October 15, 2024 • 37 mins
At 18, Jose faced a whirlwind of hospital visits, severe abdominal pain, and debilitating fatigue. Having already given up his dream of becoming a professional boxer and now risking his education, Jose was desperate for answers. At his lowest point, the fighter in him emerged, pushing him and his mom to seek solutions before the unknown illness could take even more from his life.
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Speaker 1 (00:04):
Really, my condition was continuously dropping. None of the treatment
was working. It got to the point where I was
actually that to give me nutrition through a tube.
Speaker 2 (00:21):
It was hard because obviously anyone knows that if you
see blood, it's not a good thing at all, and
it's not something that's I don't think it's going to
go away.
Speaker 3 (00:31):
The fear continues to fester. It just becomes a potential
really dark spiral for some patients.
Speaker 1 (00:38):
I think my lowest point was having that sinking feeling
of my life is never going to be the same.
Speaker 4 (00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.
(01:11):
These are their stories. I'm Lauren Brite Pacheco, and this
is symptomatic. Jose Torres has always felt most at home
(01:34):
when he can express himself, whether it's through music, poetry,
or visual arts.
Speaker 1 (01:41):
Ever since I was kid, I used to always draw
like cartoons, and as I grew up, continued sketching actually
went to middle school for art specifically.
Speaker 4 (01:49):
Though Jose was raised by his grandparents throughout his childhood,
his mother, Araceli, was always a huge part of a
support system. What kind of qualities does he have make
him so special?
Speaker 2 (02:01):
He's intelligent, he's sensitive, he's hard working, he doesn't settle.
He's a very strong person. A lot of people grow
fond of him really quickly. He's very social, unlike me,
I'm the opposite of him. But he likes to be
around people and he likes to help people as well.
Speaker 4 (02:23):
So tell me philosophy, poetry, reading, music, fan artist. How
did you get into boxing?
Speaker 1 (02:31):
I had a bit of a rough upbringing, so that
was a way my mother identified was just like, let's
put that energy to something productive. Boxing was also a
huge sport just in the home, Like my grandfather growing
up would always watch like the big fights and whatnot.
So I was like, yeah, sure, why not? So we
found a gym. I went, had a quick like intro session,
(02:52):
loved it, and that was it. If I wasn't in school,
I was likely in the gym.
Speaker 4 (02:57):
And by the time you were a freshman and you
were really into boxing.
Speaker 1 (03:02):
Yes, at that point, the idea was my trainer wanted
to start preparing me to compete in potentially the Golden
Gloves tournament to see how I.
Speaker 4 (03:10):
Placed there, And at that point, no pun intended, but
you ended up getting knocked out in terms of health.
You know, I was saying, your mom must be tough,
but I should think to a certain extent, seeing you
box prepared her for what you were about to battle
in terms of your health.
Speaker 1 (03:29):
My mom's a tough woman, but nothing prepared us for
that for the bout that came about with my health,
because yeah, it came out of nowhere.
Speaker 5 (03:40):
It was just a regular day.
Speaker 1 (03:42):
I probably just gotten back from college courses and I
went to use the restroom and there was blood.
Speaker 5 (03:49):
So that was the first thing. I was like, Oh,
that's different.
Speaker 1 (03:52):
But I didn't tell anyone because I just figured, oh,
it's stomach bug, maybe it's something I ate.
Speaker 5 (03:58):
It'll go away. I just figure it would pass and
it wasn't a big deal.
Speaker 4 (04:02):
So initially you just kind of dismissed it as a fluke. Yeah,
and then when did it next to get on your
radar as an issue?
Speaker 1 (04:12):
So then the blood continued, not frequently enough for me
to be alarmed, which sounds crazy, but it still occurred
a few times in the weeks coming up. But then
I started feeling intense cramping and abdominal pains. But even
that I kind of just shuk it off. Still didn't
say anything to anyone. And part of that is honestly
(04:34):
like a cultural thing, like within Latin households, we don't
like going to the doctor typically unless it's absolutely necessary.
Speaker 5 (04:41):
We were like, oh, it'll.
Speaker 1 (04:42):
Go away, it'll be fine, and just growing up, even
like a tail and all, like, we wouldn't take that
unless it was absolutely necessary. Like we were just you know,
natural ways to get rid of fevers and whatnot.
Speaker 5 (04:52):
So I just didn't mention it.
Speaker 4 (04:54):
What is your day to day like at this point,
is it impacting you commuting your classes?
Speaker 5 (05:03):
Yeah, one hundred percent.
Speaker 1 (05:04):
I was not able to make it to class half
the time because at this point also what started to
manifest was restroom urgency. Frankly so even taking the train,
because you know, I lived in Brooklyn, my school was
in Manhattan. I was also working part time at the
time as well, so it's just I couldn't make it
to everything. On top of training, I became tired to
(05:24):
even go to the gym. To train and box anymore.
Speaker 4 (05:27):
You know, I just want to focus on that because psychologically,
that transition into fear that you need to use the
restroom into an absolute necessity.
Speaker 2 (05:40):
It's what the.
Speaker 4 (05:42):
Normal person experiences, but on volume ten. So it's like
getting food poisoning out of the blue, and particularly in
New York City subways, there are no restrooms.
Speaker 5 (05:56):
Right.
Speaker 1 (05:56):
It was definitely a challenge that prohibited me, to your point,
to go anywhere, Like you had to be aware of
how long is it going to take me, you know,
where would the restrooms be.
Speaker 5 (06:06):
But beyond the restroom.
Speaker 1 (06:07):
Issue, just the fatigue, the depleted energy, the pain, like
there's so many other things that went along with that
that caused me to not be able to do a
lot of things.
Speaker 2 (06:18):
When he was in school, I wasn't around, So I
can only imagine how hard it was for him to
know that he may have to go and have to
get off the train or have to rush and it's
kind of also embarrassing. I'm sure for him.
Speaker 4 (06:36):
It's not something that people can necessarily say, it's not
something that people can necessarily understand, and it's a difficult
thing to talk about.
Speaker 1 (06:46):
Yeah, I mean, no one likes talking about restroom issues, right,
it's almost still taboo. So when someone is experiencing especially,
we don't know what it is. We don't know what's
happening or having these experiences. It was very difficult to
communicate due to lack of understanding, and to your point,
like it's difficult to share beyond the urgency. Even if
I do decide to go somewhere and I get stricken
(07:07):
with a crippling cramp or abdominal pain, then I would
have to like go crow up in a corner somewhere.
Speaker 4 (07:14):
Persisting for months on end, the symptoms became impossible to ignore,
starting to interfere with Jose's life, especially his boxing dreams.
Instead of focusing on his next training session, he was
now just trying to make it to class. It reached
a point where he could no longer hide it from
his mom.
Speaker 1 (07:35):
And then it got to the point where then fatigue
started to kick in.
Speaker 5 (07:39):
Fatigue isn't just being tired.
Speaker 1 (07:41):
When I say fatigue, I mean like you literally don't
have the energy to get out of bed. It's almost
difficult to explain if you've never experienced it. Just imagine
if your body was completely drained of any energy or
will to move, like we can't move if we wanted to,
And I was just so exhausted that my mom took notice.
(08:01):
There was just one day that I just couldn't get up,
like I couldn't make it. It's a class that day,
and then my mom was just like, there's something wrong,
like what's going on with you?
Speaker 5 (08:09):
So then Nan I finally broke and told her.
Speaker 1 (08:11):
And she was like, yeah, we need to get you
checked because I've never seen you like this before.
Speaker 2 (08:16):
He called me over and he was bleeding severely, and
that's when we rushed to the hospital.
Speaker 4 (08:24):
Tell me what went through your mind. How horrifying was that?
Speaker 2 (08:28):
It was hard because I know that obviously anyone knows
that if you see blood, it's not a good thing
at all. I don't think it's going to go away,
so I kind of knew that it was really serious.
Speaker 4 (08:45):
At the hospital, doctors drew blood, performed a colonoscopy, a
procedure where a fiber optic instrument is inserted to examine
the inside of the colon, and administered a barium swallow test,
where Jose ingested a chalk liquid that made his upper
gastrointestinal tract visible on X rays. There were so many
(09:06):
other procedures that they all started to blur together. For
Jose and as a boxer, I'm sure that you were
pretty aware of your weight and your body composition. What's
happening to you physically?
