:32
life. Any other lifestyle changes that you found
12:34
useful that worked for you in dealing with Crohn's?
12:38
So this might be another controversial one to
12:42
some people that are in the tribe, I would say,
12:45
but I was like a big CrossFitter, so I loved
12:48
CrossFit. And, you know, that was my jam. I got
12:52
into it like in 2019, I think 2018. And once
12:57
you're in the tribe, you're in the tribe. I'm
12:59
not going to call it cult because, you know,
13:01
we'll get yelled at. I'll get yelled at. But
13:02
once you're in the tribe, you're in the tribe.
13:04
And I loved it. I love the weightlifting aspect.
13:06
I love the high intensity. But what I found interesting
13:10
was as my symptoms progressed, I noticed very
13:16
visibly I was not able to keep up with the workouts.
13:20
I was not able to recover. My mates were able
13:24
to do it every day, at least three days in a
13:27
row, one day off, four days in a row, one day
13:29
off. At one point when I was in the UK, I was
13:32
able to do that. When I started doing CrossFit
13:35
out here, I did one workout and I was fried for
13:39
like two, three days. And I noticed like, yeah,
13:43
I was not able to recover. I was not able to
13:45
keep up. And it didn't make sense because I was
13:48
obviously pushing more away. I was obviously
13:50
getting, I was improving some of like my stats.
13:53
But then I realized, wait, I mean, there's a
13:56
whole other conversation we can have about this
13:59
because there's actual definite like links with
14:01
the immune system. And if you go too hard exercise
14:03
wise and the potential effects, but. So I ended
14:07
up completely stripping back. So I haven't picked
14:10
up a barbell in a long time. I am now a Pilates
14:13
girl, very Los Angeles. I go to my Pilates with
14:16
my Stanley Cup. And I mean, it's actually been
14:19
very beneficial for me to step back like that.
14:21
So having to strip back those workouts, I would
14:24
say. Hmm. I'm no longer in LA, but I still, I
14:27
got my Stanley cup right here and it's sort of
14:30
like a lifesaver in terms of, well, there you
14:32
go. You got the pink one. Is that the one that
14:34
I saw? No, it's the white one. Oh, I like, yeah,
14:38
exactly. That's a good one. You mentioned something,
14:41
you mentioned something that, that, that sparked
14:42
my sort of curiosity. You said, you know, if
14:44
you go too hard with exercising, that sort of
14:47
could have a negative impact. Could you elaborate
14:49
on this a little bit? Cause I'm. You know, a
14:51
lot of people, they just like exercise, exercise,
14:53
exercise, exercise all the time, you know, push
14:54
your body. But what's the deal here? There's
14:58
a lot of immunology. I mean, there's a lot of
15:00
hardcore immunology in this, but sort of like
15:03
kind of like Goldilocks theory in that sense
15:07
of like too little and too far. You know, you
15:09
need to find that balance of just right. And
15:12
there is, okay, so I'm going to say. exercise
15:15
is just wonders for the body make like it's anti
15:20
-cancer we can also classify it you know exercise
15:24
is being explored alongside standard of care
15:27
for cancer patients to be able to boost their
15:29
immune systems to fight cancer you know that's
15:31
like in the cancer field And even in general
15:35
for immunoregulation, which is this whole topic
15:38
of autoimmunity, is something's gone wrong with
15:41
regulating the immune system or immunoregulation.
