Latest / Crohn's & Colitis Unfiltered / Ulcerative colitis, misdiagnosis and finding her voice: Pamela’s long road to answers

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Ulcerative colitis, misdiagnosis and finding her voice: Pamela’s long road to answers · Crohn's & Colitis Unfiltered

0:01
IBDs can take a toll on your mental health. And
0:07
you can feel very much alone. And we hear about
0:13
suicide every day. And we hear about people who
0:19
do very terrible things to themselves. because
0:25
of their depression. And what I want to say is
0:30
that I used to be like you. I was very depressed
0:33
for a very long time. But then I understood that
0:37
my life, even if it is not perfect and even if
0:41
it has this defect, we might say, which is an
0:46
IBD, can still be lived and you still need to
0:51
feel worthy of the gift of life. This is Pamela,
0:56
who got diagnosed with ulcerative colitis at
1:00
age 32 in Latina, Italy. For years, Pamela struggled
1:05
with active disease symptoms without even knowing
1:08
that she was living with inflammatory bowel disease.
1:12
She was treated for hemorrhoids, but none of
1:15
her doctors ever even suggested a colonoscopy.
1:19
It was only when Pamela took matters into her
1:22
own hands official diagnosis. And today on the
1:28
Colitis Unfiltered podcast, she's going to take
1:31
us through what it was like to suffer for years
1:33
and what it's like to live with ulcerative colitis
1:36
today. My name is Frank Tabering and Pamela,
1:39
welcome to the show. It's a pleasure for me as
1:43
well. Thank you for having me. And thank you
1:46
for joining me. We're going to talk about your...
1:49
personal IBD journey. You got diagnosed with
1:52
ulcerative colitis, but based on what I know
1:54
about you, the diagnosis was not very clear cut,
1:58
right? And I think it took some time to get there.
2:00
So why don't we go back to the start and tell
2:03
me a little bit about your first symptoms and
2:06
what happened to you, what happened in your body
2:09
that prompted you to seek some medical attention?
2:12
When I was around 16, 17, I can't remember. actually.
2:18
I started bleeding when I used the toilet. At
2:22
first, I only told my mom and she said, you know,
2:26
don't worry, it's hemorrhoids. Everybody in our
2:28
family has had hemorrhoids in their life, so
2:32
it's not a big deal. Just go to a doctor who
2:35
will give you, you know, medication for it and
2:38
it will be okay. And that's what I did. But my
2:43
doctor, my personal physician, actually prescribed
2:47
me some enemas that are actually used in the
2:54
treatment for ulcerative colitis, as well as
2:58
to treat hemorrhoids. So I got better. And, you
3:05
know, two, three times a year, I had these episodes
3:10
of bleeding. You know, I used those animals and,
3:13
you know, it eventually passed. Then one day,
3:18
I was 20, 30, I was 30. I started bleeding and
3:24
it never stopped. I bled while walking down the
3:29
street, for example, and I had to use, you know,
3:32
pads when I left the house because, you know,
3:36
it was uncomfortable in a way. So I decided to
3:41
go to a surgeon and he never told me to have
3:46
a colonoscopy. Never. He said, OK, I'm going
3:51
to operate to you as soon as possible. And he
3:54
did. I underwent surgery without having had a
4:00
colonoscopy or a rectoscopy, which might be dangerous.
4:10
So it was not a professional decision at all.
4:13
He goes, what if I had a cancer? What if I had
4:18
colon cancer and you are operating me for hemorrhoids
4:22
and then, you know, it might develop in a negative
4:28
way? So I underwent surgery. Post -op is terrible
4:37
when you undergo this kind of surgery. And the
4:42
diet you have to follow is very strict. It's
4:46
the diet you follow when you are on a flare,
4:49
basically. So I, you know, underwent surgery.
4:56
Everything went back to normal. And I said, OK,
4:59
this was this was terrible, actually, because
5:03
it was painful. But it was the best decision
5:07
of my life. And for a year. two years, two years
5:12
or so, I never experienced any symptoms. Two
5:17
years ago, I noticed because I went to a birthday,
5:23
the birthday of my friend's mom and she's Ethiopian.
5:28
So we ate Ethiopian dishes. And this means chili,
5:34
paprika and cumin and everything you cannot have
5:38
when you have ulcerative colitis. Spicy. Yeah,
5:41
spices everywhere. I remember I couldn't taste
5:46
the sweetness of the cake when it came to the
5:50
cake moment because my mouth was burning. So
5:56
I could not taste the cake. And the day after.
