Latest / Crohn's & Colitis Unfiltered / Ambition, Crohn’s and acceptance: Lewis’ new IBD normal

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Ambition, Crohn’s and acceptance: Lewis’ new IBD normal · Crohn's & Colitis Unfiltered

0:02
When your body talks, listen, and that's what
0:04
I didn't do for the first 22, 23 years of my
0:07
life. I was just on go, go, go, go, disregard
0:10
everything. I'm a, you know, I need to just stay
0:13
focused. But now it's like, if I feel that flare
0:16
coming on, I'ma just sit back and I'ma just let
0:19
whatever needs to happen, happen without trying
0:22
to push through it. This is Lewis, who got diagnosed
0:26
with ulcerative colitis at age 23. in Doncaster,
0:29
UK. Louis quickly found a treatment that would
0:32
keep most of his IBD symptoms in check, but the
0:35
impact of chronic illness forced him to re -evaluate
0:37
how he treats his body and mind. He would eventually
0:41
be re -diagnosed with Crohn's, and today on the
0:44
Colitis Unfiltered podcast, he shares how he
0:46
manages flares, his good days, and his passion
0:49
for awareness. My name is Frank Tabering, and
0:52
Louis, welcome to the show. Hi, nice to meet
0:55
you. Let's start at the very beginning. Tell
0:58
me a little bit about when you noticed that something
1:01
was wrong, right? Like those first symptoms that
1:04
crept up for you. How did it all start? It's
1:08
quite weird, actually. It was like September
1:11
time of, I think it was 2024. I literally woke
1:15
up one day and I kid you not, I could not stop
1:20
going to the toilet. And I was like, okay, this
1:22
is a little bit weird. And it wasn't... I don't
1:26
know how graphic we can get on here, but it wasn't
1:27
like solid poop either. It was like just yellow,
1:30
green water. And I was like, I don't know what
1:33
I ate last night, but I ain't eating that again.
1:35
And it went into like a week and I thought, okay.
1:38
And that's when I started searching. I was like
1:40
on Google, I was like, how long is diarrhea normal
1:44
for? And it was like, you know, like a couple
1:46
of days up to a week is fine. Anything after
1:48
that, you probably should worry a little bit.
1:50
So I was like, oh, I'm fine. Then it got to like
1:52
the two week mark. I was like. Okay, this is
1:55
like 20 times a day. And this is when I started
1:57
bleeding a lot as well. Like I've always been
1:59
like a bleeder. I don't know why, but I just
2:00
bleed a lot. So for like two weeks, it was like
2:03
just blood, mucus, horrible diarrhea. And I was
2:07
like, yeah, I think there's a problem. So then
2:09
I called the doctors up. I went in and she went,
2:12
oh, let's do a stool sample. You know, because
2:14
I had no other symptoms. It was just that I was
2:16
like, oh, I should be fine. But then I did the
2:20
stool sample and they got back to me like straight
2:22
away. And it was like. something is wrong i was
2:24
like well i could have kind of told you that
2:26
i am pooing a lot and she was like yeah your
2:28
inflammation is off the charts um it's not the
2:31
highest it can be i was like okay she said come
2:33
in i was like fine she's like pressing on my
2:36
stomach and she's like are you having any pain
2:38
i was like no like i generally feel fine besides
2:40
diarrhea a lot i feel great and she was like
2:43
um you should be like jumping off the bed in
2:45
pain i was like i'm not so that's when it it
2:48
went into like the realm of like what is going
2:51
on because like i didn't really have any of these
2:52
symptoms or anything else like any of the markers
2:55
for Crohn's colitis anything like that but the
2:58
inflammation was that high she was like no like
3:00
something is wrong so yeah that's kind of how
3:04
it started so yeah that's crazy by the way you
3:07
asked you know how graphic you can be here this
3:08
is called talking shit for a reason so you can
3:10
just speak your heart's content you know so i
3:14
was like yeah i was just shitting for sure yeah
3:17
cool yeah exactly no no no worries about that
3:19
so that's interesting that so you just you just
3:21
said like it just started just like this so what
3:24
was it literally i mean were you going through
3:26
through any stress in your life anything in particular
3:28
or it was just literally you would just complete
3:30
normal day normal night you go to sleep you wake
3:33
up and and and you have to go to the toilet yeah
3:36
literally and that was the bizarre thing that's
3:39
like some people can kind of pinpoint i was like
3:41
oh i was kind of stressed at this point or they
3:43
could maybe feel it coming on a little bit me
3:45
i kid you not i was in the best shape of my life
3:47
i was going to gym i eat good all the time anyway
3:50
i don't drink i don't smoke nothing so i was
3:52
like hmm like me no there can't be something
3:56
wrong with me 23 fit but then it turns out i
3:59
woke up that one day and i was just like it's
4:01
crazy my life just went from like normal to just
4:04
completely different and it was like nothing
4:07
could have prepared me for that moment but yeah
4:10
that's just how it how it happened i guess Yeah,
4:13
that's definitely an unusual sort of start to
4:16
a colitis journey, especially like when you mentioned
4:17
that you were still feeling okay, right? Because
4:19
for me, like with the first sort of bowel movements,
4:22
then first diarrhea, especially when the blood
4:24
showed up, like there was like some crippling
4:26
abdominal pain that started right away, right?