15:44
In general, exercise does wonders for our actual
15:48
muscles and our tissues and boosting the anti
15:51
-inflammatory cells versus the cells that cause
15:56
inflammation, the pro -inflammatory cells. with
16:00
all that but you know you can go too far and
16:03
swing the other way and it is a balance right
16:06
if you are wrecking your body every single day
16:09
and building up those stress levels in your body
16:12
as well your immune system is driven by stress
16:15
you know your immune cells have hormone receptors
16:17
you know and that's good but it's also bad in
16:19
terms of how they move around your body and if
16:22
you're not giving your body adequate time to
16:24
recover Now, obviously, that doesn't just have
16:27
ramifications on your actual like tissues, but
16:30
also on your immune system as well. So that's
16:33
kind of keeping it very high level. But that's
16:36
why it's very important to listen to your body
16:39
and to not get caught up in the hype, especially
16:42
I found you know, at least for me with CrossFit,
16:45
if I didn't keep up with my classmates, I would
16:47
get like stressed out. And I think like class
16:49
environments can, I think class environments
16:51
are great, by the way. It motivates me, but that's
16:54
something you can definitely tell, like you feel
16:56
the pressure if you don't, especially if it's
16:58
like a time cap and you don't finish the workout
17:00
in the time you're last in the class to finish.
17:03
And it might make you want to go harder, but
17:06
then you're thinking, hang on, how does that?
17:08
What's the impact on my body? You know, it's
17:11
not just not being hard enough or badass enough,
17:14
you know. Okay, let's close that parenthesis
17:17
and we're going to come back to all this autoimmune
17:18
immunology stuff very, very shortly. But yes,
17:22
you got diagnosed recently, but that does not
17:25
mean that you haven't had your experiences with
17:27
this disease. So between your diagnosis and today,
17:31
how do you feel that Crohn's disease has changed
17:34
you as a person in general? So I'm interesting
17:38
in the sense of I'm trying to not let it completely
17:41
define me because you can go down rabbit holes
17:46
about what could happen in 10, 20 years time,
17:49
you know, if you're not careful enough and it
17:51
can be a very scary place to go. So I think I'm
17:55
mindful enough to take it seriously and to not
17:58
ignore it because if you ignore it, then of course,
18:00
then that also has its ramifications, but also
18:03
to not get completely sucked into like. over
18:06
analyzing every single symptom if i have an off
18:08
day or if i have a meal that's throwing me off
18:11
slightly like i did have food poisoning like
18:14
two months ago and i thought my life was over
18:16
i was like this is it this is how it ends um
18:19
which is an experience but i think it has definitely
18:25
one massive benefit is it's allowed me to be
18:29
kinder to myself um especially when it comes
18:33
to fitness like gym related aspects and just
18:36
thinking oh do I'm not am I not resilient enough
18:40
I'm not in the 5 a .m club you know I'm not surviving
18:44
on four hours sleep no sleep is necessary for
18:47
your immune system like you know which is the
18:50
priority at this point you know I think it's
18:53
being kinder to myself and also listening to
18:55
my body not getting sucked up by the hustle culture
18:58
around me um because they're not suffering from
19:02
my symptoms. And even if they are, then, you
19:04
know, they're doing a good job of keeping it
19:06
quiet. So I think that's been the biggest, I
19:09
think it's been me being kinder to myself, but
19:11
also knowing, and that's a big lesson for everybody,
19:14
I did not do anything to cause this. Ultimately,
19:16
in most cases with autoimmune diseases, there
19:19
is a very strong genetic element to it. And there's
19:24
like genes which we have directly tied to what
19:27
the downstream. manifestation would be. But there's
19:30
also, I think, easily over 100 potential genes
19:35
that we've identified, but we don't even know
19:37
what they quite do. But we know that they are
19:40
a risk for IBD. So I think it's also being kind
19:43
to myself and knowing that I didn't cause this.
19:46
This isn't my fault. And just being at peace
19:49
with that, really. I was actually going to touch
19:52
on that subject. And I got to make sure I don't
19:54
forget about all the other questions I want to
19:56
ask as a follow up here. But Sometimes I have
19:59
people who literally told me in the past, you're
20:04
an anxious person. You have this situation that's
20:06
stressful for you. You have those family issues
20:09
over there. This is what causes your autoimmune
20:11
disease. What do you respond to such a statement?
