August 11, 2024 • 14 mins
Original Air Date: August 11, 2024
Maybe that come-and-go stomach problem isn’t just a touchy tummy. It could be Crohn’s Disease or Colitis. How to tell and how to get support and info? Michael Osso is the CEO of the Crohn’s & Colitis Foundation.
Maybe that come-and-go stomach problem isn’t just a touchy tummy. It could be Crohn’s Disease or Colitis. How to tell and how to get support and info? Michael Osso is the CEO of the Crohn’s & Colitis Foundation.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome to Sunstein Sessions on iHeartRadio, Conversations about issues that matter.
Here's your host, three time Grasie Award winner, Shelley Sunstein.
Speaker 2 (00:10):
I want to reintroduce you to a personal friend. Michael
Asso is the CEO of the Crones and Kalitis Foundation,
and I've been kind of open about the fact that
my youngest uh has been suffering from a very aggressive
case of crones since she was seventeen. I say since
(00:32):
she was seventeen, because there were symptoms before you're born
with it, and it comes out when it comes out,
and most people go into remission, and my daughter unfortunately
has a very aggressive case. And the Crones and Kalitis
Foundation and Michael has been very, very helpful to me,
and so I wanted to bring Michael on because I
(00:55):
know there are people listening who are not aware of
the crones and Kalitis found and not aware of the
support they could have for you. So, first of all,
welcome back, Michael, and in a nutshell, just explain what
you offer to the community, and they're based here in
New York City.
Speaker 3 (01:15):
Thank you so much, Shelley. It's always a pleasure to
chat with you and your audience, so thanks for having me.
The Crones and Clitus Foundation has a two pronged mission.
We aim to cure the diseases and also improve the
quality of life of children and adults that are battling
crones and clitis. So we fund a lot of research
(01:37):
in scientific research to get to better treatments and ultimately cures.
But we also want to help people along their journey,
so we have education programs and emotional support programs. We
host a camp for kids with crones and clitis in
the summer. We do a lot of advocacy and public
policy work because we're aiming to pass legislation that will
(02:00):
ease the burdens associated with these diseases. So we've been
around for fifty seven years. We're headquartered in New York,
as you just said, but we have thirty four offices
around the country and our aim is to help the
millions of people struggling with inflammatory bowel disease. And of
course they are family and friends who are such an
(02:21):
important part of their care as you.
Speaker 2 (02:24):
Know, Yes, how does somebody know if they have crones
or colitis? How are those symptoms different from oh, I
have a bad stomach.
Speaker 3 (02:38):
Yeah, it's such a good question, Shelley, because it can
be quite confusing, and we are a disease state that
really struggles with delayed diagnosis. And it's exactly for the
reasons you already pointed out, which is some of the
symptoms can be confused by other things. Primary symptoms in
(03:00):
our disease are severe abdominal pain, fatigue, recto bleeding, and diarrhea.
When some of those things are on the milder side, especially,
they're often confused with other stuff. So our patients can't
really be well diagnosed unless they see a gas or entrologist,
(03:20):
and unless they really have a colonoscopy to understand what's
happening inside. To frankly, take a tissue sample from your
intestines and test it. That's when people get a real diagnosis.
And often our patients avoid those kinds of exams and
tests for a long time, sometimes years.
Speaker 2 (03:44):
You know, it's interesting that you mentioned that you have
a camp. There's a camp for children with groans and colitis.
Are most people diagnosed as children or I thought most
people are diagnosed as adults.
Speaker 1 (04:04):
YEA.
Speaker 3 (04:05):
Our estimate is that somewhere between twenty five and thirty
percent of patients are diagnosed as kids or teens or
young adult. So it is a disease very often that
presents itself when people are young, So your daughter at
seventeen is not unusual at all. Of Course, young people
(04:29):
grow into adults, so they often are battling the disease
for many, many years as an adult, but its first
presentation is often as a young person.