6:01
I started bleeding again. So I contacted my surgeon
6:06
and he said, don't worry, I'll give you some
6:09
medication. He gave me some pills, which you
6:13
can buy at the supermarket as well here in Italy.
6:17
And that was it. But I didn't improve. I started
6:23
going to the bathroom 15 to 30 times a day. And
6:31
I bled profusely. I started being very weak.
6:35
I started losing weight. So I went back to the
6:39
surgeon and he said, I'm going to visit you.
6:43
So he visited me with a nanoscope and he said,
6:47
yes, you have developed hemorrhoids again, but
6:50
they cannot be operated again because they are
6:53
too close to your vaginal section. So we cannot
6:56
operate them. Just take... eight of those pills
7:00
and that will be fine. Two months passed and
7:04
I was not improving. It was getting worse and
7:08
worse. I couldn't have a normal life anymore.
7:11
So I decided to go to another doctor whom had
7:17
been suggested to me by my personal physician.
7:21
And this doctor, as soon as he put the anoscope
7:25
in me, He said, you have ulcerative colitis,
7:30
stop everything. And he was the one who realized,
7:36
who understood what I had after more than 10
7:42
years. Wow. So over 10 years of suffering and
7:47
living with a disease that you didn't know that
7:49
you had. And very clearly, this can be attributed
7:53
to either negligence or malpractice. In what
7:57
way did you lose trust in the healthcare system
8:00
and doctors? And in what ways were you able to
8:03
reconstruct that trust? And I say reconstruct
8:06
that trust because if we live with IBD, we have
8:09
to rely on specialists, on doctors, right? So
8:12
how did that relationship with the healthcare
8:15
system and the medical fields go for you over
8:19
those years? Actually, in my case, unfortunately,
8:23
my gastroenterologist, the first one, I went
8:26
to was not very positive, a very positive experience
8:31
as well. You know I rebuilt my trust in doctors
8:37
in general when I met my current gastroenterologist.
8:41
I had to go to Bologna for it so it is in the
8:46
north part of Italy while I live in the middle
8:48
in center of Italy. But luckily, my mother -in
8:53
-law lives 20 minutes from that hospital, so
8:56
she can help me when I'm there. And this doctor
9:03
changed my life completely. Seriously, he changed
9:10
my life for the better. So that's a very positive
9:15
experience that you felt, luckily. I can very
9:18
much relate to that because... When I was diagnosed,
9:20
I was out in Los Angeles and my first experience
9:23
was very, very bad. And that was also because
9:26
I was very naive and I didn't know anything about
9:27
it. And three months after suffering, I also
9:30
discovered that, you know, out there we have
9:32
UCLA, a big university, and they have a very
9:35
sort of state -of -the -art IBD center. And once
9:39
I went there, my entire life changed, right?
9:43
I got more confident. I received the care that
9:46
I needed. And even in consultations, The doctors,
9:49
they actually sat me down and explained to me
9:51
properly what IBD is and what the treatments
9:54
are, right? And it's a world of difference once
9:57
you find that person. And that's why I always
9:58
say, once you find that right specialist, hold
10:01
on to that person. That's very, very important.
10:05
So let's go back a little bit to the time where
10:08
you experienced most of the suffering. You mentioned
10:11
to me that you had... days where you had to run
10:14
to the bathroom 15 to 30 times yeah this is something
10:17
that's also still fresh in my memory even after
10:19
you know 13 years of being in remission tell
10:22
me a little bit about how you managed those uh
10:25
those days i know physically it's exhausting
10:27
but mentally how did you fight through those
10:32
moments how did you keep the hope how did you
10:35
keep trust in your body that was basically giving
10:37
up right in front of you i was very lucky I was
10:42
very lucky because the relationship with my mom
10:47
that had not been very positive for some time
10:51
improved. She was, you know, she stayed close
10:56
to me and she helped me a lot. And also what
11:01
helped me was... the fact that my then best friend,
11:07
who is now my husband, my then best friend, you
11:11
know, was very close to me and helped me and
11:14
supported me in every way possible. So I never,
11:19
you know, I always thought it's going to be better.
11:23
It's going to be better. Now I know my diagnosis.