20:16
So it is difficult because there are definitely
20:20
interesting links for sure between sort of as
20:25
I say stress and the immune system and even like
20:28
that gut barrier and it's like quote -unquote
20:32
leakiness I don't like that phrase because it
20:34
gets tooted around so much now but everybody
20:36
thinks they got that leaky gut but you know really
20:38
that you know leaky gut comes from like IBD essentially
20:42
you know that barrier that integrity it becomes
20:45
a lot more you know leaky per se so I definitely
20:50
think that there is definitely some science to
20:53
it. And we do know that the neuro -immuno -endo
20:58
axis, so like the brain, the immune system, and
21:01
the hormones, everything is linked. And, you
21:04
know, I mean, I could go on for this for days,
21:07
but when you're thinking about... your diagnosis
21:10
or your like disease you have to think about
21:13
it holistically like don't just be like oh I
21:16
had I there's one incident maybe one incident
21:18
could have been the final trigger but you know
21:21
your body is you know your your entire being
21:25
is not just going to be responsive to like one
21:28
specific trigger it's as I say it's your It's
21:31
your cardiovascular system. It's your nervous
21:33
system. It's your hormone system. It's your immune
21:35
system. You've got all these different elements.
21:37
So with that, you know that, of course, stress
21:39
does also feed to your gut. And, you know, it
21:44
does mobilize the immune cells as well in the
21:46
gut. And there's really interesting, like, studies
21:49
coming out about even depression and its links
21:52
to the gut. And, again, that's not surprising
21:56
at all. linked in this way or synced i should
22:03
say but i think to go as so far as to extrapolate
22:08
and say that is why you have crohn's disease
22:12
or ulcerative colitis because you had a breakdown
22:15
over that breakup that you had let's not go that
22:19
far do you know what i mean absolutely absolutely
22:24
linked but you know there's a strong genetic
22:26
part that is in play here as well and i don't
22:29
want to say we use genetics as an excuse but
22:32
yeah this is something where most of the time
22:35
it's not like you said it's not our fault right
22:37
like we are given the genes that we're given
22:39
you know we cannot pick and choose so that's
22:41
that balance yeah yeah very interesting now in
22:46
your previous response you talked about fear
22:49
You talked about, you know, fear down the road,
22:51
you know, is this disease coming back with a
22:53
vengeance? Am I going to flare up potentially?
22:56
And I got to say, I'm the first one who's guilty
22:57
with this. I mean, just about two months ago,
22:59
I had a calprotectin. It was 150 or so. It was
23:03
the first time that it was, well, slightly elevated
23:07
in years because I've had the chance to be in
23:09
remission for the better part of 10 years. And
23:12
so, of course, I'm like, you know, messaging
23:13
my doctor, hey, should we do a colonoscopy? Should
23:16
we do more testing? She says, I'm not really
23:19
worried. We were supposed to do colonoscopy next
23:22
year anyway, but hey, if it calms you down, sure,
23:24
why don't we just do it now? It doesn't really
23:25
matter. So what is your message to people, well,
23:30
like me and others, that might have a little
23:33
bit of an elevated fear, especially if also they're
23:35
in remission, about this next symptom or anything
23:40
that could potentially remind oneself to flare,
23:44
but that might not actually be what's happening?
23:49
Hmm. It's interesting you say this because I've
23:52
kind of been in a similar situation. So I'm trying
23:56
to think about how I would advise myself. One
23:59
time my calprotectin was over 1400. And there's
24:05
a whole crazy story about that as well, which
24:08
I really want to be careful because I don't want
24:10
to spread misinformation either. But it ties
24:13
into my story. I actually had, that's why I switched
24:15
to a Stanley Cup. I had another water bottle.
24:19
I'm not going to say the name because I'm not
24:21
the brand because I'm not going to be, I don't
24:23
want to be dealing with that. But I didn't, I
24:26
mean, I was gross and I clearly didn't clean
24:28
it properly. And within the rubber, it had a
24:31
rubber ring, you know, the rubber ring inside.