Speaker 2 (04:41):
I saw in your literature that one in one hundred
people in the United States have crones or colitis. But
given the fact that maybe not everybody who has it
as diagnosed, what would you say is the real estimate
of the population who has it? Because there are people
(05:03):
walking around who have it who don't know that have
it because they haven't been diagnosed. As you point out,
it's you know, not everybody is going to go for
a colonoscopy, or in my daughter's case, she I think
she was diagnosed with a cat scan. I mean, she
has such a bizarre case that when she has a flare,
(05:25):
it's not diagnosed by the normal standards. She'll come up, oh, no,
you're not having a flare, and then one test will
show oh, yeah, there is a flare. But again her
case is unusual.
Speaker 3 (05:39):
Yeah, and you know, increasingly the field is using imaging
like that to diagnose, so I think we're moving in
that direction of less invasive testing, which is great. But
in answer to your first question, the field is very
much in agreement that it is likely more than one
(06:02):
in one hundred Americans, and there is really no good
way to estimate that. But as we've already been talking about,
there's delay and diagnosis. People confuse these symptoms, they're embarrassed
by these diseases, so they often leave them unattended, and
all of that stuff leads to not a good understanding
(06:25):
of exactly how many. So I would say the safe
assumption is that it's probably more than one in one hundred.
Speaker 2 (06:32):
I'm speaking with Michael Osso. He is the CEO of
the Crones and Coalitis Foundation, which has a two pronged purpose,
first of all, supporting the crones and coalitis community and
the family members who are dealing with this, but also
dealing with research. And that to me is the key
(06:55):
because when my daughter was diagnosed, we were told there
is no cure. Is that no cure for chrones? Is
that still the case? And what advances have been made
in terms of research? What is the latest.
Speaker 3 (07:13):
Yes, So first, unfortunately I have to confirm that these
are still incurable diseases. There are no known cures for
either chrones or colitis, so at the moment they are
chronic and lifelong for people who are diagnosed with them.
But the good news is that there's been enormous advancement
(07:35):
of research and new treatments on the market, and especially
in the last decade. We are worlds away from where
we were ten years ago. There are any number of
really sophisticated biologic and other small molecule drugs that are
now approved and are available to chrones and Clytis patients.
(07:59):
They've been gained changing these last ten years for lots
of our patients, not for all of our patients though,
So there's a terrific armamentarium now and lots of choices
that clinicians can make with their patient, and they're all
good and sometimes really good drugs, and none of them
are great. So lots of progress. Very grateful for the
(08:22):
work of our organization and all the researchers around the world,
and we still have a lot of important work to
do if we're going to get to a remission for
every patient and importantly full on cures for every patient.
But I'm so hopeful about the next decade. I'm expecting
(08:42):
it to be even better than this past decade. There's
lots of work going on around the world. Lots of
new drugs are in the pipelines of pharmaceutical companies right now.
There's a lot of activity and enthusiasm because of the
deep understand for these diseases which we've developed over the
(09:02):
last several decades.
Speaker 2 (09:05):
You see a lot of commercials on TV for a
number of these drugs, and then they also at the
end of the commercial list the side effects, and some
of the side effects sound frankly worse than dealing with
the disease. How much progress have we made in terms
(09:29):
of that? Because I know that the line of drugs
that's used as the first defense lowers your immune system,
so whereas it can attack the crones and colitis, you
could end up getting everything that comes down the path
because your immune system is so severely compromised.
Speaker 3 (09:52):
Yeah, crones and colitis are immune mediated diseases, so your
immune system is very much involved and frankly a culprit
in the symptoms that a patient experiences. So many of
the drugs on the market have an immune suppressing or
(10:14):
immune altering effect. It's one of the ways in which
we're able to address the key and sometimes severe symptoms.
But what I would also say is that the FDA,
they have very stringent criteria for how a drug advances
through human clinical trials, and assessing the safety of those
(10:39):
drugs is very rigid and thorough. That's good for all
of us. So some of those side effects to drugs
are real, but it is a small percentage of people
that experience them, and our clinicians would say over and
over again, it is absolutely worth it for many of
(11:00):
our patients to go down that path because for many
of them they don't experience side effects, and for some
of them the side effects are more minimal. But that's
a conversation, of course, that has to happen between patient
and clinician. And I think the whole clinical community has
gotten so much more sophisticated understanding the impact that these
(11:22):
drugs have, both positive and negative.