11:28
Because it had been a mystery diagnosis for a
11:31
while, I felt kind of relieved after having had
11:37
the diagnosis. And the symptoms were, to me,
11:43
were only temporary. I could deal with them.
11:47
Because, you know, I just had to find the right
11:50
treatment in my mind. So I treated this period
11:55
of time as temporary. And that's what made the
11:58
difference, I think. I think there's a very close
12:00
connection between making it mentally through
12:05
those tough times if you have the right support
12:07
system. And there's a bunch of parallels between
12:11
my story and your story now that I actually,
12:12
you know, just jump into my mind. Because for
12:14
me, it was also my mom that was very close. And
12:17
she was really present. And at least that took
12:20
some pressure off for me, right? And I could
12:22
really focus on, it's really hard to say this,
12:24
but I could really focus on the pain, the suffering,
12:27
running to the toilet and nothing else. Because,
12:30
you know, I had a person there to support me
12:32
through all of this. And it seems like, you know,
12:33
your mom and your, well, now husband were there
12:36
for you as well. That year in particular, around
12:40
that time, it was a very particular moment at
12:44
work because it was my trial period that usually
12:48
lasts one year and then you become a permanent
12:51
teacher in Italy. So I couldn't stay home too
12:55
many days. I had to go to work. And I remember
13:00
my mom came home one day with diapers used for,
13:05
you know, women who have just had a baby. So
13:09
she came home with diapers and said, put this
13:12
on when you go to work so you don't have any
13:14
problems. And I was like, how am I going to do
13:17
that? But, you know, she was very supportive
13:20
and she came to every doctor's appointment. She
13:23
never missed one. It was very, very good for
13:28
me. And at the same time, she found out she also
13:34
had an autoimmune disease, which is rheumatoid
13:41
arthritis. So I'm doing the same for her at the
13:46
moment. That's great. You get to give back. Yeah.
13:53
Before I actually ask you about your treatment,
13:56
you said something that sparked my interest.
13:58
And since there's absolutely no rules on this
14:00
podcast, we're just going to jump all over the
14:02
place. You mentioned having a try period at work
14:05
while you're symptomatic. How did you manage
14:08
this? Because again, when you're really flaring,
14:11
and you're going to tell me in a second what
14:13
the intensive disease was, it's almost impossible
14:15
to spend any additional energy besides on yourself,
14:19
right? And making it through those days. But
14:20
did you inform your workplace? about your condition?
14:24
Did you keep it silent? And then how did you
14:27
actually manage throughout that time while being
14:30
in pain and flaring as well? I informed my tutor,
14:35
but I never told my principal. So they knew.
14:39
But in my case, the school I work in is very
14:43
old. It is a very old school. I think it was
14:47
probably built around the 1960s. It's very old.
14:52
And the problem is that we don't have teachers'
14:56
bathroom on each floor of the school. So my problem
15:03
was how am I going to leave the classroom? How
15:07
am I going to reach the closest bathroom, which
15:11
is not close enough for me? And so I started
15:17
actually wearing diapers. I started wearing diapers.
15:23
I was honest with my students. I told them I
15:28
have an autoimmune disease. I need to leave and
15:30
go to the bathroom. Please be still, be responsible.
15:34
I need you to be cooperative. And they actually
15:37
behaved very well. They immediately showed empathy
15:43
and they supported me and they never complained
15:48
about, you know, me having to stay home when
15:53
they were busy in that particular timeframe and
16:01
they needed their lesson, but I couldn't physically
16:05
go to school. So in my case, the problem is the
16:09
structure of the school, the building itself,
16:12
because it is very old. We don't have many bathrooms.
16:16
I managed. to survive that year, actually, wearing
16:22
diapers and menstrual panties that I sell around.
16:30
I used to wear them and I still do when I'm on
16:33
a flare. So you did what you had to do, basically,
16:36
to get through that year and manage your symptoms
16:42
and suffering the best you could. Let's go back
16:45
now to talking about treatments, because I'm
16:48
sure that when you were diagnosed, your specialist
16:51
at that time said, this is the medication we're
16:53
going to put you on to see how your body and
16:56
how your intestines react. Take me a little bit
16:58
through what medications you have been on. And
17:03
then ultimately, second part of my question is,
17:05
how are you feeling today and how are you managing
17:07
your ulcerative colitis these days? Yes. So they
17:12
immediately prescribed me mesalazine. But the
17:16
first gastroenterologist I went to only prescribed
17:20
me 800 milligrams three times a day. And it is
17:25
a very low dose for someone with a flare. And
17:31
she never changed the dose throughout the...