24:33
And we, well, we took it like out where there
24:36
was like clearly mold in it, you know. And we
24:40
actually, with me being at... did the job that
24:43
I have we have a microbiology lab like the head
24:46
of microbiology sat in the office next to mine
24:49
so I just went over and I was like hey can we
24:51
just plate this and can we culture it And I mean,
24:54
anything grows when you put it on like an agar
24:56
plate. But this was like noticeable in the conditions.
25:00
Immediately, there was some sort of growth and
25:03
we didn't send it off for IDing. But anyways,
25:05
so I'm not going to like get people to freak
25:07
out over mold because there's so much misinformation
25:09
about mold and mold testing and all of that.
25:12
But when I switched water bottles, my Calprotectin
25:16
aggressively dropped from 1430 down to like...
25:20
around less than a hundred it was it was a crazy
25:23
situation but anyways so also like yeah you just
25:26
don't know i mean situations like that can like
25:29
trigger but i'm going to be careful because calprotectin
25:31
is also very much a biomarker for ibd um i think
25:36
so i'm you know i'm as i say i'm not a clinician
25:41
so clinicians might argue with me on this i just
25:44
know from my experience, like that one, and even
25:46
just knowing about blood work, it really is just
25:49
a snapshot in the moment of time, right? It's
25:52
the snapshot of what happened, you know, the
25:56
day before, you know, or the day before that.
25:59
So that's why I think while there are some biomarkers
26:04
that you definitely need to act on immediately.
26:07
There are others where you have to look, as I
26:09
say, look at the whole picture. You've got to
26:11
look holistically. How is everything else? How
26:13
are you behaving symptomatically? How are your
26:17
stools at the moment? Are you passing blood?
26:19
How are your other biomarkers? How's even your
26:23
general inflammatory markers in your body? So
26:26
I would say when you freak out, look at the whole
26:32
picture. I will also... caveat when I say that
26:35
because I know symptoms doesn't always paint
26:37
the full picture you have some cases of course
26:40
where people are asymptomatic and then don't
26:44
even know and they have Crohn's or you know obstructive
26:47
colitis which is just crazy as well that's also
26:49
very scary yeah so I don't know what my advice
26:53
would be don't over freak out and partner with
26:56
a good GI physician properly Absolutely, absolutely.
27:00
And that's what kept me in check as well, to
27:02
have someone that tells me in her reply, I am
27:06
not worried. Yes. Interestingly enough, our relationship
27:09
is so strong that I worried less, you know, I
27:13
was able to calm down. I got to be honest with
27:15
you, scheduling a colonoscopy also gave me the
27:17
peace of mind, you know, it's coming up in a
27:19
couple of weeks, but still, you know, reading
27:21
that and this coming from somebody who's really...
27:25
proactive, who really knows their stuff in this
27:28
field, it does provide some sense of relief for
27:32
sure. You kind of spoiled it already where let's
27:36
say for anybody listening, it's no longer a secret
27:39
that you're not just anyone who's interested
27:43
in science, IBD, you are actually a scientist
27:46
and you are very well -versed in immunology.
27:51
So I would love to talk a little bit about this.
27:54
Because for so many IBD patients, Crohn's or
27:58
colitis, this top tier of medications, the biologics,
28:02
is sort of like lifeline drugs, right? Like this
28:05
is what keeps them in remission. Lots of us stick
28:09
with one treatment for a long time. Others, even
28:12
like myself, we sort of develop antibodies and
28:15
then we have to switch to the next biologic.
28:17
There's a lot of information out there. There's
28:19
a lot of misconceptions out there. Yeah. But
28:22
going back to the basics, especially for those
28:26
who have been recently diagnosed or who know
28:29
people, care for people who are diagnosed recently,
28:31
could you very quickly take us through an easy
28:35
enough to understand to the average human being
28:38
definition of a biologic, especially in context
28:41
also of IBD? Yes. So I think with the IBD specific
28:46
drugs, when I think of the biologics, I think
28:50
of those like immunomodulators, we obviously
28:53
call them those that change up the immune system.
