Latest / Crohn's & Colitis Unfiltered / Ulcerative colitis, resilience and research: Maria’s refusal to give up

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Ulcerative colitis, resilience and research: Maria’s refusal to give up · Crohn's & Colitis Unfiltered

0:03
For me it's just like focusing on the things
0:05
that are like in my control right like I you
0:09
know I can't necessarily do all the things that
0:11
I could do before but I can go take a walk I
0:15
can you know go swimming I can do yoga which
0:18
is is great in so many ways and I think just
0:21
like keeping my focus on the things that I can
0:25
do today makes a really big difference because
0:28
I think it just helps me and my mind from thinking
0:31
about all of the things that could go or are
0:33
going wrong. This is Maria, who got diagnosed
0:37
with ulcerative colitis at age 23 in Raleigh,
0:41
North Carolina. When Maria was told that she
0:44
had exhausted all possible treatment options
0:46
and that surgery might be the best way to treat
0:50
her IBD, she decided to go a different direction
0:53
and find a clinical trial. Today, on the Colitis
0:57
Unfiltered podcast. She's going to tell us all
1:00
about that and how she's doing with her ulcerative
1:03
colitis. My name is Frank Tabering and Maria,
1:06
welcome to the show. Thank you so much for having
1:08
me. And thank you so much for talking to me about
1:10
your IBD journey. I just mentioned it started
1:13
at age 23. And my standard first question is,
1:17
tell me a little bit about how it all began for
1:21
you. What were your first symptoms? What prompted
1:23
you to seek medical care? Where did it all begin
1:28
for you? Yeah, I think that's a great question
1:30
because the journey can look so different for
1:33
everybody. I think for me, I... started seeing
1:36
blood in my stool. And at first I just kind of
1:39
brushed it off like, oh, you know, I'm just stressed
1:42
as if that's like a reasonable response to stress,
1:45
but that's fine. And I brushed it off for probably
1:47
several months until I got like very, very sick.
1:51
I was, you know, struggling to stay awake. I
1:53
couldn't drive anymore. Just so, so sick. And
1:55
finally. said, okay, it's time to go see someone
1:58
about this. I was very lucky in that I was able
2:02
to get scheduled for a colonoscopy very quickly.
2:04
I got my diagnosis very quickly. I know that's
2:07
not a standard experience by any means. I'm assuming
2:10
you sat in an office, a doctor's office, and
2:13
he or she told you you have ulcerative colitis.
2:17
As far as you can remember, what were the first
2:19
thoughts and emotions that went through your
2:22
head? Had you heard of IBD before? A completely
2:26
new word. And how did you process that information?
2:30
So my doctor actually came in after my colonoscopy
2:33
while I was in the post -op area, like still
2:36
kind of waking up from the anesthesia and said,
2:38
hey, you have this diagnosis. I'm going to prescribe
2:41
these pills. Pick them up on your way home. Don't
2:43
eat salads for a few days. And left. And that
2:46
was it. And so I, in my mind, I didn't realize
2:51
it was a chronic condition. I had never heard
2:53
of it before. And his reaction to me felt like
2:56
very casual. So I didn't really think anything
2:58
of it. I picked up my medication on the way home
3:00
and just kind of like went about my business
3:03
and, you know, started looking into it a little
3:05
bit more, started reading about it. And I got
3:08
very scared. I think, you know, you see a lot
3:11
of horror stories when you first start Googling
3:14
anything. So it was very scary at the beginning
3:17
until, you know, I started to find more people
3:19
that had. the same or similar diagnosis and just
3:23
kind of found a little bit more community and
3:26
also found a different specialist. And it, yeah,
3:28
became a bit easier after that. How did you navigate
3:32
life mentally, but also physically in the weeks,
3:38
months following your diagnosis? Yeah, I'll be
3:42
honest. It was very tough. Physically, I was
3:45
bedbound. I just... Didn't have the stamina to
3:48
get up and do much of anything. I had taken time
3:52
off of work as well. Mentally, also very challenging.