4:29
And then it's just that mix of like diarrhea,
4:31
but also pain at the same time. So quite unusual.
4:35
So then talk a little bit about through diagnosis.
4:39
So doctor said something is wrong. Did they pull
4:42
you in for a colonoscopy and then gave you the
4:45
official diagnosis, colitis? And if so, how did
4:50
the doctor break the news to you? And had you
4:53
heard of colitis before? Was it all completely
4:55
new to you? It was September time I started having
4:58
the diarrhea, the shits. And then obviously I
5:01
was like, okay, something's wrong. Then he said,
5:03
okay what we need to do is because they did a
5:05
blood test my blood test came fine as well so
5:07
i was like there's like what like what's going
5:09
on with you so he said we're gonna have to do
5:10
a colonoscopy and at first i was like again the
5:13
first 23 years of my life i was healthy i never
5:16
went the doctors never went to the hospital so
5:18
i was like what is that and i was like essentially
5:20
it's a camera up your back end i was like huh
5:22
there was like i was like you're kidding right
5:24
like no they'll go all inside and i was like
5:26
i was so scared but then he went with the nhs
5:30
it's quite overwhelmed at the minute it might
5:32
take a while to get you know, the procedure done.
5:34
So I was like, cool. So then it took all the
5:36
way up till December. So from September to December,
5:39
I was waiting that time, no medication because
5:43
he didn't want to give me anything in case he
5:44
didn't know what was wrong. So I was like, oh,
5:46
damn, like, and then I only got in on December
5:49
because it was like, we have a cancellation tomorrow.
5:51
Can you come in? It was like, yeah, I guess.
5:54
So if I didn't get that cancellation, I might
5:55
have waited another two. I got my colonoscopy
5:58
and it was like, looking around, it was like,
6:00
oh, everything's looking fine. I was like. oh
6:02
great then he got to one point he went would
6:05
you look at their screen for me i was like i
6:06
don't really want to look it's a bit gruesome
6:08
but he said please look i said okay and i looked
6:10
and i don't know if you know you know what tar
6:13
is it's like black tar yeah and it looks like
6:16
that in my in my bowels and i was like oh like
6:18
what is that and he he was going through this
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it was only one section it was really bad and
6:24
he went through this section he couldn't see
6:25
and it just got that bad i was like what is that
6:27
and he said it's like you're almost insides are
6:30
rotting because you're attacking yourself he's
6:32
doing this and i just thought oh so then he said
6:36
all right cool so we can see straight away he
6:38
i think he told me straight away he was like
6:40
there's active colitis like it's there like you
6:43
can see it i was all right and then he brought
6:45
me back out and he was like um yeah so you have
6:48
active prokaryotes so it's like it affects your
6:51
rectum more but it can obviously go to further
6:54
up and stuff and i had a lot of polyps as well
6:57
which obviously i want a new and they remove
6:59
like two polyps and i had one right near my rectum
7:02
but he couldn't remove it because it's too sensitive
7:04
um and he said that maybe a you're bleeding from
7:08
the inflammation but he said you also could be
7:10
bleeding from that polyp because it just into
7:12
you know irritates it a lot so yeah basically
7:15
came out he said you've got colitis we're going
7:18
to do a biopsy and then obviously we'll get back
7:20
to you like with further results but in that
7:22
moment it was like You definitely have colitis.