Speaker 1 (09:18):
I'm just getting weaker again, not being able to train
as regularly or at all. You know, it got to
a point where I was so fatigued the end that
I had to stop training altogether. So it was very
difficult for me to maintain weight on top of not
being able to exercise, which you know, just added to
the fatigue. It just became a cycle of one thing
compounding on the other, compounding on the other.
Speaker 2 (09:39):
He was getting skinnier and skinnier and skinnier and skinnier,
and it was very difficult.
Speaker 4 (09:45):
That must have been so frightening. What is the doctor
saying and what does the doctor think it is?
Speaker 1 (09:54):
So they told me that was Crohn's disease, which you know, durable.
So getting hit with that at that age, it was
just instantly like, oh what now, Like what is my
life going to look like? What does this mean for me?
I'm still so young, Like, what is the rest of
my life going to look like?
Speaker 4 (10:11):
Crohn's disease is a chronic condition that causes inflammation in
the digestive tract, leading to abdominal pain, severe diarrhea, fatigue,
weight loss, and malnutrition. If left unchecked, it can result
in debilitating and potentially life threatening complications.
Speaker 2 (10:30):
I started reading about chrones, and I read that it
could be deadly, it could be just life long. I
had no idea that they would say, oh, your son
has a disease and he's going to have issues. It's
going to change his life.
Speaker 4 (10:45):
Do you remember at that point what your biggest fears were.
Speaker 5 (10:51):
It went back to, like, what is my life going
to look like now?
Speaker 1 (10:54):
I was still going to school, but struggling because of
you know, all the symptoms and everything, and being in
and out the hospital and not the doctor's offices.
Speaker 5 (11:02):
So yeah, it was really my future more than anything.
Speaker 4 (11:09):
Jose had been in and out of the hospital five
times in just a few months. During that period, he
lost thirty pounds, drastically changing his appearance and overall well being.
Even though he now had a diagnosis, the lack of
a clear treatment plan left him feeling like he was
just treading water.
Speaker 1 (11:29):
They told me to keep a food diary and was
just like, if you eat something that makes you not
feel well, don't need it again. And in my head
that just didn't make any sense.
Speaker 4 (11:41):
Now, on top of fearing urgency, you have to fear
everything you're eating.
Speaker 1 (11:48):
Pretty much, because yeah, there was no guidance, And in
my head, it was just like, all right, I'm write
down what I eat in a day, and if I
don't feel well, hey, how do I pinpoint what is
it that I ate that made me feel bad or
land me back in the hospital? And again like what
was the long term solution? I'd been prescribed to regimen
of medications as well at that time. It got slightly better,
(12:08):
but not not manageable.
Speaker 4 (12:11):
So you have a diagnosis, it is not an optimistic one.
How do your conditions continue at that point? Is there
any kind of respite?
Speaker 1 (12:23):
There was a slight break, so like the frequency reduced
a little bit, the urgency reduced a little bit, but
there was still the fatigue. There was still the issue
of what do I eat because I was still regularly
going back to the doctor or the hospital because of
severe symptoms.
Speaker 2 (12:40):
So we had to do completely different no skins, you know, blend,
no seasonings, baked chicken, no fried foods at all, vegetables.
It just had to be like a very soft food diet,
nothing cruciferous, nothing that would hurt his stomach, so that
(13:00):
at least we wouldn't have any flares.
Speaker 4 (13:03):
And that's a huge undertaking because suddenly you're having to
second guess and think about everything that's going into his mouth.
Speaker 2 (13:13):
Yeah, it wasn't what I want to eat, it's what
I have to eat.
Speaker 4 (13:18):
The diagnosis offered only a guise of normalcy, a brief
flashback to life before the symptoms began.
Speaker 5 (13:25):
But as the.
Speaker 4 (13:25):
Flare ups returned and grew more frequent, Jose and Rselly
knew they needed to push for a second opinion.
Speaker 2 (13:32):
As a mom with a child that has a diagnosis
as severe as that, I didn't want just one opinion.
I wanted a second opinion. I found a center that
was specifically for pediatric gesture enterology, and we made an
appointment and.
Speaker 1 (13:50):
They re ran all the tests and did the blood
work all over again, and they actually came back with
a different diagnosis of all sort of colitis.
Speaker 4 (14:01):
So what was that like for you? Somewhat relief?
Speaker 1 (14:07):
It was because when I shared what I was being
told from my previous doctors. The current doctors that had
found that did give me the proper diagnosis and whatnot,
were also in disagreement with like the food diary thing,
and they were just like they should have done XYZ.
And so that gave me confidence in this medical team
(14:29):
that Okay, this is the team I can trust, and
let's see what happens here. And they did prescribe me
a regiment of medications that actually did work, at least
for a time.
Speaker 4 (14:40):
Altered of colitis is a disease that causes severe inflammation
and ulcers in the large intestine. In most people. Symptoms
develop gradually, but they can be draining and even life
threatening if not properly treated. It's estimated that nearly seven
hundred and fifty thousand people in North America are affected
by disease. Both Crohn's disease and alsortive colitis fall under
(15:04):
the umbrella of inflammatory bowel disease. Jose's current gastrentrologist, doctor
Brian Bosworth, explains the difference between the two.
Speaker 3 (15:15):
Inflammatory bowel diseases are a spectrum of presentations of an
autoimmune attack by your white blood cells on your intestines
and when that goes awry, that can lead to more
white blood cells coming in, more destruction of tissue. And
in the case of all sort of colitis, it's really
the surface level of the colon, and so some symptoms
(15:36):
that patients would get would be bleeding, diarrhea, urgency that
they have to run to the bathroom right away if
they felt the urge to go because they were afraid
that they would have an accident or not be able
to control it. If that inflammation is not just at
the surface level on the inside of the bowl, but
actually is throughout the entire wall of the bowl, that's
(15:58):
more Crone's disease. It's what we call transmural through the wall,
and that can have the same types of symptoms and presentation,
but it could also have other complications.
Speaker 4 (16:08):
So both would be diagnosed through a colonoscopy.
Speaker 3 (16:14):
Cronesses and ulcer of colitis are clinical diagnoses, and it's
a combination of the endoscopic view through a colonoscopy, the
pathologic presentation, what it looks like when we take little
biopsies in the colon, the way that the cells are arranged,
or even the types of cells, the imaging. So radiology
studies MRIs or cat scans. In Jose's case, he also
(16:35):
had a pill camera where he swallowed a little pill
that took pictures all the way through his intestines.
Speaker 4 (16:44):
That's so much for you to experience at such a
young age.
Speaker 1 (16:48):
Yeah, I think my lowest point was when the doctor
told me what they thought it was at that time,
and then just instantly having that sinking feeling of my
life is never going to be the same. You mentioned
my mother earlier, like watching me box was nothing compared
to her watching me go through this and helping me
get through it and just see me continuously not get
(17:08):
better and get worse over time.
Speaker 5 (17:10):
And yeah, it was difficult.
Speaker 4 (17:13):
In terms of the mental challenges that go hand in
hand with IBD, particularly severe cases of all sort of colitis.
How as a gastroentrologists do you help patients navigate the
mental aspect because there's a great deal of shame and
(17:34):
secrecy and guilt and frustration and hopelessness wrapped in one.
Speaker 5 (17:40):
You're so right.
Speaker 3 (17:41):
When they've done studies looking at quality of life, patients
with crohnes and ulcrapplities have a lower quality of life
index than cancer patients do.
Speaker 4 (17:51):
Wow, that's unbelievable.
Speaker 3 (17:53):
And part of that is, just like you said, there's
a shame aspected to it. It's not anything that they
brought on on themselves, obviously, but what's the primary presenting
problem while it's running to the bathroom? And that can
be embarrassing in that perhaps there are certain foods that
you eat that tend to set you off, or if
there are other circumstances and you're going through a flare
to have to run to a bathroom and you feel
(18:15):
chained to your house right, you're afraid to leave. And
on the mental health side, we also find that it's
critically important to work with mental health professionals. So here
at the NYU Lengo and plumat for a Bill Disease Center,
we employ a full time psychologist who sees all of
our patients who need to see her, and it's been
(18:35):
so impactful to have that partnership.