3:56
I didn't know anyone that had the diagnosis.
3:59
And when you Google it, you know, all of the
4:03
outcomes that you see are like really serious.
4:07
You know, people get really, really sick. I started
4:09
reading about people and their ostomies, etc.
4:12
It was really challenging. I think. The number
4:15
one thing that made it a little bit easier was
4:18
just having people to lean on and like a good
4:21
community. And in sharing a little bit about
4:23
my experience, I found friends who also had IBD
4:26
that just never spoke of it. So we were kind
4:28
of able to lean on each other that way. And it
4:30
was really helpful. During that time, you said.
4:33
You got prescribed some pills to start. So take
4:37
me a little bit through your treatment's journey.
4:39
What were you on after your diagnosis? Are you
4:42
still on that medication? And then ultimately,
4:45
I want to lead up to how you are feeling today
4:48
as well. Yeah, that's a good question. So I started
4:52
on... what I think is like the simplest kind
4:55
of IBD treatment. I started on prednisone and
4:57
misalamine. And that first go around, it worked
5:01
really well for me. I think I was back in remission
5:04
in a matter of weeks, maybe a few months. It
5:08
was very quick, very straightforward. It was
5:10
great. I had mentioned to you before, I didn't
5:13
understand at the time that it was a chronic
5:15
illness. And several months later, I had had
5:19
an insurance change. The misalamine was just
5:21
a lot more expensive and I didn't know what could
5:24
happen if you stopped taking your medications.
5:26
I was feeling better. I discontinued. And then
5:29
I think three years later, I entered my next
5:34
flare and I have been flaring ever since. So
5:38
I've tried a variety of different medications
5:41
since then. We tried the prednisone and misalamine
5:44
again. I've done a bunch of different biologics.
5:47
I'm currently taking mercaptopurine as well.
5:50
And I just have like completely refractory disease
5:53
right now. So I'm actually in a clinical trial
5:57
now looking at the use of a neurostimulator to
6:00
help with the management of IBD symptoms as well.
6:04
So really just kind of trying a little bit of
6:06
everything to see what might work, what might
6:10
help a little bit until more options are out
6:14
there, I guess. How active is the disease? So
6:17
are you able to actually have... sort of a certain
6:20
quality of life? Is it restricting you very badly
6:23
right now as you are in your trial and trying
6:26
to find sort of something that sticks for longer?
6:30
Yeah, that's a great question. I think the reason
6:33
that my quality of life is maintained is because
6:37
of the systems and the people that I have around
6:39
me. Like I'm lucky enough and blessed enough
6:42
to work from home. That alone is a huge... deal
6:47
I don't think I would be able to maintain a job
6:49
if I was having to leave my house from nine to
6:51
five every day mornings are very challenging
6:54
for me UC wise which I you know I think that's
6:57
the case for a lot of people so having to get
6:59
out of the house on top of that just would not
7:03
be like maintainable long term at all I think
7:06
socially as well I have friends and family that
7:09
are like very understanding of the disease and
7:13
like what that impact looks like. And I think
7:15
that they're very accommodating, right? Like,
7:17
if I can't go see someone, they'll come see me.
7:20
If, you know, I have to miss something, like,
7:23
that's okay, we'll find another time. And I think
7:25
having people that understand in that way is
7:28
really, like, valuable. 100%, 100%. So it's very
7:33
interesting, because it's pretty rare that I
7:35
talk to someone who is in the midst of a clinical
7:39
trial. And so I want to ask you more about this.
7:43
And my first question is, how did that come about?
7:47
Was it a conversation that you had with your
7:49
specialist and he told you basically, she told
7:51
you, listen, you've exhausted everything and
7:54
this is basically the only thing left to try
7:56
before, I don't know, we have to consider surgery.
7:58
So how did you get into that? And then I would
8:01
also like to know what that looks like day to
8:04
day, this clinical trial specifically that you're
8:07
on. The way I got here was actually the opposite
8:10
of what you mentioned. My doctor told me that
8:13
we've exhausted all options. It's time for surgery.