7:24
There is something wrong with you. And then he
7:26
put me onto enemas and I was like, yeah, yeah.
7:30
That was it. Okay, so colitis, it's official.
7:34
How does it progress from here? Like you said,
7:37
you put on enemas, but are they helping? Over
7:41
the next weeks, months, are they adding any other
7:44
treatment? And sort of how did you settle into
7:47
navigating this disease? Yeah, so... um as soon
7:52
as i like left the hospital they um gave me the
7:57
prescription which was pentasia enemas um and
8:01
then i also have to take eight tablets a day
8:03
as well i believe on top of that so like them
8:04
in the morning the enema at night and when they
8:08
said oh we're going to give you like you know
8:09
some medication i thought they're going to give
8:10
me a few tablets it turns out i left the pharmacy
8:14
with like six big bags of boxes of enemas and
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i was like what are these like what on earth
8:19
are these things and then obviously I got to
8:21
the night time and my mum was a carer so she
8:24
knew what end of the war and I didn't really
8:25
understand it and she's like you have to go on
8:28
your side and put it up and I was like what like
8:29
up my bum she was like yeah and I was like huh
8:31
so then I did it and it's a really weird feeling
8:35
end of the month because when you do it you're
8:36
not allowed to pass for like 30 minutes but it
8:39
feels like you could straight away so it was
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like I did that for around a month or so and
8:45
then They helped a very little bit, but not a
8:48
crazy amount. They helped a little bit and I
8:50
found a bit of relief in them. And then I actually
8:52
went to my consultant and he said, yes, you've
8:55
actually got Crohn's colitis. So he said, the
8:58
Crohn's is causing the prokitis down that side.
9:01
And I was like, all right. So he said, we need
9:03
to kind of put you on something a little bit
9:04
stronger, you know? So yeah, then I went on to
9:08
prednisolone, prednisine. one of them. And they
9:12
was pretty good, but I got big moon face, which
9:15
wasn't, you know, which wasn't like too flattering,
9:18
but yeah. And then I got that. And then further,
9:22
further now after the eight week course, I'm
9:25
on now on adamilumab, I believe it's called,
9:27
the injections. And these have worked a treat.
9:29
Like I kid you not, I literally feel like, not
9:33
my old self, like I still kind of feel a bit
9:35
off, but like in general, like I feel like really
9:38
good. So yeah. So in that case, do you consider
9:41
yourself in remission currently? Are you still
9:43
symptomatic or where are you at today? I would
9:46
say pretty much remission. I get nauseous sometimes.
9:51
The only thing that no medication has been able
9:54
to stop is the joint pain. Like I never really
9:56
had joint pain before, but both of my knees,
9:59
my elbows and my wrists, I really feel it all
10:02
the time. So without the joint pain, I would
10:06
say like I'm... like 80 kind of how i was but
10:10
the joint pain is really quite bad on me so stuff
10:14
like it's like one of those side effects to to
10:16
having the the ibd yeah it's not just you know
10:20
focused on your gut or your rectum but You know,
10:25
there's all these other sort of, I don't know
10:27
if you can call them side effects, but other
10:29
conditions potentially that crop up. You know,
10:30
me, I've been in remission for 12 years now.
10:33
And yet, you know, I think I have periods where
10:35
chronic fatigue sets in and it just kind of like
10:38
hits me like that, you know, for a couple of
10:40
weeks. And I had to try to make sense of it.
10:42
I'm thinking like, oh, am I working too much?
10:44
Is it like the season's changing? But I'm realizing,
10:46
no, I mean, you still have a disease, you know,
10:49
that's going on. It's just, it's in remission,
10:51
right? I guess everybody has their own struggles.