Speaker 2 (11:24):
A number of years ago, I read about a possible
treatment that well, people frankly laugh at it's a crap pill.
It's using right, the feses of a very someone with
a very healthy gut turning that into a pill and
(11:48):
then treating these very unhealthy guts. Where are we in
that process? Where are we with that?
Speaker 3 (11:56):
It's a good question the you know, the the CRNS
and client has found. We support a wide array of research.
We want to leave no stone unturned. We've invested five
hundred million dollars in research and have supported twenty five
hundred research projects, and we're really grateful that we've played
(12:18):
a critical role in the research that's led to every
drug that's on the market now. So we throw the
net wide. We want to explore lots of things, and
one of the things that we have invested money in
is understanding fecal transplantation to the point that you just made,
(12:38):
and really importantly understanding one's microbiome, so the bacteria, the viruses,
the fun guy that live inside your gut. We know
that that collection of bugs is having a really significant
(12:58):
impact on the disease, potentially the onset of it and
certainly the progression of it. So broadly speaking, we're investing
in a ton of stuff that is exploring altering the microbiome.
How do you alter it in a more sophisticated way,
frankly than swallowing a poop pill and just taking somebody
(13:19):
else's we think good poop putting it in your body.
So the field has come such a long way in
understanding the microbiome and figuring ways to alter it to
benefit our patients.
Speaker 2 (13:33):
People that are listening who might have questions or need
some help, how do they contact the Crones and Colitis Foundation.
Speaker 3 (13:41):
I appreciate that, I would say in all modesty, we
have a phenomenal website, so people should certainly start there.
It's Cronescalitisfoundation dot org. And please follow us on social media.
We're using social media to help continue to educate people,
(14:03):
but start with our website. Explore what is important to you,
whether you're a patient or a caregiver or a healthcare professional,
whether you're newly diagnosed or just have questions about symptoms.
You can follow the appropriate path on our website and
gather a lot of information. We also have an IBD
help Center, and you know we will take inquiries by email,
(14:28):
through Facebook or making a phone call and for free
help answer some of your questions. So those are two
good ways to start.
Speaker 2 (14:38):
Well, I thank you so much, Michael.
Speaker 1 (14:40):
Also, you've been listening to Sunstein sessions on iHeartRadio. A
production of New York's classic rock Q one O four
point three
Welcome to Sunstein Sessions on iHeartRadio, Conversations about issues that matter.
Here's your host, three time Grasie Award winner, Shelley Sunstein.
Speaker 2 (00:10):
I want to reintroduce you to a personal friend. Michael
Asso is the CEO of the Crones and Kalitis Foundation,
and I've been kind of open about the fact that
my youngest uh has been suffering from a very aggressive
case of crones since she was seventeen. I say since
(00:32):
she was seventeen, because there were symptoms before you're born
with it, and it comes out when it comes out,
and most people go into remission, and my daughter unfortunately
has a very aggressive case. And the Crones and Kalitis
Foundation and Michael has been very, very helpful to me,
and so I wanted to bring Michael on because I
(00:55):
know there are people listening who are not aware of
the crones and Kalitis found and not aware of the
support they could have for you. So, first of all,
welcome back, Michael, and in a nutshell, just explain what
you offer to the community, and they're based here in
New York City.
Speaker 3 (01:15):
Thank you so much, Shelley. It's always a pleasure to
chat with you and your audience, so thanks for having me.
The Crones and Clitus Foundation has a two pronged mission.
We aim to cure the diseases and also improve the
quality of life of children and adults that are battling
crones and clitis. So we fund a lot of research
(01:37):
in scientific research to get to better treatments and ultimately cures.
But we also want to help people along their journey,
so we have education programs and emotional support programs. We
host a camp for kids with crones and clitis in
the summer. We do a lot of advocacy and public
policy work because we're aiming to pass legislation that will
(02:00):
ease the burdens associated with these diseases. So we've been
around for fifty seven years. We're headquartered in New York,
as you just said, but we have thirty four offices
around the country and our aim is to help the
millions of people struggling with inflammatory bowel disease. And of
course they are family and friends who are such an
(02:21):
important part of their care as you.