17:36
year and a half that I was under her care. And
17:40
that's what made me decide to go to Bologna.
17:45
This happened actually because I was on this
17:50
dose for, you know, many months and I never improved.
17:54
Never. I kept going to the bathroom. I kept having
17:58
blood. I kept, you know, you name it, I had it.
18:02
One day we went on a trip with my husband's colleagues.
18:08
And among one of them, there is a guy who has
18:11
ulcerative colitis as well. And I noticed he
18:15
took double my dose, the exact double. So I said,
18:22
why do you have this dose and I have that one?
18:27
And he said, you know, I think you should change
18:30
your gastroenterologist. When I went back to
18:34
my gastroenterologist, she said, you're not following
18:37
what I'm asking you to do. You're not following
18:41
your diet. You're messing everything up. The
18:45
dose cannot be raised. You're already taking
18:48
the maximum dose. Now I'm going to put you on
18:52
biologics. And at that moment, I'm still in the
18:59
process of... Studying the biologics technique,
19:04
let's say, the biologics medication, I need to
19:09
be sure about what I put in my body, you know.
19:13
And I'm still not sure about biologics at the
19:18
moment. So I decided to go to Bologna. And in
19:22
Bologna, they gave me double the dose. So I'm
19:28
now on 1 ,200 milligrams of mesalazine four times
19:33
a day. And I have been, when I went to Bologna,
19:38
they gave me a huge dose of prednisone. Huge.
19:45
My face was this big. I got 30 kilos that I cannot
19:51
lose no matter what I do. So I actually got weight.
19:58
You know, I can accept it. It's not my fault.
20:03
And at the moment, I'm still on this dose, but
20:07
we need to perform a second colonoscopy in February
20:13
and decide if I have to recur to biologics or
20:21
not. Are you symptomatic currently or do you
20:24
feel like you're in remission? I feel like I'm
20:28
in remission. Actually, my calprotectin says
20:31
the contrary. My calprotectin levels are still
20:36
high but I don't have any symptoms at all. So
20:42
my doctor will have to decide what to do. It
20:48
is true that I had this terrible bacterial infection
20:54
in August and I'm still recovering from it. Because
20:59
when I went to the hospital in August, my calprotetin
21:03
levels were beyond 8 ,000. So I think it takes
21:09
some time after that. Could very much be related.
21:14
And I think, you know, the key here is that you
21:16
don't have active colitis symptoms, which is
21:19
really great. And since you have a colonoscopy
21:21
in February, I think it's going to ultimately
21:25
show your disease activity. And hopefully there
21:27
is none, right? And you can stay on the mesalamine.
21:30
Now, beyond medication, you did mention when
21:34
you went through periods of treating your hemorrhoids,
21:36
you already adjusted your diet, especially after
21:38
the hemorrhoid surgery, which is true because
21:40
the recovery is pretty strong. What other lifestyle
21:43
changes have you undertaken since your diagnosis
21:47
with ulcerative colitis? Well, in my case, I
21:51
was sport addicted, let's say. I used to go to
21:55
the gym every day. you know, two hours a day.
21:59
I, you know, I loved going to the gym. I loved
22:02
being active. And ever since I had my diagnosis,
22:08
this changed. First of all, because in, you know,
22:11
the first month I couldn't actually, you know,
22:17
I had to go to the bathroom every now and then.
22:19
So, you know. I had to go to the bathroom very
22:22
frequently, so I couldn't do sport anymore. It
22:26
was difficult for me to go to the gym and, you
22:29
know, have these huge training sessions that
22:33
I used to have in the past. That is what changed
22:37
in my lifestyle most of all. But what's changed
22:43
also is my sleeping schedule. I sleep a lot.
22:50
A lot. And I was the kind of people who slept
22:54
three hours a night and it was okay. At the moment,
22:58
I need to sleep eight hours a night and then
23:00
sleep four hours in the afternoon to be active.
23:07
So this changed a lot in my habits. And what
23:16
also changed a lot is that sometimes I feel...
23:21
the need to say no when I didn't in the past.