28:57
That's exactly what it stands for. I guess it's
29:01
not really change up, just sort of like, you
29:03
know, tips the balance. let's say. So the classic
29:07
biologics, I mean, you've mentioned, you know,
29:10
Ramecage, that's a perfect example. That's an
29:14
anti -TNF agent. So a lot of options for like
29:18
the newer class for IBD patients, I mean, not
29:21
even newer class, some of these have been around
29:22
for like 20 years or so, is they target cytokines.
29:27
So what a cytokine is, is it's basically how
29:31
your immune cells communicate to each other like
29:34
the signals that they use if the language they
29:36
use is cytokines and that can even be like non
29:40
-immune cells speaking directly to immune cells
29:43
like for example like your gut barrier speaking
29:47
to your immune cells so cytokines is the language
29:50
that they use but they also it's not even just
29:54
the language in the sense of just like telling
29:57
this cell to go over here, it also is telling
30:00
the cell to become this or do this role. Now,
30:05
when you think about the ones for IBD, like anti
30:10
-TNF, so infliximab, or like Ramecade, or anti
30:15
-IL -12, which is like Stelara, and Sky Rezy
30:21
is anti -IL -23, for example, that, like, blocks
30:24
the IL -23 cytokine. So the cytokines can be,
30:28
like, either have, like, the... TNF names, or
30:31
the ILs. So that sounds for interleukin, like
30:34
IL -12, IL -23. So those are all different cytokines
30:40
or signals that bring about different responses.
30:42
Depending on what cell releases, what cell catches
30:46
it, I mean, specific cells respond to specific
30:49
cytokines, that is going to cause the response.
30:53
Now, IL -12, IL -23, TNF. in this case, TNF alpha
30:58
mainly, there's also TNF beta. Anyways, they're
31:01
all very important in your immune system because
31:03
if you have infection, they all kick in and they
31:07
obviously cause, they mold the immune system
31:09
to be able to fight the infection or, you know,
31:13
or like tell other T cells to turn into this
31:17
type of T cell or to become this kind of like
31:20
more differentiated, specialized immune cell
31:23
to go clear this infection. That's great. But
31:26
when you have IBD and other specific autoimmune
31:31
diseases, which obviously this is tied to, it
31:34
also can be the wrong kind. It can be inflammation
31:37
against you. So not just against clearing infections,
31:41
but also unfortunately fighting your own body.
31:44
So we need to tamper that. We need to calm that
31:48
down. So that is obviously when these biologics
31:52
come in. Obviously, as you said, you were, I
31:55
think, Khan, you said like an anti -TNF agent.
31:58
Yeah, Remicade and then later Humira, Symfony.
32:01
Yes, exactly. So obviously that was doing that
32:06
response that was basically calming down the
32:09
TNF. Now, obviously, the next question that we
32:14
get typically is, oh, but that sounds like very
32:16
important for your immune system. Are you going
32:19
to be at risk by stopping? that particular cytokine
32:24
or that signal now this was always a big fear
32:28
like amongst the scientific community and I mean
32:30
it's an understandable fear because yes I mean
32:33
you know think about it like on paper that's
32:35
how all that works but there is now tons of data
32:38
and studies to support like the long -term safety
32:42
of these agents especially with like the newer
32:45
class coming out already like the IL -12s the
32:49
IL -23s and just how like how like you know your
32:54
safety long term down the line versus of course
32:57
you hear like immunocompromised like oh my immune
33:00
system's compromised but also those are just
33:02
one or two or three cytokines out of you have
33:05
so many different arms of your immune system
33:08
at work that you know if you knock out or like
33:12
not even knock out it's not the right term sorry
33:13
but if you quiet or silence this particular signal
33:17
your rest of your immune system can still do
33:20
its thing you know people are on like b -cell
33:23
depleters like you know rituximab like proper
33:26
like really going after all their b -cells or
33:30
like most of their b -cells and they're still
33:33
mostly fine now i want to also be careful when
33:36
i say that obviously there are always caveats
33:38
because of course yes you are immunocompromised
33:40
please take safety precautions you know be safe
33:44
if something's going around don't make dumb decisions
33:47
that are going to put your health at risk but
33:49
the biggest I want people to take away is that
33:53
any potential risk of being immunocompromised
33:57
or silencing this part of your immune system
33:59
does not come close to letting an autoimmune
34:03
disease run rampant in your body. That risk is
34:06
far greater. And that's really a strong statement.