8:16
And I just I'm not there yet mentally. I don't
8:21
feel that I'm there yet physically either. But,
8:22
you know, subject to opinion. So I started looking
8:25
for other options like I know these trials exist.
8:30
So like, what are they? What are my options?
8:32
Like, there's no way that it ends here. Right.
8:35
And so. There's a lot of different things out
8:38
there, but this one to me was the most interesting.
8:41
So I see a team up at Columbia University in
8:44
New York. I met with the doctors there. And what
8:47
they did was implant a neurostimulator into my
8:50
sacral nerve. And it goes off, I think it's for
8:56
30 seconds every three minutes. And I don't feel
8:59
it. It's, you know, it's undetectable. And the
9:01
idea is to see like if that can kind of help.
9:05
regulate some of like the brain gut pathways
9:08
that we experience as people with IBD. I think
9:11
the primary endpoint for this study is specifically
9:14
around urgency, but I know they're measuring
9:17
kind of across the spectrum of symptoms. So I'm
9:20
in it now. I've had my neurostimulator for about
9:23
three months. Transparently, I have not personally
9:26
seen too much of a difference yet, but I have
9:29
my first round of like checkup testing later
9:32
this week. So we'll see if... you know, the numbers
9:34
show any improvement. And you're not on any additional
9:37
medication then currently? I am actually. So
9:41
I also take mercaptopurine and I do Tremphia
9:44
injections once a month. Okay. Okay. So it's
9:47
kind of like a combination therapy alongside
9:48
the clinical trial. Is that part of the clinical
9:51
trial or is that sort of just a... something
9:53
separate that you've discussed maybe with your
9:55
specialist? Yeah. So that's the treatment that
9:57
I was on before we started. I think the idea
10:00
behind the device is that it's meant to be like
10:02
a supplementary treatment. The study specifically
10:05
looks at populations with refractory or like
10:08
unresponsive disease. And so I think, you know,
10:12
trying to keep like all things the same, you
10:13
would maybe want to stay on your prior therapy.
10:16
Yeah. Okay. That makes sense. Yeah. So we talked
10:19
a little bit about treatments. What other lifestyle
10:21
changes have you undergone since your diagnosis?
10:25
And I know you mentioned stress is something
10:27
that, you know, you kind of can control a little
10:30
bit more by being surrounded by people who support
10:33
you, by working from home. But what else have
10:35
you done? Have you had any changes in diet or
10:38
like, you know, any different activities that
10:42
you've done that you've changed since your diagnosis?
10:45
Yeah I think the biggest one for me I used to
10:47
really enjoy lifting at the gym I used to do
10:50
that maybe four times a week at a minimum and
10:53
now it's something that I really can't do at
10:55
all anytime I have tried I think just like that
10:59
level of bodily inflammation just kind of triggers
11:03
a spectrum of symptoms and it just hasn't been
11:07
worth it so I think like style of exercise has
11:10
changed dramatically I do a lot of walking now
11:13
it's kind of the only thing that I can consistently
11:17
handle and like not have to worry about it too
11:20
much I think from a nutrition perspective like
11:23
I haven't personally found any one food that
11:26
like oh this is a trigger I think more so just
11:29
like you know trying to like eat more like minimally
11:32
processed foods like trying to find like healthier
11:34
alternatives I do eat like lower fiber just to
11:38
try to help like mitigate some of that irritation
11:42
But yeah, I haven't really found like one thing
11:44
that just kind of sends it over the edge. Do
11:47
you ever experience any regrets or anger at yourself
11:51
that, you know, you kind of stopped your initial
11:55
treatment for a while and then realizing that
11:57
potentially this is something that kind of threw
11:59
you into the mess that you're in right now? All
12:02
the time. All the time. It was one of those things
12:06
where like, I just, I just didn't know, right?