23:27
And these are great ways to listen to your body
23:31
more and to respect your body more. We always
23:35
have this tendency to forget that IBD has so
23:41
many symptoms that are not just limited to running
23:43
to the bathroom, diarrhea, bleeding, right? So
23:46
I always say fatigue. is one of those long -lasting
23:49
symptoms, right? I've been in nutrition for 13
23:51
years, but I very much often struggle with fatigue,
23:54
and it's certainly not an excuse. But when I
23:56
do, I do prioritize rest because, like you just
23:59
said, sleep is not only necessary, but it's important
24:05
for your mental state, number one. And if your
24:08
mental state is rested, then it sends some good
24:10
signals to your gut, and that might help as well.
24:13
So I think you're doing the right things to listen
24:15
to your body there. Now, we just talked about
24:20
lifestyle changes post -diagnosis. You experienced
24:25
symptoms since your teenage years, essentially,
24:29
which means that you've been sick for quite a
24:31
while and you've been sort of sick through a
24:33
very crucial period of your life. I have these
24:37
questions that I always like to ask because it's
24:39
kind of fascinating to me how IBD impacts people's
24:43
development and their lives. And sometimes I
24:47
ask, you know, how... IBD has changed someone
24:52
as a person. But in your case, since you've been
24:54
living with colitis probably for way longer than
24:56
you've been diagnosed, I'm going to ask you how
24:59
you think that IBD has shaped you as a person
25:04
or the human being that you are today. It has
25:08
been a very recent change, I might say. I started
25:14
to prioritize myself. That's what I do today.
25:19
I have become more selective in my friendships,
25:26
for example. I only, you know, trust people who
25:32
show me their support. I have become, I think,
25:39
a little selfish, but in a good way. Because,
25:44
you know, what happened to me, especially, for
25:48
example, when I was, you know, when I had the
25:53
surgery, was that after the surgery, I couldn't
25:58
go back to a normal life for two months. So,
26:02
you know, more or less two months. And some of
26:06
my friends never came home to visit me. And I
26:12
couldn't leave the house because when you use
26:16
the toilet after having your hemorrhoids removed
26:20
is like hell. The pain is something I do not
26:26
wish on my worst enemy. And that made me realize
26:33
there was something wrong, that my health had
26:37
to be the most important thing for me. I had
26:44
to put myself first. And that is what before
26:50
I had never done. I always put the others first
26:55
and then I came after them. And today I cannot
26:59
allow that anymore. What happens to me very frequently
27:03
is that someone comes to me and says, you know,
27:07
I have some digestive problems as well. So I
27:12
understand you. No, you don't. Shut the hell
27:15
up. you don't so you know i'm very outspoken
27:20
so when they uh you know come to me and say you
27:24
know i have celiac disease it's it is the same
27:27
i have problems as well no you don't do do not
27:31
eat gluten and nothing happens and you know so
27:35
i've become more outspoken and more you know
27:40
sincere let's say I got to tell you, you definitely
27:45
learned all the valuable lessons for someone
27:49
who is dealing with IBD and doing what you need
27:54
to do to come out stronger on the other end.
27:56
So I commend you for that. Even though those
28:00
are all positive developments, there is very
28:04
much this presence of fear for what might happen
28:08
in the future. among the IBD community. And you
28:12
can be the strongest person mentally and physically,
28:15
for that matter. But still, there is not one
28:19
person that I've talked to since I've been doing
28:23
this who has not expressed some type of concern
28:27
or fear for the future, right? Earlier, you mentioned
28:29
you're not too sure about biologics and what
28:31
that could do to your body. So how do you handle
28:34
this uncertainty or this fear that potentially,
28:39
down the road because you're very young your
28:43
IBD might come back with a vengeance harder than
28:47
before that you know medications might not work
28:51
that potentially there is a an option or the
28:54
only option at one point for surgery right these
28:56
are all thoughts that we have at one stage or
28:58
another during our journey how do you handle
29:00
that I used to handle them with anxiety at first
29:05
So I started overthinking and I was like, what's
29:08
going on with my body? What's going to happen
29:11
in the future? But now what I would suggest everyone
29:16
is to find a good therapist, a good psychologist.
29:22
That is what is helping me. I still have some
29:26
fears, which I think is normal for, you know.
29:31
It is common among us. But what the fears I have
29:38
mostly at the moment are related to having children.