Speaker 4 (18:39):
Jose starts to grasp the reality of living with a
chronic disease for the rest of his life. While an
accurate diagnosis offers a path forward from misdiagnosis. That hope
is quickly dashed when a life threatening flare up sends
him to ther.
Speaker 2 (18:55):
He wasn't getting better, and I thought I was going
to lose him.
Speaker 4 (19:02):
We'll be right back with Symptomatic, a Medical Mystery Podcast.
Now back to Symptomatic, a medical Mystery Podcast. Jose Torres,
not even twenty one, had been on a roller coaster
of hospital visits for months on end. He had to
(19:24):
abandon his boxing dreams and was now struggling to keep
up with his college courses, often unable to leave his
home due to the pain, fatigue, and constant bathroom urgency.
Although he was confident in the new diagnosis a whole
sort of colitis, long term relief felt out of reach.
(19:49):
So does life go back to normal for a period
of time at this point?
Speaker 5 (19:54):
For a period of time, for about a year, they
did prescribe me a regiment of medications that actually did work,
but only for that short time.
Speaker 1 (20:03):
Unfortunately, there was still anxiety around urgency. There was still
days where I would feel fatigued. It wasn't remission, it
was disease management. So it was about as normal as
it could have been. I was able to go to
school and do what I had to do for my classes.
I was able to, you know, spend some time with friends,
(20:25):
but there was still that anxiety part of it, the
possibility and kind of those thoughts in the back of
my head, and frankly, symptoms would arise when I would
least expect it. So manageable, but yeah, still not what
it was prior to the diagnosis.
Speaker 4 (20:39):
Were you in denial initially when things came back full force,
that first huge flare after a year of having had
things settle down, Were you hoping it was just like
a temporary blip.
Speaker 5 (20:52):
Yeah.
Speaker 1 (20:53):
I could compare it to the mindset I had when
I first had symptoms. I was just like, I'm just
going to be feeling like this today, or I'm just
gonna be feeling like this this week. And then the
week turned into two weeks and it was like, nope,
it's here.
Speaker 5 (21:06):
We go again.
Speaker 4 (21:07):
And then what happened?
Speaker 1 (21:09):
Then I flared, So all of the symptoms came back
full force, the fatigue, the blood, the pain. They had
tried in other kind of regiment of medications. They had
tried to increase hostages and nothing worked this time. So
it got to the point where I was I was
hospitalized for a good portion of time and actually had
(21:32):
to take a semester off of school because I was
missing so much of it.
Speaker 4 (21:37):
That's so much Jose, Yeah, you must have just felt
so overwhelmed with having to just fight through every day.
Speaker 1 (21:49):
Yeah, it was difficult because at the worst I was
just long term admitted to the hospital and my condition
was continuously dropping.
Speaker 5 (21:59):
None of the treatment was working.
Speaker 1 (22:02):
I dropped down to round one hundred pounds.
Speaker 2 (22:08):
So we went into a lot of problems. He was
not keeping food down. They had to put a food
tube in him, which in itself was very, very scary
and difficult to make a decision, but there's no other choice.
So I pretty much lived in the hospital with him
for a whole month, and that was very hard.
Speaker 1 (22:32):
It was quite a battle, and yeah, I was pretty
much experiencing everything he could possibly experience associated with colliitus.
Speaker 4 (22:39):
At that point, after everything you had been through too,
and he had been through, that just must have been
like how much more can you two take?
Speaker 2 (22:50):
It was very hard, but you can't give up, right,
You have to keep going. There has to be some
kind of bright light at the end of all of this.
Speaker 4 (22:59):
It must have been like an may or that you
felt you couldn't wake up from.
Speaker 2 (23:03):
It was you don't want anyone to have to go
through that with a child, and like I said, the
weight loss was scaring me and I felt like I
was losing him.
Speaker 4 (23:14):
Were you afraid for sure?
Speaker 1 (23:16):
Because I was again at one hundred pounds with that
with everything going on, like it came back to that.
Speaker 5 (23:21):
Question of what now, like what could potentially happen here?
Speaker 4 (23:25):
I say, how long were you in the hospital?
Speaker 5 (23:27):
It was in and out a couple of months.
Speaker 1 (23:30):
And then the doctors came to me and they were like,
to be Frank, there's two options here. There's this due
form of medication that's out that we can see if
that works after a couple of infusions or their surgery.
Speaker 4 (23:44):
And by surgery, it means to take a huge chunk
of your intestines.
Speaker 1 (23:49):
The entire large intestine, the entire large intestine out. So
again at nineteen, me and my mom were sitting there,
you know, having to make the decision, and you know,
we're like, let's shot the medication because we're not going
to opt into such a major surgery.
Speaker 5 (24:04):
So we did, and that didn't work.
Speaker 4 (24:07):
I'm sure your mother is trying to be your biggest
support system at that point, but were you ever worried
about her? Did you then kind of make that the
guilt of being sick when you see how it impacts
someone else is sometimes overwhelming.
Speaker 5 (24:31):
Yeah, one hundred percent.
Speaker 1 (24:32):
I mean, she took time off of work, could the
nights at a stay in the hospital.
Speaker 5 (24:35):
She was there with me, even if she had a
sleep on a chair.
Speaker 1 (24:38):
She was there throughout that entire time, and even to
this day sometimes I think about it because you know,
my mom was always a very strong woman, but after
this diagnosis, she became very anxious. So I always think
back to myself, like, I wonder was it because of
my diagnosi that she got that way?
Speaker 5 (24:54):
So, yeah, it definitely took a toll.
Speaker 4 (24:57):
What did her being there for you mean to.
Speaker 1 (25:00):
It meant the world because growing up I was raised
by my grandparents because my mother had me very young,
so she was as present as she could be. But
it wasn't until I moved in with her when I
started high school that we really started to build a relationship.
But it was during this period where I couldn't thank
her and appreciate her enough for just her being there
(25:22):
at the time where I frankly needed somebody the most,
and she was there.
Speaker 4 (25:26):
Desperate to avoid major surgery and the risk of irreparable
damage to his intestines. Jose began a series of infusions
to reduce the kalita symptoms and hopefully improve his quality
of life.
Speaker 1 (25:39):
I believe it was either two or three rounds of
infusion over a period of a few weeks and nothing improved.
Speaker 5 (25:46):
So now now we had to do the surgery.
Speaker 4 (25:49):
Surgery is not even a choice, it's a necessity to
save your life. Yeah, all right, walk me through the surgery.
Speaker 5 (25:59):
Yeah.
Speaker 1 (25:59):
The first surgery was a total collectomy, so again, removal
of the entire large intestine. I'd been told going in,
you're going to have an ostheme bag for a time,
possibly forever, but at least the idea was for it
to be for a time.
Speaker 4 (26:14):
The collectomy was the first and what would be a
three part surgery sequence, creating an external bag to collect
bodily waste. Doctor Bosworth took over Jose's care after his
first surgery, and from the beginning they established a relationship
built on trust, the basis of what would become a
lifelong partnership.
Speaker 3 (26:38):
Most patients when they have the jpouch surgery beforehand are
apprehensive and really fearful that they're going to be left
with a permanent bag and having completed his surgeries. That
was one of the things that he was concerned about.
Am I going to have to have another surgery and
then be left forever having a bag outside? And how
(26:58):
is that going to impact his life?
Speaker 1 (27:03):
I remember just feeling relief because doctor Bosworth, even at
that time, was extremely well regarded in the space.
Speaker 4 (27:11):
Do you remember meeting jose and his mother for the
first time?
Speaker 5 (27:15):
Very well.
Speaker 3 (27:16):
He now he comes to appointments without his mother from president,
but the very beginning she was right there by his
side every step of the way. And when we first met,
we talked through what his course beforehands had been, and
what the decision to actually undergo surgery was and what
that meant for somebody who was eighteen nineteen twenty years old,
(27:36):
and how I was going to help both of them
together go forward and what that meant for them as
they continued on with him having the EJ Pouch.