34:11
And I think everybody should think about that.
34:16
response do you have to people potentially even
34:19
certain doctors who would tell you that being
34:24
on biologics especially for decades on end is
34:29
hurting the body is hurting your health long
34:32
term sometimes they don't even mean this in a
34:37
in a bad way i had my own partner asked asked
34:40
me sometimes hey but Is it OK for your body to
34:43
be on these biologics for the rest of your life?
34:47
Right. What's your response here? So as they
34:50
say, we are accruing data as time goes on, looking
34:54
at long term studies. Now, we don't have a hundred
34:56
year old study, you know, to look at. Someone
34:59
has been on it for a hundred years, you know,
35:01
but we have data definitely to support longitudinally
35:04
that it's safe. And again, but my big my big
35:08
question I would ask those people is. What's
35:10
the bigger risk of not being on it? You know,
35:14
the immune system is directly, I mean, the immune
35:17
system's good, right? It keeps you alive every
35:20
day and you're exposed to, you know, so many
35:23
potential pathogenic agents every single day,
35:27
but it keeps you alive. So it's powerful. What
35:31
happens when it directs that powerful response
35:33
against your own organs? What happens if you
35:36
just let that do it, do what it wants? unrestricted
35:40
uncontrolled that risk is far greater and you
35:45
know every potential medical intervention every
35:49
every yeah every medical intervention or treatment
35:53
regimen carries some sort of risk always even
35:56
take i mean for goodness sake i'm not going to
35:58
make it about this but even taking tylenol or
36:00
paracetamol let's not yeah yeah but Just to be
36:05
clear, it doesn't cause autism, but get that
36:08
out there. But even just taking that, you know,
36:09
like anything carries a risk, but what is the
36:12
risk of not taking that intervention? You know?
36:17
Yeah. So that's what I would always post. Absolutely.
36:21
Even biologists have come a long way. I remember
36:23
back in 2013, and again, that's really not that
36:26
long ago, but one of my fears, especially the
36:28
first five to six, seven years when I would develop
36:31
antibodies against the treatment, I have to switch
36:34
to the next one. One of my fears was, what if
36:36
I run out of options? Now, fast forward to 2025,
36:41
I sometimes even talk to the nurses at my infusion
36:44
center and they're telling me, oh my God, we
36:46
have a new biologic hitting the market, basically,
36:51
once a year maybe even more how do you evaluate
36:55
sort of the current biologics biologics market
36:58
and what will your message be to the people that
37:01
are afraid of just burning through treatments
37:05
and then ending up at a point where well i used
37:08
all of them now what yeah um exactly what you
37:14
said and the pace that science is being revolutionized
37:20
right now we are moving at such a fast pace so
37:24
I mean for example my career I'm in the cell
37:27
and gene therapy space and cell therapy and gene
37:30
therapy is just exploding right now and in general
37:34
this whole biologics they are all like classified
37:37
as we can classify as immunotherapy i mean people
37:41
have different thoughts but in general i would
37:43
classify them as a type of immunotherapy they
37:46
are you know somehow modulating your immune system
37:48
or using your immune system to start to either
37:51
treat you in the sense of in a good sense like
37:54
cancer or in the sense of calming it down and
37:56
that field has been exploding the last 20 years.
38:00
I just especially when we think about, you know,
38:04
I would say the key game changing drugs is something
38:08
called Keytruda for cancer, CAR T cell therapy
38:12
for cancer as well, like for the leukemias. But
38:15
then for the autoimmune space, it's rituximab.