12:09
And I think I... stayed with that anger for a
12:14
long time but you know as time has gone on in
12:17
this flare like i feel like you know you adjust
12:19
like you find ways to keep moving forward and
12:22
i think like at the end of the day like i made
12:26
a decision with the information that i had and
12:28
you know i like i have to leave it there it just
12:31
kind of is what it is is that basically what
12:33
you tell yourself to to to accept what happened
12:36
yeah i i can't change it right like It happened.
12:40
I'm in a flare. I've been in a flare. And being
12:45
angry about it is not going to change it. It's
12:49
just not going to change it. In fact, it might
12:50
set me back. So yes, especially when I'm, you
12:55
know, feeling extra sick or having just like
12:57
a really bad symptom day. Yes, I definitely do
13:00
think back. But I was what, 23 years old? I was
13:06
young. I didn't know anything about it. Yeah,
13:08
I don't know. I didn't know. I would never fault
13:12
someone else for making a decision about something
13:14
they didn't know. So I think holding myself to
13:17
that is just not productive. We agree that there's
13:20
something going on with this brain -gut connection,
13:22
100%, right? I always say that having a lot of
13:26
positivity in your life or fighting spirits can
13:30
have a certain impact on what's happening with
13:32
your body. Being told that... surgery might be
13:37
the only option and then you refusing to go that
13:41
direction right you taking on basically your
13:43
own adventure and trying to find something different
13:46
has your approach to to surgery changed at all
13:51
now that you kind of went on your own journey
13:55
or how do you deal with this potential fear that
13:59
well if this doesn't work where else am i gonna
14:02
go That's a great question. I actually just had
14:07
this conversation with my husband two days ago.
14:09
I don't know what happens next if the trial doesn't
14:13
work, but I can tell you I'm not at a surgery
14:16
place yet. I am a very stubborn, hard -headed
14:21
person. I've been that way since I was a kid,
14:25
and I don't see that changing anytime soon. I
14:29
think there is definitely a place for surgery.
14:31
I'm not saying I would never. do it. I do think
14:35
that maybe not on paper, because I know that
14:40
my like inflammatory markers are pretty high.
14:43
But just based on how I feel, I don't feel that
14:46
sick. And I know that my if my doctor were to
14:49
hear me say that he would probably cringe. But
14:51
it's true. Like I if I have the means to just
14:54
kind of keep going this way, like why would I
14:57
opt for a permanent option when there's so much
15:00
research happening so many options being explored
15:03
and like it seems like almost every year there's
15:06
a new IBD treatment that is approved that we're
15:09
seeing the ads for on tv so it just feels like
15:12
very premature to not exhaust every single option
15:16
before going for like a permanent I don't want
15:20
to call it a solution because it also comes with
15:22
its own like list of concerns that you have to
15:25
watch out for right but it's a relief for a lot
15:26
of people I mean And despite, you know, that's
15:30
usually what the result is that it's not a cure,
15:34
but it does give people their quality of life
15:38
back. But it does sound like you have a pretty
15:40
high pain tolerance, right? So why just toss
15:44
in the towel, right? And not try and fight as
15:48
long as you can, at least. So I think you're
15:49
doing the right thing. Yeah, absolutely. So you
15:53
were 23 when you were diagnosed. It's still a
15:56
young age, honestly, if we look at, you know,
15:58
a lifespan of a human being. So that's why I'm
16:01
not going to ask you how your IBD has shaped
16:04
you. Because again, you know, 23, you're an adult.
16:08
But how has this disease changed you as a person
16:11
over the years? Yeah, I think it's really just
16:14
changed my view on life. I think it puts a lot
16:19
of things into perspective. have definitely had
16:22
times where I was so sick I was hospitalized
16:25
um at a certain point like we thought I had sepsis
16:30
and like was just like very very sick and I think
16:33
coming back from that really just like changes
16:36
how I perceive the world I feel like that sounds
16:42
like so cheesy but really like I the things that
16:45
used to stress me out before feel so small now
16:48
in the grand scheme of things like whatever it
16:52
is, like if I can work my way through that, I
16:54
can work my way through like day -to -day challenges.