10:54
But yeah, I'm good to hear that you're managing
10:56
right now. So you mentioned earlier, obviously,
10:58
before your diagnosis, you were super fit, you
11:00
know, best shape of your life. Is this something
11:02
that, you know, you've sort of reclaimed now?
11:04
Did you get that back? And what kind of lifestyle
11:08
changes have you made, you know, since your diagnosis?
11:14
Before my Crohn's, well, my colitis, well, my
11:16
diagnosis in general, before that happened, like
11:20
I was a musician and I was... I'm so, I've always
11:24
been like a really ambitious person. I work stupidly
11:27
hard. Sometimes I feel like I'm borderline insane,
11:29
right? So when I did that and then I got the
11:31
diagnosis, I was like, it did kind of take a
11:34
little bit of energy from me. It felt like the
11:36
task that I was usually doing day to day definitely
11:39
was taking, I'd say like to do the same tasks,
11:43
it's like double the effort, but you're still
11:45
only managing the same amount of tasks. So my
11:48
mindset is like, I don't want to be defined by
11:51
this. And I won't let it. So my my point of view
11:55
is if I wake up in the morning and I feel a bit
11:57
off, I'm still going to do what I need to do.
12:01
Obviously, if I'm flaring, I need rest. I will
12:03
I will rest with my flouts when the flouts do
12:05
come. They are really bad. And I'm not going
12:07
to try power through that because that'd be stupid.
12:09
Right. But, you know, in the days when you wake
12:11
up and you do feel a bit off, I think, you know
12:14
what? If every single day I didn't do what I
12:17
wanted to do because I felt off, I would get
12:19
nothing done and I would just. waste my life
12:22
away and again me being such a strong -minded
12:25
person and like I have a dream to get I have
12:28
aspirations just because I've got a chronic illness
12:30
doesn't mean that stops right and I always say
12:33
just because it's harder doesn't mean it's impossible
12:35
so yeah that's kind of my motto to life right
12:37
now I go to gym roughly the same as I used to
12:41
I roughly do the same amount of tasks but it
12:44
is a lot harder and I do feel like I need to
12:47
rest a little bit longer but um yeah i wouldn't
12:50
say i'm in like a debilitating state but i do
12:54
believe that my um chronic illness is quite mild
12:58
in comparison because i do see some people and
13:01
they are bedridden and people have a lot of complications
13:03
me i'm only a year in i've had no real complications
13:06
which i'm thankful for but um yeah i'm just happy
13:10
with the state that i'm in for now and i'm going
13:13
to hopefully continue to try and stay in this
13:15
kind of state but yeah that's my outlook on life
13:17
and that's how my life is now so yeah no that's
13:21
great no i mean of course you know there's there's
13:23
always people out there who are sort of worse
13:25
off but i always i'm always cautious to not really
13:27
compare you know one you know uh condition to
13:31
another i mean everybody has their chronic illness
13:34
that they're dealing with and especially in the
13:36
world of ibd so Everybody has their own challenges,
13:39
right? Yeah, definitely. It's like we say, so
13:41
we're all trying to wake up every day feeling
13:44
our best. Sometimes it's not possible. But what
13:47
I'm really seeing is that no matter... how dire
13:50
your situation is with your IBD. Like everybody
13:54
has good moments, everybody has bad moments.
13:56
Whether it's remission through medication, whether
14:00
it's surgery, the consensus is when you find
14:03
what kind of works for you, then we're all feeling
14:06
better, right? And that's what we all strive
14:08
for. So I don't think that any of us needs to
14:11
make any excuses just because our journey might
14:13
be milder or shorter than somebody else's. I
14:17
always say we're all in this shit together, right?
14:19
And so as long as there's no cure, you know,
14:22
we're still in it together. Yeah, I agree. Yeah.
14:26
So you said it yourself, you know, your IBD journey
14:28
is still quite young over your year dealing with
14:32
it. How do you cope with sort of this fear that,
14:36
hey, there might be a stronger flare coming,
14:39
right? Or maybe the next flare is the one that
14:42
tips you over the edge or medication stops working,
14:45
right? Because we all sort of have those fears.