Speaker 1 (27:46):
The confidence in which that he spoke, and even his
rapport and bedsign manner like, he was just very comforting.
It was almost like talking to a friend, if you will.
Didn't feel like I was talking to a doctor. He
was is very approachable.
Speaker 3 (28:03):
One of the things that I think is really important
in working with patients and their families. And a goal
is that patients with chronic diseases are going to have
chronic diseases, but it shouldn't be who they are, and
it shouldn't control their lives. And being able to help
to restore some degree of control, some individuality, and some
(28:26):
ability to function. Knowing that you have this but it's
not dictating what you're doing is a challenge. And working
with both Jose and his mom together both to get
past some of the anxieties of the therapies that he'd
had in the past, what the future might hold, treat
any flares that might occur, but also give them hope.
(28:47):
And I think that hope is such an important concept
when you're talking about a chronic disease.
Speaker 4 (28:56):
The first surgery to remove Jose's large intestine was a success,
but the doctor still needed to perform a few additional
procedures to ensure he was set up for long term
recovery and comfort.
Speaker 1 (29:09):
I had pretty much every post surgical complication you could
possibly have just because of the health state I was in.
They started to slowly introduce foods and I was regularly
having blockages with the ostomy, so they actually had to
do another minor surgery not too long after the major one,
to increase the size of the ostomy to allow things
(29:30):
to kind of like pass through better.
Speaker 3 (29:32):
Fairly shortly after surgery, he came in and was having
some bleeding. And when you're patient with lcercalitis who was
diagnosed because you were bleeding, it evokes so much And
I'm going to say it, even though it wasn't form,
I know it's post traumatic stress disorder, right. You really
have that PTSD reaction when you see something that reminds
(29:52):
you of a place when you were so sick and
there was nothing that was happening. There's a lot of
both anxiety that occurs and real fear of what's to come.
Because if you've now already had surgery, what's the next step.
How could I have more surgery? But Colon's gone, but
yet I'm still bleeding. And so we did a pouch
asibly we looked in infect His pouch did not have
(30:13):
any inflammation.
Speaker 4 (30:15):
The next step for Jose was surgery to remove the
rectum and create a J pouch, preparing him for a
third procedure that would eliminate the need for an external
bag for his digestive system to function.
Speaker 5 (30:27):
That third surgery was success.
Speaker 1 (30:29):
They were able to reverse the ostomy and the jpouch
surgery and that three part sequence had been completed. But
it was just such a relief to know that the
ostemy had been reversed and now there could be a
potential way forward for me to move on with my life. Frankly,
it just made me appreciate everything so much more, even food,
because you know, going through this recovery period of eating
(30:52):
plan things or liquid diets and whatnot. Literally, just the
little things I learned to appreciate in value more. Yeah,
it's just completely shifted my perspective.
Speaker 4 (31:03):
Well, that is such a lovely way to look at things,
after everything you've been through, pulling the positives from it.
After enduring numerous complications and finally undergoing the successful three
part surgery, Jose's treatment has now shifted to symptom maintenance.
This consists of regular checkups to monitor his inflammation and
(31:26):
ensure everything remains under control. Having navigated the terrifying road
to relief, he is now determined to be an example
to others living with IBD. He currently works at the
Crones and Kalidis Foundation, having started there as an intern
and worked his way up.
Speaker 1 (31:43):
There's a camp program for children that have closes these
and alsative colitis that the foundation runs.
Speaker 5 (31:50):
So I did that and that changed my life.
Speaker 1 (31:53):
Again, just going to a camp and seeing these kids
who were the youngest were around six seven, oldest being
you know, seventeen, and these kids dealing with what I
just went through, and it's just like, geez, some of
these kids have ostomies that are not going to be reversed.
Some of these kids are on medications that they're never
(32:13):
going to get off of, and just to see them
enjoy that week of camp as if they were normal kids.
Speaker 5 (32:20):
But it's just kids being kids at the end of
the day.
Speaker 1 (32:22):
And the kids are always so grateful to the counselors there,
but you know, amongst us, counselors were always like, the
kids don't know the effect they have on us. Again,
you just see life in a different way, like if
these kids are doing it, and then why can't I.
I'm sure they look at us and reverse like, oh
they're older, they're living with what I have, they're successful,
then I can do it too. So it was just
such a powerful experience. I volunteered as a counselor for
(32:43):
ten years.
Speaker 4 (32:47):
You must be so proud of how he's blossomed in
spite of all of this.
Speaker 2 (32:54):
Yeah, he's so strong. I don't even think I would
be able to do what he did. I don't think
I would have the strength and the positiveness that he has.
He wanted to share with the kids, he wanted to
see them. He went for years just trying to see
how they progressed and trying to share his story and
tell them that they're going to be okay. And he's
(33:17):
a really strong person.
Speaker 4 (33:18):
So if your health struggles depleted you after getting diagnosed,
involving yourself in that community was what replenished you.
Speaker 5 (33:29):
Percent.
Speaker 1 (33:29):
It gave me a community. It gave me friends that
I still have to this day that again could just
really understand everything because they're going through it themselves or
have been through it themselves. I've been with the Content
Clientist Foundation as a full time employee for the better
part of the last eight years now, which I'm again
just extremely extremely grateful for so so many pieces Like
(33:50):
I look back on it and it was one of
the worst things that have ever happened to me. Ended
up being such a blessing because it's created the career
that I have that allows me to myself and live
the life that I want to live and help my
family however I can help them and be there, So
I honestly don't know what my life would look like
today if it wasn't for all of those experiences occurring
(34:12):
the way they happened.
Speaker 3 (34:14):
His ability to give hope, his ability to counsel and
celebrate the wins for other patients, be able to look
back and reflect and.
Speaker 4 (34:22):
One what he's doing.
Speaker 3 (34:24):
It's just incredible, and I'm so proud of the work
that he's doing, and he knows he's making an impact,
and I know he's making a real impact both in
other patients and for himself too.
Speaker 4 (34:35):
In what ways do you think watching him box did
help you?
Speaker 2 (34:40):
That's a tough question. I guess the boxing, I'm worried
that he's going to get hurt. You're right, but you
can stop it. But with the disease, you can't stop it.
You can't run away from it. You just have to
cope with it and be strong and just go on
with it.
Speaker 4 (35:00):
What do you want people listening to take from your story?
Speaker 5 (35:03):
Always have faith, and hope.
Speaker 1 (35:07):
This is going to sound super cliche, but an attitude
of gratitude goes a really long way to just really
be grateful for what you have and even if you're
in a bad situation, do the best you can to
learn and look for help and resources and support, like
never be too proud to do that, and just do
what you can and.
Speaker 5 (35:25):
Just never give up.
Speaker 1 (35:26):
Hope there could be a way where you could change
your situation.
Speaker 4 (35:32):
You can find out more about both Crones and Colidis
at the Crones and Colidis Foundation website at Cronescalidisfoundation dot org,
where you might also come across some of Jose's work.
Speaker 5 (35:48):
My name is Jose Tares.
Speaker 1 (35:49):
It took me about a year to get my proper
diagnosis of all short of colitis and three surgeries later
in over a decade. Now I'm fortunate enough to have
no symptoms and be living a normal life.
Speaker 4 (36:05):
On next week's episode of Symptomatic, Kelly du Bois is
suddenly confronted with severe heartburn, rapid weight gain, and appealing scalp,
leading her on a confusing path that even led to
brain surgery.
Speaker 6 (36:19):
I looked up and I saw my neurosurgeon and he's
asking me the questions like you see on TV when
you know something really bad happen? Do you know your name?
Do you know what year it is? And do you
know who's the president? And I've struggled to speak.
Speaker 4 (36:36):
But when brain surgery leaves her with irreparable damage and
without much relief, she becomes desperate for answers to what
really is going on. As always, we would love to
hear from you. Send us your thoughts on this episode
or share a medical mystery of your own at Symptomatic
(36:57):
at iHeartMedia dot com. Please rate and review Symptomatic wherever
you get your podcasts. We'll see you next time. Until then,
be well. Symptomatic is a production of Ruby Studio from iHeartMedia.