Speaker 2 (02:24):
Know, Yes, how does somebody know if they have crones
or colitis? How are those symptoms different from oh, I
have a bad stomach.
Speaker 3 (02:38):
Yeah, it's such a good question, Shelley, because it can
be quite confusing, and we are a disease state that
really struggles with delayed diagnosis. And it's exactly for the
reasons you already pointed out, which is some of the
symptoms can be confused by other things. Primary symptoms in
(03:00):
our disease are severe abdominal pain, fatigue, recto bleeding, and diarrhea.
When some of those things are on the milder side, especially,
they're often confused with other stuff. So our patients can't
really be well diagnosed unless they see a gas or entrologist,
(03:20):
and unless they really have a colonoscopy to understand what's
happening inside. To frankly, take a tissue sample from your
intestines and test it. That's when people get a real diagnosis.
And often our patients avoid those kinds of exams and
tests for a long time, sometimes years.
Speaker 2 (03:44):
You know, it's interesting that you mentioned that you have
a camp. There's a camp for children with groans and colitis.
Are most people diagnosed as children or I thought most
people are diagnosed as adults.
Speaker 1 (04:04):
YEA.
Speaker 3 (04:05):
Our estimate is that somewhere between twenty five and thirty
percent of patients are diagnosed as kids or teens or
young adult. So it is a disease very often that
presents itself when people are young, So your daughter at
seventeen is not unusual at all. Of Course, young people
(04:29):
grow into adults, so they often are battling the disease
for many, many years as an adult, but its first
presentation is often as a young person.
Speaker 2 (04:41):
I saw in your literature that one in one hundred
people in the United States have crones or colitis. But
given the fact that maybe not everybody who has it
as diagnosed, what would you say is the real estimate
of the population who has it? Because there are people
(05:03):
walking around who have it who don't know that have
it because they haven't been diagnosed. As you point out,
it's you know, not everybody is going to go for
a colonoscopy, or in my daughter's case, she I think
she was diagnosed with a cat scan. I mean, she
has such a bizarre case that when she has a flare,
(05:25):
it's not diagnosed by the normal standards. She'll come up, oh, no,
you're not having a flare, and then one test will
show oh, yeah, there is a flare. But again her
case is unusual.
Speaker 3 (05:39):
Yeah, and you know, increasingly the field is using imaging
like that to diagnose, so I think we're moving in
that direction of less invasive testing, which is great. But
in answer to your first question, the field is very
much in agreement that it is likely more than one
(06:02):
in one hundred Americans, and there is really no good
way to estimate that. But as we've already been talking about,
there's delay and diagnosis. People confuse these symptoms, they're embarrassed
by these diseases, so they often leave them unattended, and
all of that stuff leads to not a good understanding
(06:25):
of exactly how many. So I would say the safe
assumption is that it's probably more than one in one hundred.
Speaker 2 (06:32):
I'm speaking with Michael Osso. He is the CEO of
the Crones and Coalitis Foundation, which has a two pronged purpose,
first of all, supporting the crones and coalitis community and
the family members who are dealing with this, but also
dealing with research. And that to me is the key
(06:55):
because when my daughter was diagnosed, we were told there
is no cure. Is that no cure for chrones? Is
that still the case? And what advances have been made
in terms of research? What is the latest.
Speaker 3 (07:13):
Yes, So first, unfortunately I have to confirm that these
are still incurable diseases. There are no known cures for
either chrones or colitis, so at the moment they are
chronic and lifelong for people who are diagnosed with them.
But the good news is that there's been enormous advancement
(07:35):
of research and new treatments on the market, and especially
in the last decade. We are worlds away from where
we were ten years ago. There are any number of
really sophisticated biologic and other small molecule drugs that are
now approved and are available to chrones and Clytis patients.
(07:59):
They've been gained changing these last ten years for lots
of our patients, not for all of our patients though,
So there's a terrific armamentarium now and lots of choices
that clinicians can make with their patient, and they're all
good and sometimes really good drugs, and none of them
are great. So lots of progress. Very grateful for the
(08:22):
work of our organization and all the researchers around the world,
and we still have a lot of important work to
do if we're going to get to a remission for
every patient and importantly full on cures for every patient.
