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