29:43
And because, you know, I don't have children
29:46
at the moment. So I always think, will I be able
29:49
to have any children? And what if my future children
29:53
will develop an IBD as well? Because. You know,
29:57
as a mother, you wouldn't want that to happen
30:00
to one of your kids. And I deal with it every
30:06
day with the help of my therapist. She is amazing.
30:11
I can reach out to her every time I need and
30:16
she is always ready to answer. And therapy, I
30:21
think it is... a huge part of our recovery journey
30:25
and of our acceptance journey as well. It is
30:29
extremely important, I would say, and unfortunately
30:33
still very much neglected in most IBD journeys.
30:37
A lot of people don't even know that there is
30:40
help out there. And I find it very striking that
30:44
a lot of specialists also don't really talk about
30:46
this, right? It took me six months into my diagnosis
30:50
that my doctor finally mentioned, hey, we have
30:53
somebody on the staff who specialized in IBD
30:57
therapy, essentially, right? Like psychotherapy.
30:59
And I said, like, this is amazing. Why did I
31:01
not know about this earlier? Right. And so I'm
31:04
a huge advocate for that as well. And I'm very
31:06
happy that you bring this up because I really
31:08
don't care to repeat this every single episode
31:11
if I have to, is that, you know, you are a prime
31:14
example and me as well, that therapy. can do
31:18
wonders it will certainly not help with your
31:20
symptoms but the mental toll that IBD has on
31:23
a human being is enormous and therapy can absolutely
31:26
help with that we're not talking about a cure
31:29
we're not talking about you know the anxiety
31:32
just going away but just having somebody who
31:35
is not a friend not a parent a relative whatever
31:38
partner it it really makes And so that's my message
31:45
also to everybody who's listening. If you are
31:48
struggling, seek some therapy, find someone to
31:51
talk to. It's really going to make a difference.
31:54
You know, IBDs can take a toll on your mental
31:58
health. And you can feel very much alone. And
32:03
we hear about suicide every day. And we hear
32:09
about... people who do you know very terrible
32:15
things to themselves because of their depression
32:19
and what I want to say is that I used to be like
32:24
you I was very depressed for a very long time
32:27
but then I understood that my life even if it
32:32
is not perfect and even if it has these defect,
32:37
we might say, which is an IBD, can still be lived
32:41
and you still need to feel worthy of the gift
32:46
of life. Absolutely, absolutely. And it takes
32:49
time, but it's... the better alternative or at
32:54
least a better option as opposed to not treating
32:56
that part of IBD as well. I'm not a therapist.
32:59
I'm not a doctor. But it's very interesting what
33:01
you mentioned earlier about, you know, getting
33:04
pregnant and having children. I just had a daughter
33:08
eight months ago. And even though, yeah, she's
33:12
great and she's the best thing that ever happened
33:14
to me. Congratulations. Thank you very much.
33:16
Thank you very much. She's really sort of changed
33:18
my life for the good. But my point is here. I
33:21
had some fears too, right? And I'm the dad, so
33:24
I didn't give birth, obviously, to the kid. But
33:27
I still had this fear that, you know, through
33:31
my genes and the genetic part, I might pass on
33:34
potentially IBD or another autoimmune disease
33:38
to her. And my specialist, who was really fabulous,
33:43
she almost acted like a therapist when I told
33:46
her about this. And she reassured me. And of
33:49
course, you never know. You never know what's
33:51
going to happen. But she did tell me that the
33:55
percentage that you can pass on IBD to your child
33:59
is still very much narrow, right? And yes, is
34:04
the percentage a little bit higher if the mother
34:07
has IBD versus the dad? Yes. But still, even
34:13
though the percentage is a little bit higher,
34:14
globally seen, you know, in the bigger picture,
34:17
it's still pretty low. Doesn't mean that you
34:22
won't pass it on. But just listening to that
34:25
and just trying to use a rational, down -to -earth
34:31
thinking, it did calm me a little bit, right?
34:35
And I heard another thing recently, which is
34:38
very interesting because I've been listening
34:40
to a couple of podcasts that focus on pediatric
34:43
IBD because that's something that fascinates
34:45
me as well. You know, every time I see that,
34:47
you know, you have kids that are... four months
34:49
old two months three years old that have IBD
34:52
it just strikes me as like why you know it's
34:53
really unfair but I've been listening to a lot
34:55
of pediatric IBD podcasts as well and there's
34:58
something that really struck me and I really
35:00
like how one of the physicians phrased it he
35:03
said I don't know exactly I don't remember exactly
35:06
the the context but it had to do with sort of
35:08
like the percentage that you know a parent can
35:10
pass on IBD directly to their kid and He said
35:14
a lot of doctors, they say, well, it could be
35:16
about 4 % to 5 % that they might pass it on.