38:18
It's the B cell depleting agent, which has been
38:22
a complete game changer for those with like severe
38:24
autoimmune diseases like, you know. i'm not to
38:27
say that what we have isn't severe but like lupus
38:30
for example you know or um even ms they'll be
38:34
on like something like a crevice for example
38:36
but in general the b -cell depleters really are
38:38
game changers for those that maybe were at higher
38:42
risk of exhausting options in the sense of like
38:46
you know the prognosis isn't good so the field
38:51
is constantly evolving we've not even got to
38:53
like self -therapy and that potential yet for
38:56
autoimmunity so my background actually what I
39:01
did for my PhD was looking at using your immune
39:04
cells to basically stop an organ transplant from
39:08
being rejected but that same principle could
39:11
be applied to autoimmunity so we have these quick
39:15
little you know jumping over to immunology but
39:18
we have these immune cells in our body called
39:21
t -regs or regulatory t -cells their job is to
39:25
suppress the immune system once you've cleaned
39:28
cleared up an infection they kick into gear and
39:30
they're just like okay right let's switch you
39:33
off now you've done your job but in most cases
39:38
of autoimmunity pretty much every case of autoimmunity
39:41
they've also found that the t -regs they're not
39:43
quite doing their job properly because t -rex
39:46
are also meant to stop autoimmunity they go around
39:49
and control any potential auto reactive cell
39:52
they'll be like no we'll switch you off don't
39:54
do that don't attack ourself you know we're safe
39:58
don't need to do that so what if we could harness
40:01
their power to be able to stop autoimmune diseases
40:05
i mean that's the way that that's how they're
40:07
supposed to function right something has clearly
40:09
gone wrong that they can't do that why so that's
40:13
even like there's so much right now in clinical
40:16
trials exploring the power of these cells t -rex
40:20
and what if we could put that into patients so
40:24
what i would say to people is who are worried
40:28
is that don't because this field is i can't even
40:32
keep up with the literature coming out every
40:34
single day in my field that's why i try and be
40:37
like you know the boff on all things immunology
40:40
i I can't even keep up with it. I can't even
40:43
keep up with my field right now. So stay encouraged
40:47
because good science is coming out every single
40:49
day. Exactly. I think that's a good way to sum
40:52
it up. Even if you are burning through some treatments,
40:56
as long as, you know, your colon, let's say,
41:00
is not destroyed enough that you have to go to
41:03
surgery, you can be hopeful there are treatments
41:06
still out there and there are treatments on the
41:08
way, right? Yeah, exactly. So we want to end
41:12
on a high note and we also want to bring it full
41:14
circle back to Crohn's one more time. What are
41:19
some misconceptions that you've come across in
41:23
terms of Crohn's disease? Oh, misconceptions.
41:28
I think the big, first of all, people like get
41:32
confused between like Crohn's and like IBS or
41:36
IBD and IBS, very different autoimmune element.
41:40
for IBD not autoimmune for IBS that's the big
41:44
sort of misconception what other misconceptions
41:47
have I experienced I guess what we spoke about
41:51
earlier which is that you caused it yourself
41:53
you brought this on you you were too exactly
41:56
what you said you were too anxious or you decided
41:59
to take a medical intervention for a worldwide
42:04
global problem five or five years ago or something
42:08
and it's caused without without spelling out
42:12
and that caused your disease and as i say um
42:16
you're not that powerful hun you know i mean
42:22
maybe you wish you were you know you it's There's
42:27
so much more, there's so much more nuance. Your
42:30
immune system, your genetics, it's so much more
42:33
complicated. And yeah, maybe you can scale it
42:36
down to a simple sentence of you were genetically
42:39
susceptible, something that you did in the environment
42:42
triggered the spark. Yeah, but you're not a robot.