Our show is hosted by me Lauren Bret Pacheco. Executive
producers are Matt Romano and myself. Our EP of Post
(37:18):
Production is James Foster. Our supervising producer is Cierra Kaiser.
Our writers are John Irwin and Diana Davis, and our
editor is Sierra Spreen
Really, my condition was continuously dropping. None of the treatment
was working. It got to the point where I was
actually that to give me nutrition through a tube.
Speaker 2 (00:21):
It was hard because obviously anyone knows that if you
see blood, it's not a good thing at all, and
it's not something that's I don't think it's going to
go away.
Speaker 3 (00:31):
The fear continues to fester. It just becomes a potential
really dark spiral for some patients.
Speaker 1 (00:38):
I think my lowest point was having that sinking feeling
of my life is never going to be the same.
Speaker 4 (00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.
(01:11):
These are their stories. I'm Lauren Brite Pacheco, and this
is symptomatic. Jose Torres has always felt most at home
(01:34):
when he can express himself, whether it's through music, poetry,
or visual arts.
Speaker 1 (01:41):
Ever since I was kid, I used to always draw
like cartoons, and as I grew up, continued sketching actually
went to middle school for art specifically.
Speaker 4 (01:49):
Though Jose was raised by his grandparents throughout his childhood,
his mother, Araceli, was always a huge part of a
support system. What kind of qualities does he have make
him so special?
Speaker 2 (02:01):
He's intelligent, he's sensitive, he's hard working, he doesn't settle.
He's a very strong person. A lot of people grow
fond of him really quickly. He's very social, unlike me,
I'm the opposite of him. But he likes to be
around people and he likes to help people as well.
Speaker 4 (02:23):
So tell me philosophy, poetry, reading, music, fan artist. How
did you get into boxing?
Speaker 1 (02:31):
I had a bit of a rough upbringing, so that
was a way my mother identified was just like, let's
put that energy to something productive. Boxing was also a
huge sport just in the home, Like my grandfather growing
up would always watch like the big fights and whatnot.
So I was like, yeah, sure, why not? So we
found a gym. I went, had a quick like intro session,
(02:52):
loved it, and that was it. If I wasn't in school,
I was likely in the gym.
Speaker 4 (02:57):
And by the time you were a freshman and you
were really into boxing.
Speaker 1 (03:02):
Yes, at that point, the idea was my trainer wanted
to start preparing me to compete in potentially the Golden
Gloves tournament to see how I.
Speaker 4 (03:10):
Placed there, And at that point, no pun intended, but
you ended up getting knocked out in terms of health.
You know, I was saying, your mom must be tough,
but I should think to a certain extent, seeing you
box prepared her for what you were about to battle
in terms of your health.
Speaker 1 (03:29):
My mom's a tough woman, but nothing prepared us for
that for the bout that came about with my health,
because yeah, it came out of nowhere.
Speaker 5 (03:40):
It was just a regular day.
Speaker 1 (03:42):
I probably just gotten back from college courses and I
went to use the restroom and there was blood.
Speaker 5 (03:49):
So that was the first thing. I was like, Oh,
that's different.
Speaker 1 (03:52):
But I didn't tell anyone because I just figured, oh,
it's stomach bug, maybe it's something I ate.
Speaker 5 (03:58):
It'll go away. I just figure it would pass and
it wasn't a big deal.
Speaker 4 (04:02):
So initially you just kind of dismissed it as a fluke. Yeah,
and then when did it next to get on your
radar as an issue?
Speaker 1 (04:12):
So then the blood continued, not frequently enough for me
to be alarmed, which sounds crazy, but it still occurred
a few times in the weeks coming up. But then
I started feeling intense cramping and abdominal pains. But even
that I kind of just shuk it off. Still didn't
say anything to anyone. And part of that is honestly
(04:34):
like a cultural thing, like within Latin households, we don't
like going to the doctor typically unless it's absolutely necessary.
Speaker 5 (04:41):
We were like, oh, it'll.
Speaker 1 (04:42):
Go away, it'll be fine, and just growing up, even
like a tail and all, like, we wouldn't take that
unless it was absolutely necessary. Like we were just you know,
natural ways to get rid of fevers and whatnot.
Speaker 5 (04:52):
So I just didn't mention it.
Speaker 4 (04:54):
What is your day to day like at this point,
is it impacting you commuting your classes?
Speaker 5 (05:03):
Yeah, one hundred percent.
Speaker 1 (05:04):
I was not able to make it to class half
the time because at this point also what started to
manifest was restroom urgency. Frankly so even taking the train,
because you know, I lived in Brooklyn, my school was
in Manhattan. I was also working part time at the
time as well, so it's just I couldn't make it
to everything. On top of training, I became tired to
(05:24):
even go to the gym. To train and box anymore.
Speaker 4 (05:27):
You know, I just want to focus on that because psychologically,
that transition into fear that you need to use the
restroom into an absolute necessity.
Speaker 2 (05:40):
It's what the.
Speaker 4 (05:42):
Normal person experiences, but on volume ten. So it's like
getting food poisoning out of the blue, and particularly in
New York City subways, there are no restrooms.
Speaker 5 (05:56):
Right.
Speaker 1 (05:56):
It was definitely a challenge that prohibited me, to your point,
to go anywhere, Like you had to be aware of
how long is it going to take me, you know,
where would the restrooms be.
Speaker 5 (06:06):
But beyond the restroom.
Speaker 1 (06:07):
Issue, just the fatigue, the depleted energy, the pain, like
there's so many other things that went along with that
that caused me to not be able to do a
lot of things.
Speaker 2 (06:18):
When he was in school, I wasn't around, So I
can only imagine how hard it was for him to
know that he may have to go and have to
get off the train or have to rush and it's
kind of also embarrassing. I'm sure for him.
Speaker 4 (06:36):
It's not something that people can necessarily say, it's not
something that people can necessarily understand, and it's a difficult
thing to talk about.
Speaker 1 (06:46):
Yeah, I mean, no one likes talking about restroom issues, right,
it's almost still taboo. So when someone is experiencing especially,
we don't know what it is. We don't know what's
happening or having these experiences. It was very difficult to
communicate due to lack of understanding, and to your point,
like it's difficult to share beyond the urgency. Even if
I do decide to go somewhere and I get stricken
(07:07):
with a crippling cramp or abdominal pain, then I would
have to like go crow up in a corner somewhere.
Speaker 4 (07:14):
Persisting for months on end, the symptoms became impossible to ignore,
starting to interfere with Jose's life, especially his boxing dreams.
Instead of focusing on his next training session, he was
now just trying to make it to class. It reached
a point where he could no longer hide it from
his mom.
Speaker 1 (07:35):
And then it got to the point where then fatigue
started to kick in.
Speaker 5 (07:39):
Fatigue isn't just being tired.
Speaker 1 (07:41):
When I say fatigue, I mean like you literally don't
have the energy to get out of bed. It's almost
difficult to explain if you've never experienced it. Just imagine
if your body was completely drained of any energy or
will to move, like we can't move if we wanted to,
And I was just so exhausted that my mom took notice.
(08:01):
There was just one day that I just couldn't get up,
like I couldn't make it. It's a class that day,
and then my mom was just like, there's something wrong,
like what's going on with you?
Speaker 5 (08:09):
So then Nan I finally broke and told her.
Speaker 1 (08:11):
And she was like, yeah, we need to get you
checked because I've never seen you like this before.
Speaker 2 (08:16):
He called me over and he was bleeding severely, and
that's when we rushed to the hospital.
Speaker 4 (08:24):
Tell me what went through your mind. How horrifying was that?
Speaker 2 (08:28):
It was hard because I know that obviously anyone knows
that if you see blood, it's not a good thing
at all. I don't think it's going to go away,
so I kind of knew that it was really serious.
Speaker 4 (08:45):
At the hospital, doctors drew blood, performed a colonoscopy, a
procedure where a fiber optic instrument is inserted to examine
the inside of the colon, and administered a barium swallow test,
where Jose ingested a chalk liquid that made his upper
gastrointestinal tract visible on X rays. There were so many
(09:06):
other procedures that they all started to blur together. For
Jose and as a boxer, I'm sure that you were
pretty aware of your weight and your body composition. What's
happening to you physically?