16:57
I think it's made me a lot tougher. It's like
17:00
trial by fire, you know? It takes a certain amount
17:04
of pressure to like refine a person in a certain
17:07
way. And I think because of that, yeah, I am
17:10
a lot tougher. I'm a lot grittier. Sorry, I'm
17:15
getting a little bit emotional about it. I think
17:18
the other thing too is it's... made me so grateful
17:22
for the people in my life and I know I've mentioned
17:24
that a few times but like I I don't know where
17:27
I would be without my husband like he absolutely
17:31
has like saved my life in a very literal way
17:35
and I think without him I would be in a very
17:38
different place and and same goes for my friends
17:40
and my family So let's stay on that subject for
17:43
a second. How has sort of colitis affected your
17:46
relationships then? And relationships doesn't
17:48
need to be only romantic, but could be family
17:50
relationships, friendships. Yeah, I think being
17:54
friends with someone who is constantly sick is
17:58
hard. I get that, right? Like I am the friend
18:02
that had to cancel plans abruptly or couldn't
18:06
come to things or couldn't answer the phone or,
18:09
you know. just whatever it may be like I definitely
18:12
did have to just lay low for a little bit and
18:17
I think when you're not living it like day to
18:21
day it's kind of hard to see how even just like
18:27
the smallest stressor can really impact like
18:32
how a day is gonna go for example and so yeah
18:36
I definitely have friendships that like faded
18:39
out a little bit just you know you don't see
18:41
someone or you haven't chatted in a while and
18:43
it just kind of fades but I definitely have friendships
18:47
that have gotten a lot stronger and it's the
18:50
friends who like will continue to check in or
18:53
know that you have a doctor's appointment and
18:55
will ask you how it went or like little things
18:58
like that they just kind of do what they can
19:00
to like keep up where they can I have a very
19:04
close -knit group of friends here that I'm so
19:06
thankful for and like After I was hospitalized
19:09
most recently, like I wasn't comfortable seeing
19:12
people yet because I was just still very sick.
19:14
And so they're like sending groceries to my door,
19:16
sending flowers, like whatever it may be, just
19:19
like showing up how they can. I always refer
19:22
to IBD as a blessing and a curse. The curse is
19:24
obvious. So it seems that at least that part
19:26
of your life, those relationships that you were
19:28
able to maintain is a blessing than coming out
19:30
of this whole mess. A hundred percent. Yeah,
19:34
I think my my friendships are so much stronger.
19:37
I've also connected with people who I, you know,
19:40
considered to be acquaintances who were going
19:42
through something similar. And now we have this
19:44
bond in common that it's really hard to explain
19:49
to someone that hasn't experienced it. So I've
19:51
grown a lot of relationships that way as well.
19:53
Yeah. So as someone who. has really benefited
19:57
from extraordinary support through these tough
20:00
times and through your IBD journey. What would
20:02
your pieces of advice be for people who are supporting
20:06
someone with IBD, who are loving someone with
20:10
IBD, who might be lost a little bit on how to
20:13
talk to that person, approach that person, be
20:15
there for that person? What would you tell those
20:17
people? Yeah, that's a great question. I have
20:19
to tell you, I think my husband would be the
20:21
ideal person to answer that for you. But if I...
20:25
If I had to guess, I would say like just talk
20:27
about it. You know, it's already I think that
20:29
because like IBD is a poop disease, it can feel
20:33
uncomfortable to talk about. But truly, like
20:36
there's nothing anyone could ask me that I wouldn't
20:39
answer at this point. Sometimes like just having
20:42
people, you know, curious or asking questions
20:45
like opens the door to a lot of more personal
20:48
conversations where you can share. some of the
20:51
challenges and, you know, I don't necessarily
20:53
need a solution, right? Like there's, there really
20:56
isn't much that anyone can provide you in terms
20:58
of solution, but just having someone to lock
21:01
with you and carry the burden with you makes
21:03
such a big difference. A hundred percent, a hundred
21:06
percent. So as a, as a young woman who spent
21:11
most of her twenties with this disease, how has
21:14
your relationship with your body changed or suffered
21:17
because of ulcerative colitis? Yeah, it's really
21:20
challenging. I think baseline, I am always bloated
21:23
all the time. It like never goes away. At the
21:27
peak of my prednisone use, I had put on, I think
21:33
like 40 pounds. I'm only five foot three, so
21:35
it showed like pretty aggressively on my frame.