42:45
You're not immune to emotions. You're not immune
42:47
to going out every day and getting hit with whatever
42:49
hits you, you know? So I think that's the biggest
42:53
one I wanted to... I wanted to sort of address
42:57
and also I think the last point right hopefully
42:59
those with Crohn's and IBD in general are good
43:01
at this which is you can't necessarily keep up
43:04
with everyone else and it's okay to admit that
43:07
and actually it's probably the kindest thing
43:09
to do to accept that so listen to your body sleep
43:13
the extra hours if you can if you don't have
43:15
young kids rest and miss the workout if you know
43:20
the workout is potentially going to knock you
43:22
out for two three days Very well put. I completely
43:25
agree. I'm on the same page here. So looking
43:29
into the future, and I'm really interested to
43:32
see what you have to say. That's considering
43:34
the field that you're in. You're in your 30s.
43:36
I just kicked off my 40s. Will we see a cure
43:40
for IBD in our lifetime? I don't know if you've
43:43
been seeing the buzz, at least in the lupus space.
43:48
And there was this really fascinating, it was
43:51
like two other autoimmune diseases as well. An
43:53
amazing paper came out in New England Journal
43:55
of Medicine a couple of years back. But effectively,
43:58
they quote unquote cured these patients. Now,
44:03
we are very reluctant for now to use the word
44:07
cured. um for many reasons i think it's just
44:11
how do you define it for something that's not
44:13
even been cured before it's long -term remission
44:16
maybe definitely a lot of scientists would say
44:20
that but in terms of getting to long -term remission
44:23
we're seeing it for as i say for there was a
44:27
so the trial i'm talking about is again a cd19
44:30
car t trial it's repurposing what is being used
44:33
for blood cancers to autoimmune patients, because
44:38
the premise in like leukemias is you have these
44:41
rogue B cells that you just need to clear, at
44:44
least with B cell leukemias or B cell specific
44:46
cancers. If you just clear all the B cells, then
44:51
you clear that patient's cancer, right? So that's
44:54
kind of what's happening right now in the cancer
44:56
space. But then similarly with autoimmune diseases,
44:59
now, maybe this wouldn't apply to IBD. But with
45:03
like lupus, which is very B -cell driven, I mean,
45:06
when you think of antibodies against you, all
45:08
these autoantibodies, that's driven by B -cells
45:11
predominantly. I mean, B -cells make it. So if
45:14
you clear all the B -cells, then technically
45:16
you should be able to also put a patient into
45:18
remission. They've seen that now, which is really
45:20
cool. And this is like long term as in the last
45:22
when they followed up for a few years now. There's
45:25
no reason why we can't see that as well for IBD.
45:28
It maybe won't be a B -cell depleter, or maybe
45:30
some people are exploring B -cell depleters.
45:33
Could it be a T -cell depleter? That's maybe
45:35
riskier. But there are all these strategies that
45:39
weren't around a few years ago, or strategies
45:42
that we're seeing that have been working in different
45:45
diseases, but we're now repurposing them for
45:48
autoimmunity. So do I think we will see something
45:51
that will put us in long... indefinite remission
45:55
absolutely in our lifetime absolutely next 10
45:59
years probably i'm willing to say that so be
46:02
encouraged that's what i'll say i love that positivity
46:05
and and i think that is that is just the right
46:08
spot to to to end it so i i first of all want
46:11
to thank you so much for taking your time And
46:14
speaking with me, I want to thank you for really
46:15
hitting us with a lot of scientific knowledge.
46:18
I find it really, really fascinating and inspiring.
46:20
So keep fighting a good fight. You're also someone
46:24
who's very active on social media, especially
46:27
in representing your field and what's going on
46:30
there, IBG as well. So I encourage anybody who's
46:32
watching and listening to check that out as well
46:35
and find you there. And from my end, I just wish
46:39
you continuous luck with your Crohn's and also
46:42
with your field of expertise because uh it's
46:45
it's really utterly fascinating to me so thank
46:47
you so much for being with us today thank you
46:49
for having me on that's it for today's episode
46:53
of talking presented by colitis unfiltered i'm
46:57
frank tabering and if this hit home or hit your
47:00
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47:04
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47:07
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47:10
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47:13
bathroom floor.