Speaker 1 (09:18):
I'm just getting weaker again, not being able to train
as regularly or at all. You know, it got to
a point where I was so fatigued the end that
I had to stop training altogether. So it was very
difficult for me to maintain weight on top of not
being able to exercise, which you know, just added to
the fatigue. It just became a cycle of one thing
compounding on the other, compounding on the other.
Speaker 2 (09:39):
He was getting skinnier and skinnier and skinnier and skinnier,
and it was very difficult.
Speaker 4 (09:45):
That must have been so frightening. What is the doctor
saying and what does the doctor think it is?
Speaker 1 (09:54):
So they told me that was Crohn's disease, which you know, durable.
So getting hit with that at that age, it was
just instantly like, oh what now, Like what is my
life going to look like? What does this mean for me?
I'm still so young, Like, what is the rest of
my life going to look like?
Speaker 4 (10:11):
Crohn's disease is a chronic condition that causes inflammation in
the digestive tract, leading to abdominal pain, severe diarrhea, fatigue,
weight loss, and malnutrition. If left unchecked, it can result
in debilitating and potentially life threatening complications.
Speaker 2 (10:30):
I started reading about chrones, and I read that it
could be deadly, it could be just life long. I
had no idea that they would say, oh, your son
has a disease and he's going to have issues. It's
going to change his life.
Speaker 4 (10:45):
Do you remember at that point what your biggest fears were.
Speaker 5 (10:51):
It went back to, like, what is my life going
to look like now?
Speaker 1 (10:54):
I was still going to school, but struggling because of
you know, all the symptoms and everything, and being in
and out the hospital and not the doctor's offices.
Speaker 5 (11:02):
So yeah, it was really my future more than anything.
Speaker 4 (11:09):
Jose had been in and out of the hospital five
times in just a few months. During that period, he
lost thirty pounds, drastically changing his appearance and overall well being.
Even though he now had a diagnosis, the lack of
a clear treatment plan left him feeling like he was
just treading water.
Speaker 1 (11:29):
They told me to keep a food diary and was
just like, if you eat something that makes you not
feel well, don't need it again. And in my head
that just didn't make any sense.
Speaker 4 (11:41):
Now, on top of fearing urgency, you have to fear
everything you're eating.
Speaker 1 (11:48):
Pretty much, because yeah, there was no guidance, And in
my head, it was just like, all right, I'm write
down what I eat in a day, and if I
don't feel well, hey, how do I pinpoint what is
it that I ate that made me feel bad or
land me back in the hospital? And again like what
was the long term solution? I'd been prescribed to regimen
of medications as well at that time. It got slightly better,
(12:08):
but not not manageable.
Speaker 4 (12:11):
So you have a diagnosis, it is not an optimistic one.
How do your conditions continue at that point? Is there
any kind of respite?
Speaker 1 (12:23):
There was a slight break, so like the frequency reduced
a little bit, the urgency reduced a little bit, but
there was still the fatigue. There was still the issue
of what do I eat because I was still regularly
going back to the doctor or the hospital because of
severe symptoms.
Speaker 2 (12:40):
So we had to do completely different no skins, you know, blend,
no seasonings, baked chicken, no fried foods at all, vegetables.
It just had to be like a very soft food diet,
nothing cruciferous, nothing that would hurt his stomach, so that
(13:00):
at least we wouldn't have any flares.
Speaker 4 (13:03):
And that's a huge undertaking because suddenly you're having to
second guess and think about everything that's going into his mouth.
Speaker 2 (13:13):
Yeah, it wasn't what I want to eat, it's what
I have to eat.
Speaker 4 (13:18):
The diagnosis offered only a guise of normalcy, a brief
flashback to life before the symptoms began.
Speaker 5 (13:25):
But as the.
Speaker 4 (13:25):
Flare ups returned and grew more frequent, Jose and Rselly
knew they needed to push for a second opinion.
Speaker 2 (13:32):
As a mom with a child that has a diagnosis
as severe as that, I didn't want just one opinion.
I wanted a second opinion. I found a center that
was specifically for pediatric gesture enterology, and we made an
appointment and.
Speaker 1 (13:50):
They re ran all the tests and did the blood
work all over again, and they actually came back with
a different diagnosis of all sort of colitis.
Speaker 4 (14:01):
So what was that like for you? Somewhat relief?
Speaker 1 (14:07):
It was because when I shared what I was being
told from my previous doctors. The current doctors that had
found that did give me the proper diagnosis and whatnot,
were also in disagreement with like the food diary thing,
and they were just like they should have done XYZ.
And so that gave me confidence in this medical team
(14:29):
that Okay, this is the team I can trust, and
let's see what happens here. And they did prescribe me
a regiment of medications that actually did work, at least
for a time.
Speaker 4 (14:40):
Altered of colitis is a disease that causes severe inflammation
and ulcers in the large intestine. In most people. Symptoms
develop gradually, but they can be draining and even life
threatening if not properly treated. It's estimated that nearly seven
hundred and fifty thousand people in North America are affected
by disease. Both Crohn's disease and alsortive colitis fall under
(15:04):
the umbrella of inflammatory bowel disease. Jose's current gastrentrologist, doctor
Brian Bosworth, explains the difference between the two.
Speaker 3 (15:15):
Inflammatory bowel diseases are a spectrum of presentations of an
autoimmune attack by your white blood cells on your intestines
and when that goes awry, that can lead to more
white blood cells coming in, more destruction of tissue. And
in the case of all sort of colitis, it's really
the surface level of the colon, and so some symptoms
(15:36):
that patients would get would be bleeding, diarrhea, urgency that
they have to run to the bathroom right away if
they felt the urge to go because they were afraid
that they would have an accident or not be able
to control it. If that inflammation is not just at
the surface level on the inside of the bowl, but
actually is throughout the entire wall of the bowl, that's
(15:58):
more Crone's disease. It's what we call transmural through the wall,
and that can have the same types of symptoms and presentation,
but it could also have other complications.
Speaker 4 (16:08):
So both would be diagnosed through a colonoscopy.
Speaker 3 (16:14):
Cronesses and ulcer of colitis are clinical diagnoses, and it's
a combination of the endoscopic view through a colonoscopy, the
pathologic presentation, what it looks like when we take little
biopsies in the colon, the way that the cells are arranged,
or even the types of cells, the imaging. So radiology
studies MRIs or cat scans. In Jose's case, he also
(16:35):
had a pill camera where he swallowed a little pill
that took pictures all the way through his intestines.
Speaker 4 (16:44):
That's so much for you to experience at such a
young age.
Speaker 1 (16:48):
Yeah, I think my lowest point was when the doctor
told me what they thought it was at that time,
and then just instantly having that sinking feeling of my
life is never going to be the same. You mentioned
my mother earlier, like watching me box was nothing compared
to her watching me go through this and helping me
get through it and just see me continuously not get
(17:08):
better and get worse over time.
Speaker 5 (17:10):
And yeah, it was difficult.
Speaker 4 (17:13):
In terms of the mental challenges that go hand in
hand with IBD, particularly severe cases of all sort of colitis.
How as a gastroentrologists do you help patients navigate the
mental aspect because there's a great deal of shame and
(17:34):
secrecy and guilt and frustration and hopelessness wrapped in one.
Speaker 5 (17:40):
You're so right.
Speaker 3 (17:41):
When they've done studies looking at quality of life, patients
with crohnes and ulcrapplities have a lower quality of life
index than cancer patients do.
Speaker 4 (17:51):
Wow, that's unbelievable.
Speaker 3 (17:53):
And part of that is, just like you said, there's
a shame aspected to it. It's not anything that they
brought on on themselves, obviously, but what's the primary presenting
problem while it's running to the bathroom? And that can
be embarrassing in that perhaps there are certain foods that
you eat that tend to set you off, or if
there are other circumstances and you're going through a flare
to have to run to a bathroom and you feel
(18:15):
chained to your house right, you're afraid to leave. And
on the mental health side, we also find that it's
critically important to work with mental health professionals. So here
at the NYU Lengo and plumat for a Bill Disease Center,
we employ a full time psychologist who sees all of
our patients who need to see her, and it's been
(18:35):
so impactful to have that partnership.