21:38
And it's not nice to go from, you know, being
21:41
someone that works out all the time to not being
21:43
able to work out. And then on top of that, putting
21:45
on quite a bit of weight, it was really uncomfortable.
21:49
Like I, you know, spent a lot of time like kind
21:51
of avoiding like looking in the mirror or, you
21:54
know, just like avoiding like those types of
21:56
interactions, like not taking photos at events
21:59
or like not posting photos after events because
22:02
I just don't, I don't look like myself. Like
22:04
I don't recognize myself and it's uncomfortable.
22:07
I also like had people that would see me and
22:09
be like, oh, you've put on some weight. And I'm
22:12
like, yes, I have. Like, thank you for noticing.
22:15
Like, what do you say to that? And so that was,
22:18
it was really challenging. And I think now having
22:22
lost about 40 pounds, it still looks very different,
22:28
right? Because I lost quite a bit of muscle mass
22:30
in that process. So even still, it's like a new
22:33
body to like learn and adjust to and like figure
22:37
out. I think it's very challenging in the body
22:41
image department. How do you deal with that then?
22:43
How do you learn? Are you looking at yourself
22:50
in the mirror and you're telling yourself that
22:53
you're going to go back to where you were? What's
22:55
the mental work that you're doing day by day
23:00
to reconnect with your body and to sort of accept
23:05
it as well? For me, it's just like focusing on
23:08
the things that are in my control. you know,
23:12
I can't necessarily do all the things that I
23:14
could do before, but I can go take a walk. I
23:17
can, you know, go swimming. I can do yoga, which
23:21
is great in so many ways. And I think just like
23:24
keeping my focus on the things that I can do
23:28
today makes a really big difference because I
23:31
think it just helps me and like my mind from
23:33
like thinking about all of the things that could
23:35
go or are going wrong. So you mentioned to me
23:39
earlier that you were a lot tougher, you're a
23:41
lot stronger than you were before your diagnosis.
23:45
If I'm someone who just got diagnosed with ulcerative
23:48
colitis and I'm afraid, I don't know where to
23:52
go really. I've read the same horror stories
23:56
that you've read, you know, after you got diagnosed
23:57
and you did your own research. What would you
24:01
tell a person like that, knowing what you know
24:03
and after what you've lived so far with diabetes?
24:08
it's gonna be okay and what okay looks like might
24:12
be different than what you think it will be or
24:15
what you want it to be but it will be okay not
24:18
to say that it's not gonna be hard or you know
24:24
painful it definitely you know it probably will
24:27
be but I think there's also like there's still
24:32
joy to be had In life and in the disease, you
24:37
called it a blessing and a curse. I couldn't
24:39
agree with that more. And so I think like it's
24:42
okay to be scared or to be angry, but don't let
24:46
that stop you from also like experiencing joy
24:51
and happiness throughout the process as well.
24:54
Are those the exact same words that you would
24:56
tell yourself at age 23 at the moment of diagnosis
24:59
if you could go back and talk to your younger
25:02
self? I think that would be a big part of it
25:05
because I think that was the biggest hurdle for
25:07
me mentally. I think I would also say, like,
25:10
ask questions. There are no dumb questions in
25:15
a life -altering diagnosis. Ask questions, and
25:18
if you're not getting answers, find someone else
25:20
to ask. I think I... stuck with my gastroenterologist
25:26
for a long time because I don't know, like switching
25:29
doctors felt weird. It felt wrong. I don't know
25:32
why. And it just got to a certain point where
25:34
I was like, this is like not, it's like a breakup.