But I'm so hopeful about the next decade. I'm expecting
(08:42):
it to be even better than this past decade. There's
lots of work going on around the world. Lots of
new drugs are in the pipelines of pharmaceutical companies right now.
There's a lot of activity and enthusiasm because of the
deep understand for these diseases which we've developed over the
(09:02):
last several decades.
Speaker 2 (09:05):
You see a lot of commercials on TV for a
number of these drugs, and then they also at the
end of the commercial list the side effects, and some
of the side effects sound frankly worse than dealing with
the disease. How much progress have we made in terms
(09:29):
of that? Because I know that the line of drugs
that's used as the first defense lowers your immune system,
so whereas it can attack the crones and colitis, you
could end up getting everything that comes down the path
because your immune system is so severely compromised.
Speaker 3 (09:52):
Yeah, crones and colitis are immune mediated diseases, so your
immune system is very much involved and frankly a culprit
in the symptoms that a patient experiences. So many of
the drugs on the market have an immune suppressing or
(10:14):
immune altering effect. It's one of the ways in which
we're able to address the key and sometimes severe symptoms.
But what I would also say is that the FDA,
they have very stringent criteria for how a drug advances
through human clinical trials, and assessing the safety of those
(10:39):
drugs is very rigid and thorough. That's good for all
of us. So some of those side effects to drugs
are real, but it is a small percentage of people
that experience them, and our clinicians would say over and
over again, it is absolutely worth it for many of
(11:00):
our patients to go down that path because for many
of them they don't experience side effects, and for some
of them the side effects are more minimal. But that's
a conversation, of course, that has to happen between patient
and clinician. And I think the whole clinical community has
gotten so much more sophisticated understanding the impact that these
(11:22):
drugs have, both positive and negative.
Speaker 2 (11:24):
A number of years ago, I read about a possible
treatment that well, people frankly laugh at it's a crap pill.
It's using right, the feses of a very someone with
a very healthy gut turning that into a pill and
(11:48):
then treating these very unhealthy guts. Where are we in
that process? Where are we with that?
Speaker 3 (11:56):
It's a good question the you know, the the CRNS
and client has found. We support a wide array of research.
We want to leave no stone unturned. We've invested five
hundred million dollars in research and have supported twenty five
hundred research projects, and we're really grateful that we've played
(12:18):
a critical role in the research that's led to every
drug that's on the market now. So we throw the
net wide. We want to explore lots of things, and
one of the things that we have invested money in
is understanding fecal transplantation to the point that you just made,
(12:38):
and really importantly understanding one's microbiome, so the bacteria, the viruses,
the fun guy that live inside your gut. We know
that that collection of bugs is having a really significant
(12:58):
impact on the disease, potentially the onset of it and
certainly the progression of it. So broadly speaking, we're investing
in a ton of stuff that is exploring altering the microbiome.
How do you alter it in a more sophisticated way,
frankly than swallowing a poop pill and just taking somebody
(13:19):
else's we think good poop putting it in your body.
So the field has come such a long way in
understanding the microbiome and figuring ways to alter it to
benefit our patients.
Speaker 2 (13:33):
People that are listening who might have questions or need
some help, how do they contact the Crones and Colitis Foundation.
Speaker 3 (13:41):
I appreciate that, I would say in all modesty, we
have a phenomenal website, so people should certainly start there.
It's Cronescalitisfoundation dot org. And please follow us on social media.
We're using social media to help continue to educate people,
(14:03):
but start with our website. Explore what is important to you,
whether you're a patient or a caregiver or a healthcare professional,
whether you're newly diagnosed or just have questions about symptoms.
You can follow the appropriate path on our website and
gather a lot of information. We also have an IBD
help Center, and you know we will take inquiries by email,
(14:28):
through Facebook or making a phone call and for free
help answer some of your questions. So those are two
good ways to start.
Speaker 2 (14:38):
Well, I thank you so much, Michael.
Speaker 1 (14:40):
Also, you've been listening to Sunstein sessions on iHeartRadio. A
production of New York's classic rock Q one O four
point three
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