Speaker 4 (18:39):
Jose starts to grasp the reality of living with a
chronic disease for the rest of his life. While an
accurate diagnosis offers a path forward from misdiagnosis. That hope
is quickly dashed when a life threatening flare up sends
him to ther.
Speaker 2 (18:55):
He wasn't getting better, and I thought I was going
to lose him.
Speaker 4 (19:02):
We'll be right back with Symptomatic, a Medical Mystery Podcast.
Now back to Symptomatic, a medical Mystery Podcast. Jose Torres,
not even twenty one, had been on a roller coaster
of hospital visits for months on end. He had to
(19:24):
abandon his boxing dreams and was now struggling to keep
up with his college courses, often unable to leave his
home due to the pain, fatigue, and constant bathroom urgency.
Although he was confident in the new diagnosis a whole
sort of colitis, long term relief felt out of reach.
(19:49):
So does life go back to normal for a period
of time at this point?
Speaker 5 (19:54):
For a period of time, for about a year, they
did prescribe me a regiment of medications that actually did work,
but only for that short time.
Speaker 1 (20:03):
Unfortunately, there was still anxiety around urgency. There was still
days where I would feel fatigued. It wasn't remission, it
was disease management. So it was about as normal as
it could have been. I was able to go to
school and do what I had to do for my classes.
I was able to, you know, spend some time with friends,
(20:25):
but there was still that anxiety part of it, the
possibility and kind of those thoughts in the back of
my head, and frankly, symptoms would arise when I would
least expect it. So manageable, but yeah, still not what
it was prior to the diagnosis.
Speaker 4 (20:39):
Were you in denial initially when things came back full force,
that first huge flare after a year of having had
things settle down, Were you hoping it was just like
a temporary blip.
Speaker 5 (20:52):
Yeah.
Speaker 1 (20:53):
I could compare it to the mindset I had when
I first had symptoms. I was just like, I'm just
going to be feeling like this today, or I'm just
gonna be feeling like this this week. And then the
week turned into two weeks and it was like, nope,
it's here.
Speaker 5 (21:06):
We go again.
Speaker 4 (21:07):
And then what happened?
Speaker 1 (21:09):
Then I flared, So all of the symptoms came back
full force, the fatigue, the blood, the pain. They had
tried in other kind of regiment of medications. They had
tried to increase hostages and nothing worked this time. So
it got to the point where I was I was
hospitalized for a good portion of time and actually had
(21:32):
to take a semester off of school because I was
missing so much of it.
Speaker 4 (21:37):
That's so much Jose, Yeah, you must have just felt
so overwhelmed with having to just fight through every day.
Speaker 1 (21:49):
Yeah, it was difficult because at the worst I was
just long term admitted to the hospital and my condition
was continuously dropping.
Speaker 5 (21:59):
None of the treatment was working.
Speaker 1 (22:02):
I dropped down to round one hundred pounds.
Speaker 2 (22:08):
So we went into a lot of problems. He was
not keeping food down. They had to put a food
tube in him, which in itself was very, very scary
and difficult to make a decision, but there's no other choice.
So I pretty much lived in the hospital with him
for a whole month, and that was very hard.
Speaker 1 (22:32):
It was quite a battle, and yeah, I was pretty
much experiencing everything he could possibly experience associated with colliitus.
Speaker 4 (22:39):
At that point, after everything you had been through too,
and he had been through, that just must have been
like how much more can you two take?
Speaker 2 (22:50):
It was very hard, but you can't give up, right,
You have to keep going. There has to be some
kind of bright light at the end of all of this.
Speaker 4 (22:59):
It must have been like an may or that you
felt you couldn't wake up from.
Speaker 2 (23:03):
It was you don't want anyone to have to go
through that with a child, and like I said, the
weight loss was scaring me and I felt like I
was losing him.
Speaker 4 (23:14):
Were you afraid for sure?
Speaker 1 (23:16):
Because I was again at one hundred pounds with that
with everything going on, like it came back to that.
Speaker 5 (23:21):
Question of what now, like what could potentially happen here?
Speaker 4 (23:25):
I say, how long were you in the hospital?
Speaker 5 (23:27):
It was in and out a couple of months.
Speaker 1 (23:30):
And then the doctors came to me and they were like,
to be Frank, there's two options here. There's this due
form of medication that's out that we can see if
that works after a couple of infusions or their surgery.
Speaker 4 (23:44):
And by surgery, it means to take a huge chunk
of your intestines.
Speaker 1 (23:49):
The entire large intestine, the entire large intestine out. So
again at nineteen, me and my mom were sitting there,
you know, having to make the decision, and you know,
we're like, let's shot the medication because we're not going
to opt into such a major surgery.
Speaker 5 (24:04):
So we did, and that didn't work.
Speaker 4 (24:07):
I'm sure your mother is trying to be your biggest
support system at that point, but were you ever worried
about her? Did you then kind of make that the
guilt of being sick when you see how it impacts
someone else is sometimes overwhelming.
Speaker 5 (24:31):
Yeah, one hundred percent.
Speaker 1 (24:32):
I mean, she took time off of work, could the
nights at a stay in the hospital.
Speaker 5 (24:35):
She was there with me, even if she had a
sleep on a chair.
Speaker 1 (24:38):
She was there throughout that entire time, and even to
this day sometimes I think about it because you know,
my mom was always a very strong woman, but after
this diagnosis, she became very anxious. So I always think
back to myself, like, I wonder was it because of
my diagnosi that she got that way?
Speaker 5 (24:54):
So, yeah, it definitely took a toll.
Speaker 4 (24:57):
What did her being there for you mean to.
Speaker 1 (25:00):
It meant the world because growing up I was raised
by my grandparents because my mother had me very young,
so she was as present as she could be. But
it wasn't until I moved in with her when I
started high school that we really started to build a relationship.
But it was during this period where I couldn't thank
her and appreciate her enough for just her being there
(25:22):
at the time where I frankly needed somebody the most,
and she was there.
Speaker 4 (25:26):
Desperate to avoid major surgery and the risk of irreparable
damage to his intestines. Jose began a series of infusions
to reduce the kalita symptoms and hopefully improve his quality
of life.
Speaker 1 (25:39):
I believe it was either two or three rounds of
infusion over a period of a few weeks and nothing improved.
Speaker 5 (25:46):
So now now we had to do the surgery.
Speaker 4 (25:49):
Surgery is not even a choice, it's a necessity to
save your life. Yeah, all right, walk me through the surgery.
Speaker 5 (25:59):
Yeah.
Speaker 1 (25:59):
The first surgery was a total collectomy, so again, removal
of the entire large intestine. I'd been told going in,
you're going to have an ostheme bag for a time,
possibly forever, but at least the idea was for it
to be for a time.
Speaker 4 (26:14):
The collectomy was the first and what would be a
three part surgery sequence, creating an external bag to collect
bodily waste. Doctor Bosworth took over Jose's care after his
first surgery, and from the beginning they established a relationship
built on trust, the basis of what would become a
lifelong partnership.
Speaker 3 (26:38):
Most patients when they have the jpouch surgery beforehand are
apprehensive and really fearful that they're going to be left
with a permanent bag and having completed his surgeries. That
was one of the things that he was concerned about.
Am I going to have to have another surgery and
then be left forever having a bag outside? And how
(26:58):
is that going to impact his life?
Speaker 1 (27:03):
I remember just feeling relief because doctor Bosworth, even at
that time, was extremely well regarded in the space.
Speaker 4 (27:11):
Do you remember meeting jose and his mother for the
first time?
Speaker 5 (27:15):
Very well.
Speaker 3 (27:16):
He now he comes to appointments without his mother from president,
but the very beginning she was right there by his
side every step of the way. And when we first met,
we talked through what his course beforehands had been, and
what the decision to actually undergo surgery was and what
that meant for somebody who was eighteen nineteen twenty years old,
(27:36):
and how I was going to help both of them
together go forward and what that meant for them as
they continued on with him having the EJ Pouch.
Speaker 1 (27:46):
The confidence in which that he spoke, and even his
rapport and bedsign manner like, he was just very comforting.
It was almost like talking to a friend, if you will.
Didn't feel like I was talking to a doctor. He
was is very approachable.