14:47
How do you deal with that? And sort of how do
14:50
you keep hope alive and positivity as you move
14:54
forward, not really knowing what's going to happen,
14:57
right? I think because of the outlook that I
15:01
have on life in general, I think your mindset
15:05
can really dictate how you're going to feel also
15:09
in the future. We can't control flares, we can't
15:11
control stuff that happens, but health anxiety
15:13
is real. I do have health anxiety. you know i'll
15:16
get caught my finger oh my god i'm gonna get
15:18
sepsis like i'm a real freak about stuff like
15:20
that but i just think if every day i wake up
15:22
and i really think today could be the day i do
15:24
flare up the likelihood of that happening because
15:27
what triggers flare -ups stress and we know we
15:30
kind of think to ourselves if i'm in a constant
15:33
state of stress and i'm really on edge the likelihood
15:36
of me flaring up can be quite high so this is
15:38
why i said from my diagnosis I don't get stressed
15:43
about anything anymore because they say like
15:45
stress, you know, you can have all the stress
15:47
in the world until you get like a health scare.
15:50
Everything leaves and you're only focused on
15:51
your health. Do you know what I mean? So now
15:53
I'm at a point where I'm stuck in traffic. Cool,
15:56
I'll put my music on. I'm sitting in traffic.
15:58
I'm going to be relaxed. Like any bits of stress
16:00
I can eliminate, I will. And again, of course,
16:03
like I really do think about my Crohn's all the
16:05
time because it's here, you know, it's with me.
16:08
But again, I don't want it. this is the point
16:10
i try to make i don't want to try to consume
16:12
me because again i feel like if i did i'd go
16:14
down a really dark path and again i went through
16:17
them three months of feeling the worst i've ever
16:19
felt mentally and physically and it's like i
16:21
really don't want to go back there so yeah again
16:25
a massive flare -up would come but i will take
16:27
it how i need to and like i really just believe
16:29
that i'll have to just try and stay strong and
16:32
positive through it even though being positive
16:34
can be hard when you're in pain but um yeah i
16:38
don't think being overly negative about things
16:40
can help also so i think finding a balance is
16:43
great and i've got great people my friends my
16:46
family everything like that so yeah i don't worry
16:49
about it too much but then when it does come
16:51
out like okay now i'm a bit worried yeah for
16:54
sure so mind gut connection i'm a strong believer
16:58
that that that is real for sure you mentioned
17:02
Yeah, you mentioned like tuning out negativity.
17:04
You mentioned trying to avoid stress. Are those
17:07
two of the main aspects of your outlook on life
17:11
or what else sort of composes that? Yeah, I just
17:16
think that we become our thoughts and like when
17:21
you are thinking so possessively over something
17:24
for so long, you know, we can create things.
17:28
And like I say, Again, I do have health anxiety.
17:31
Like even before I got diagnosed, like if I started
17:34
getting a little pain somewhere, the more I thought
17:36
about that pain in my shoulder, I'm like, oh
17:38
my God, there's something on my shoulder. And
17:39
then I'll search up on Google for days. And before
17:41
I know it, it's like, oh, I've got a tumor in
17:43
my shoulder. It's like, no, you might've just
17:44
gone to the gym and done a bench press and pulled
17:46
it a little bit. So it's what I'm saying. Now
17:49
that might've even unsetted my diagnosis being
17:52
in constant like stress and like paranoia. So
17:55
yeah, now I just really trying to be Zen. I work
17:59
hard, but I don't like it to like cripple me
18:02
with stress because I know that again, I don't
18:04
want to flare up. I'm keeping flares at bay the
18:07
best I can. So yeah. Yeah. The mind to gut connection
18:10
is definitely real. In what other ways has this
18:14
disease changed you as a person? to be a lot
18:17
more a lot more caring so going back to like
18:21
the point we was kind of making earlier like
18:22
there's different severity is to not just chronic
18:25
illnesses but people's threshold with things
18:27
people are more sensitive to things some people
18:29
can um work through things that others can't
18:33
and i always think this is about the comparison
18:35
thing i kind of took myself away from it now
18:37
because Just because I might have done 10 things