35:20
And he says, I always go the other way. And I
35:23
always tell people, well, there's a 96 % chance.
35:27
that you don't pass it on. And that reframing,
35:30
you know, I think has a completely different
35:32
impact on the patient's thinking and the patient's
35:35
anxiety when it comes to that topic, right? And
35:38
I thought that was very interesting. And I hope
35:42
for you as well, as you continue to navigate
35:43
your IBD journey, that, you know, you'll be able
35:46
to sort of change your mindset around a little
35:49
bit and it will help you, you know, empower yourself
35:51
as well and maybe sort of combat that fear that
35:54
despite there being a risk, There's also a very
35:58
big chance that, you know, any children that
36:00
you might have might be extremely and hopefully
36:02
very, very, very healthy, right? So I just thought
36:04
that I would share that. When I asked you that
36:09
last question, you basically said, I recommend
36:12
people do this or approach this. And I always
36:15
say people who live with IBD are the best people
36:18
to give advice. to people who live with IBD or
36:21
to people who know people who live with IBD,
36:23
right? So the first advice that I would ask from
36:27
you for people who live with IBD is if I'm someone...
36:35
who's navigating a similar journey than you,
36:37
that I'm young and I know that there's something
36:41
wrong and I don't really get the right answers
36:43
from my doctors or they almost neglect me or
36:47
I feel like there is malpractice happening. What
36:51
would you recommend those people do in those
36:53
cases? When they feel like there's something
36:55
wrong, they don't get all the answers and they
36:57
don't have the right attention from the current
37:00
doctor. It happened to me. Actually, it happened
37:04
to me very recently, I think two months ago,
37:07
that my cousin's friends described his symptoms
37:13
to me. And he told me he had tested his feces
37:18
and it came out with a huge level of calprotectin.
37:23
But his doctor told him... You know, you must
37:27
be stressed. It must be a stomach bug. Do not
37:31
worry about it. And then I gave him the list
37:35
of, you know, blocked work that he had to...
37:38
to do and the name of the specialist I went to,
37:43
so the doctors I went to, the name of the hospital
37:47
my gastroenterologist works for in Bologna. So
37:51
I said, you know, if you need any help, any advice,
37:55
call me anytime, send me text, whatever, just
37:59
keep in touch. Because, you know, what is important
38:03
is that these people must not feel alone. They
38:07
are not battling alone. We are an army. Exactly.
38:12
You know, people should not feel alone. And if
38:16
I have something that can be useful to you, I
38:21
need to share it with you. I have to be active
38:27
and I have to be alert because people were not
38:30
when it was my turn. Yeah, absolutely. Now that
38:35
we've talked about the mental impact of IBD,
38:38
I want to just come back to asking you about
38:42
the physical part. You mentioned when you were
38:44
in prednisone, you gained a lot of weight, you
38:46
have issues losing that weight. Bodies change
38:49
over time with IBD. How do you handle this change
38:54
in your body? How do you deal with your own body
38:58
image? Besides having put a lot of weight on,
39:04
I started losing my hair. Uh, my curl pattern
39:09
changed. So I need to cut my hair because, uh,
39:16
I had, I used to have long hair and then I started
39:20
gradually cutting and cutting and cutting because
39:23
prednisone had completely, uh, dried my hair,
39:29
uh, you know. It looked like, you know, straw.
39:35
And what happens is that sometimes I look in
39:39
the mirror and I say, this is not me. And it
39:43
might happen. But at the same time, I realize
39:50
that it actually is not me. I'm not the same.
39:54
I'm not the one I used to be before. And change
39:57
is not always negative. And I always think about
40:02
that Michael Jackson song, Men in the Mirror.
40:05
So sometimes you have to make that change. It
40:09
may not be something you want, but something
40:13
you need. Okay, I'm not as thin as I used to
40:18
be. It is not a crime. I should not be ashamed
40:21
of being curvier or, you know, having shorter
40:25
hair. You know... There is no shame in that.