25:36
Like this is not working out. Like I can't keep
25:39
doing this. And I think, you know, had I found
25:43
a different doctor sooner, maybe the outcome
25:45
would have been the same, but at least like I
25:47
would have had peace of mind earlier on. So yeah,
25:50
ask questions, do the reading. Yeah. And don't
25:56
be afraid to fire your gastroenterologist if
26:02
after a while, you know, you don't see any results.
26:05
I always say that because I know people myself
26:08
who are suffering for a long time. And then I
26:13
ask, okay, so what's your relationship with your
26:15
doctor? And it's almost like they become defensive
26:18
in a way, like they owe something to that person,
26:21
you know, and then I'm standing on the outside
26:22
looking and be like, oh, but if you just... switch
26:25
doctors you might be able to find somebody who's
26:27
a lot more proactive it might help it might not
26:30
help your suffering but it might right yeah and
26:33
it just feels like there's just something that
26:36
ties into it and I'm the biggest you know advocate
26:38
for if you find the doctor that really works
26:41
for you I mean hold on to them for dear life
26:43
my doctor you know back when I used to live in
26:46
LA I switched hospitals and my first question
26:48
was can I come with you right even though I knew
26:50
that I would still receive great care if I had
26:54
stayed, you know, and maybe, you know, would
26:56
switch doctors. But it's just, you know, this
27:00
is one of those things where I feel a lot of
27:02
people miss out on remission or earlier remission
27:08
just by, like you say, not asking enough questions
27:11
or feeling guilty, you know, by even having the
27:15
thought of like, oh, maybe I should seek a different
27:18
doctor. Yeah, I think that's a big thing. I'm
27:23
happy for you that you came to that point where
27:26
you said enough is enough and you took matters
27:29
into your own hands. My final question, it's
27:32
a tricky one, but I like to ask it anyway because
27:35
I'm just curious to see what people think. So
27:38
even though you are currently not necessarily
27:41
following what we call conventional treatment,
27:45
even though you are, but... Clinical trials,
27:48
it's sort of a completely different world out
27:50
there. Do you think that we would see a cure
27:55
to IBD in our lifetime? I certainly hope so.
27:59
I like to think that we will. Most recently I
28:04
read about, it's not a trial, right? We're talking
28:07
about one patient who underwent CAR -T cell therapy,
28:10
which is typically used to treat cancer, right?
28:15
extreme B -cell depletion. And that patient went
28:19
into full like histologic remission, no medication,
28:26
like no additional interventions. Like they're
28:30
on paper, at least like, at least in remission,
28:34
maybe cured. We don't know yet. Right. But I
28:37
think even just seeing something like that in
28:41
one person gives me so much hope. Like people
28:45
are doing the work. People are working really,
28:48
really hard to try to find long -term solutions.
28:54
And so I am very hopeful that we will find a
28:57
cure in our lifetime. I read about this as well
29:00
and it's super promising and actually kind of
29:02
exciting as well. at all in the medical field,
29:05
but I read these things and I'm like, okay, mind
29:07
blown, number one. And number two, you know,
29:09
the hope just kind of grows or stays alive. And
29:12
what better way to end than with hope? So Maria,
29:16
thank you so much for taking the time and also
29:18
sharing your journey. From my side, I wish you
29:21
nothing but the best with your clinical trial.
29:24
And I really do hope that, you know, it will
29:26
help you and it will work out. And if not, like
29:29
you said yourself, you know, there's always something
29:31
else out there. And sometimes... You might just
29:33
have to go out on your own and find it. So all
29:37
the best to you. And thanks again for being here
29:39
today. Thank you so much. And thank you for having
29:41
me. That's it for today's episode of Colitis
29:45
Unfiltered. I'm Frank Tabering. And if this hit
29:48
home or hit your gut, do us a favor. Subscribe
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29:58
and Reddit. We'll see you soon for more inspiring
30:01
stories from the bathroom floor. Thank you.