Speaker 3 (28:03):
One of the things that I think is really important
in working with patients and their families. And a goal
is that patients with chronic diseases are going to have
chronic diseases, but it shouldn't be who they are, and
it shouldn't control their lives. And being able to help
to restore some degree of control, some individuality, and some
(28:26):
ability to function. Knowing that you have this but it's
not dictating what you're doing is a challenge. And working
with both Jose and his mom together both to get
past some of the anxieties of the therapies that he'd
had in the past, what the future might hold, treat
any flares that might occur, but also give them hope.
(28:47):
And I think that hope is such an important concept
when you're talking about a chronic disease.
Speaker 4 (28:56):
The first surgery to remove Jose's large intestine was a success,
but the doctor still needed to perform a few additional
procedures to ensure he was set up for long term
recovery and comfort.
Speaker 1 (29:09):
I had pretty much every post surgical complication you could
possibly have just because of the health state I was in.
They started to slowly introduce foods and I was regularly
having blockages with the ostomy, so they actually had to
do another minor surgery not too long after the major one,
to increase the size of the ostomy to allow things
(29:30):
to kind of like pass through better.
Speaker 3 (29:32):
Fairly shortly after surgery, he came in and was having
some bleeding. And when you're patient with lcercalitis who was
diagnosed because you were bleeding, it evokes so much And
I'm going to say it, even though it wasn't form,
I know it's post traumatic stress disorder, right. You really
have that PTSD reaction when you see something that reminds
(29:52):
you of a place when you were so sick and
there was nothing that was happening. There's a lot of
both anxiety that occurs and real fear of what's to come.
Because if you've now already had surgery, what's the next step.
How could I have more surgery? But Colon's gone, but
yet I'm still bleeding. And so we did a pouch
asibly we looked in infect His pouch did not have
(30:13):
any inflammation.
Speaker 4 (30:15):
The next step for Jose was surgery to remove the
rectum and create a J pouch, preparing him for a
third procedure that would eliminate the need for an external
bag for his digestive system to function.
Speaker 5 (30:27):
That third surgery was success.
Speaker 1 (30:29):
They were able to reverse the ostomy and the jpouch
surgery and that three part sequence had been completed. But
it was just such a relief to know that the
ostemy had been reversed and now there could be a
potential way forward for me to move on with my life. Frankly,
it just made me appreciate everything so much more, even food,
because you know, going through this recovery period of eating
(30:52):
plan things or liquid diets and whatnot. Literally, just the
little things I learned to appreciate in value more. Yeah,
it's just completely shifted my perspective.
Speaker 4 (31:03):
Well, that is such a lovely way to look at things,
after everything you've been through, pulling the positives from it.
After enduring numerous complications and finally undergoing the successful three
part surgery, Jose's treatment has now shifted to symptom maintenance.
This consists of regular checkups to monitor his inflammation and
(31:26):
ensure everything remains under control. Having navigated the terrifying road
to relief, he is now determined to be an example
to others living with IBD. He currently works at the
Crones and Kalidis Foundation, having started there as an intern
and worked his way up.
Speaker 1 (31:43):
There's a camp program for children that have closes these
and alsative colitis that the foundation runs.
Speaker 5 (31:50):
So I did that and that changed my life.
Speaker 1 (31:53):
Again, just going to a camp and seeing these kids
who were the youngest were around six seven, oldest being
you know, seventeen, and these kids dealing with what I
just went through, and it's just like, geez, some of
these kids have ostomies that are not going to be reversed.
Some of these kids are on medications that they're never
(32:13):
going to get off of, and just to see them
enjoy that week of camp as if they were normal kids.
Speaker 5 (32:20):
But it's just kids being kids at the end of
the day.
Speaker 1 (32:22):
And the kids are always so grateful to the counselors there,
but you know, amongst us, counselors were always like, the
kids don't know the effect they have on us. Again,
you just see life in a different way, like if
these kids are doing it, and then why can't I.
I'm sure they look at us and reverse like, oh
they're older, they're living with what I have, they're successful,
then I can do it too. So it was just
such a powerful experience. I volunteered as a counselor for
(32:43):
ten years.
Speaker 4 (32:47):
You must be so proud of how he's blossomed in
spite of all of this.
Speaker 2 (32:54):
Yeah, he's so strong. I don't even think I would
be able to do what he did. I don't think
I would have the strength and the positiveness that he has.
He wanted to share with the kids, he wanted to
see them. He went for years just trying to see
how they progressed and trying to share his story and
tell them that they're going to be okay. And he's
(33:17):
a really strong person.
Speaker 4 (33:18):
So if your health struggles depleted you after getting diagnosed,
involving yourself in that community was what replenished you.
Speaker 5 (33:29):
Percent.
Speaker 1 (33:29):
It gave me a community. It gave me friends that
I still have to this day that again could just
really understand everything because they're going through it themselves or
have been through it themselves. I've been with the Content
Clientist Foundation as a full time employee for the better
part of the last eight years now, which I'm again
just extremely extremely grateful for so so many pieces Like
(33:50):
I look back on it and it was one of
the worst things that have ever happened to me. Ended
up being such a blessing because it's created the career
that I have that allows me to myself and live
the life that I want to live and help my
family however I can help them and be there, So
I honestly don't know what my life would look like
today if it wasn't for all of those experiences occurring
(34:12):
the way they happened.
Speaker 3 (34:14):
His ability to give hope, his ability to counsel and
celebrate the wins for other patients, be able to look
back and reflect and.
Speaker 4 (34:22):
One what he's doing.
Speaker 3 (34:24):
It's just incredible, and I'm so proud of the work
that he's doing, and he knows he's making an impact,
and I know he's making a real impact both in
other patients and for himself too.
Speaker 4 (34:35):
In what ways do you think watching him box did
help you?
Speaker 2 (34:40):
That's a tough question. I guess the boxing, I'm worried
that he's going to get hurt. You're right, but you
can stop it. But with the disease, you can't stop it.
You can't run away from it. You just have to
cope with it and be strong and just go on
with it.
Speaker 4 (35:00):
What do you want people listening to take from your story?
Speaker 5 (35:03):
Always have faith, and hope.
Speaker 1 (35:07):
This is going to sound super cliche, but an attitude
of gratitude goes a really long way to just really
be grateful for what you have and even if you're
in a bad situation, do the best you can to
learn and look for help and resources and support, like
never be too proud to do that, and just do
what you can and.
Speaker 5 (35:25):
Just never give up.
Speaker 1 (35:26):
Hope there could be a way where you could change
your situation.
Speaker 4 (35:32):
You can find out more about both Crones and Colidis
at the Crones and Colidis Foundation website at Cronescalidisfoundation dot org,
where you might also come across some of Jose's work.
Speaker 5 (35:48):
My name is Jose Tares.
Speaker 1 (35:49):
It took me about a year to get my proper
diagnosis of all short of colitis and three surgeries later
in over a decade. Now I'm fortunate enough to have
no symptoms and be living a normal life.
Speaker 4 (36:05):
On next week's episode of Symptomatic, Kelly du Bois is
suddenly confronted with severe heartburn, rapid weight gain, and appealing scalp,
leading her on a confusing path that even led to
brain surgery.
Speaker 6 (36:19):
I looked up and I saw my neurosurgeon and he's
asking me the questions like you see on TV when
you know something really bad happen? Do you know your name?
Do you know what year it is? And do you
know who's the president? And I've struggled to speak.
Speaker 4 (36:36):
But when brain surgery leaves her with irreparable damage and
without much relief, she becomes desperate for answers to what
really is going on. As always, we would love to
hear from you. Send us your thoughts on this episode
or share a medical mystery of your own at Symptomatic
(36:57):
at iHeartMedia dot com. Please rate and review Symptomatic wherever
you get your podcasts. We'll see you next time. Until then,
be well. Symptomatic is a production of Ruby Studio from iHeartMedia.
Our show is hosted by me Lauren Bret Pacheco. Executive
producers are Matt Romano and myself. Our EP of Post
(37:18):
Production is James Foster. Our supervising producer is Cierra Kaiser.
Our writers are John Irwin and Diana Davis, and our
editor is Sierra Spreen
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