40:32
I'm starting to navigate this new acceptance
40:39
of my body. And I'm lucky because my husband
40:45
is always so supportive. So to him, I'm always
40:49
beautiful. And I think that makes a difference.
40:53
When you have someone who always tells you, You
40:58
look amazing. You are beautiful. You are fantastic.
41:02
It makes a difference. Because when you feel,
41:07
you know, when you feel a little low, you need
41:09
someone to raise you up. Exactly. I always say
41:13
that IBD is a little bit easier to navigate through
41:17
when you have a cheerleader in your corner lifting
41:20
you up, no matter how you feel on any given day.
41:23
So that's very true. I like to close each episode
41:28
by taking a quick look back into the past and
41:30
a quick look into the future. So let's start
41:32
with the past and travel back. Now, having navigated
41:36
what you have navigated in the last plus, well,
41:41
in the last 15 plus years, what you know about
41:44
IBD, what you're going through now, if you could
41:47
travel back in time and speak to the younger
41:51
self, the Pamela at 16 years old. What would
41:55
you tell her? I would tell her, believe in yourself,
42:00
no matter what you're going to do it. There have
42:05
been times in my past where I felt I was not
42:08
enough. But I, you know, I showed myself that
42:13
I can be so strong and that nothing is going
42:20
to take me down. Nothing, not even IBD. So...
42:25
I need to, you know, what I would tell her is
42:28
that she's strong. She's going to make it. She
42:33
doesn't have to listen to this small voice inside
42:39
her head. She needs to go and conquer the world.
42:46
And that's what the Pamela at Your Age Now is
42:50
doing, which is... Really great and a positive
42:54
development. So I'm sure that she should be very
42:56
proud of who she's going to become, you know,
42:59
years later. Looking ahead, here's the million
43:04
dollar question. Do you believe that in our lifetime,
43:08
we will find a cure to inflammatory bowel disease?
43:11
I'm sure about it. I'm sure about it. And I keep
43:16
donating money to research because I think research
43:20
is our best weapon. And I have faith in research
43:27
and in, you know, doctors. And, you know, I think
43:34
that they might find something in stem cells,
43:39
for example, that might help. our condition,
43:43
or they might, you know, find a way to modify
43:47
DNA, you know, they find a way to, you know,
43:52
name Jane Doe's or John Doe's after, you know,
43:57
68 years. But so if they can find a way to give
44:02
a name to Jane Doe's who have been, you know,
44:07
without a name for centuries. they will definitely
44:12
find a way to cure everything. Everything. In
44:18
due time, of course. And what I want to say is
44:23
that my aunt and my grandma died from colon cancer.
44:29
So they probably had an IBD as well, but they
44:33
never knew because, you know, it was, it was,
44:38
you know, they were other times. It was in the
44:40
past. little did they know but we now know and
44:46
progress has been made every day so we need to
44:52
keep our faith our trust up I got to tell you,
44:57
that's a very, very positive way to put it. I
45:00
think you're the first person who answers this
45:02
question with the most reassuring, yes, we will.
45:06
And let's hope so. We really wish that on everybody
45:10
who has to suffer from this chronic illness.
45:12
And listen, it seems like for you, the circle
45:15
closed. You went from somebody who has lost faith
45:20
in doctors to, as you just told me, regain that
45:23
faith in doctors and research. Pamela, thank
45:27
you so much for talking to me today and sharing
45:29
your story. That was really, really great. I
45:31
wish you nothing but the best moving forward.
45:33
I hope that your CalPRO... comes back down even
45:37
further. I hope that your colonoscopy early next
45:40
year will give you the best possible results
45:43
and show virtually no disease activity. I'm sure
45:46
that you and I will catch up about this and you'll
45:49
let me know how that goes. Yes, of course. Keep
45:52
doing what you're doing. My final message for
45:55
you is keep that positive attitude that you displayed
45:58
today. Keep that going. That's very, very important,
46:01
no matter how your inflammatory bowel disease
46:04
journey. continues to develop. And thanks so
46:07
much again for being here today. Thank you. Thank
46:09
you, Frank. Thank you. Thank you so much. That's
46:14
it for today's episode of Colitis Unfiltered.
46:17
I'm Frank Tabering. And if this hit home or hit
46:20
your gut, do us a favor, subscribe to the show
46:22
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46:26
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46:29
We'll see you soon for more inspiring stories
46:32
from the bathroom floor.