18:40
and this person's only done one, doesn't make
18:42
me better and doesn't make them worse. It might
18:45
have took the same amount of energy for that
18:46
person to do one thing than it has me 10. So
18:49
in comparison, we're at the same level. So my
18:52
biggest, I would say, mindset shift is just be
18:57
more compassionate towards people because now
19:00
it's like, I just thought like, if I just keep
19:03
working hard and I'm working and everyone else
19:05
isn't like, I'm gonna like, you know, I'm just
19:06
like, I'm just like crazy. fanatic guy it's like
19:10
oh yeah i guess you are but that doesn't take
19:12
away that someone just getting out of bed is
19:14
just as hard as me doing these 10 tasks and again
19:17
i'm thankful for it like i am it might sound
19:21
a bit crazy i am more thankful than i am not
19:24
to have got this diagnosis because it's made
19:26
me such a better man like i feel like a man now
19:28
before i felt like a boy i just like i'd have
19:31
these mindset things and like i don't know it
19:33
was like a lot of negativity in my head as well
19:35
so now i'm i'm a lot more positive on life and
19:38
um yeah i just think that we all going through
19:42
our hardships there's no competition it's like
19:44
having a chronic illness is just an l anyway
19:48
like before we even start chronic illness is
19:50
just terrible what help is it comparing and being
19:53
like oh mine's worse than yours or this and that
19:55
it's just like no let's just try it'll be the
19:57
best we can with the circumstances that we're
19:59
in so yeah you You obviously are pretty active
20:04
also on social media. And this is actually how
20:05
we connected through TikTok specifically. And
20:08
you chronicle your IBD journey on there as well.
20:14
How did that came to be? Were you that kind of
20:18
a person before your illness as well? Or was
20:22
that something in you that just awakened at one
20:25
point that pushed you to say, hey, you know what?
20:27
I want to share my journey with others. I want
20:29
to share what it's like to live with a chronic
20:30
illness and maybe help people that way. How did
20:34
that come to be? Yeah, so it's quite funny, really.
20:40
i was a musician so i was always making music
20:42
videos like i was always out there i was shooting
20:44
content great so coming coming to like the content
20:46
side of game and things like i'm like i was like
20:49
a veteran i felt fine doing it and then i got
20:51
my diagnosis and for so long in my music i was
20:54
trying to like almost betray myself as this like
20:56
lover boy mr you know charming and stuff like
20:59
that and then when i got my diagnosis or like
21:02
when i started on my symptoms i was like oh i'm
21:04
so embarrassed now like my this whole facade
21:07
thing that i'm creating i'm shitting myself i'm
21:09
23 years old i'm going out and i'm shitting myself
21:12
how can i be this mr you know smooth guy well
21:15
then my friend um charlorente he said you know
21:19
what share your music that's great share the
21:23
content of your music that's great but he said
21:25
let people in because at the end of the day people
21:28
want to know who you are and for so long i was
21:32
like I felt almost embarrassed. Like I was like
21:34
embarrassed about, oh my God, like I now have,
21:37
it's like a disability. You know, I was like,
21:39
I'm now disabled. Like how? Like I was, I was
21:42
fine and now I'm not. So it took me a long time
21:45
to kind of get to terms with the fact that I'm
21:48
still me. I'm still Lewis. Hi, nice to meet you.
21:51
But I do have this thing that's happening inside
21:53
of me. And then when he kind of said that, he
21:56
said, start showing more of that, show more of
21:59
you because. Like this consumes a lot of my life.
22:02
So it's like if people want to get to know me
22:04
This is a part of my life. You're like my like
22:07
my music you might think I'm funny You might
22:09
think I'm motivational all these good things
22:10
But also I have a chronic illness and people
22:14
out there do too and the amount of messages that
22:16
I get is like Overwhelming like I never thought
22:18
in my head that even like the funny videos that
22:21
I do people message me saying like this has just
22:24
got me through my day and I'm like the funny
22:26
video and they're like yeah because it's showing
22:27
a lightheartedness but it's also showing awareness
22:30
I'm like oh right great but I didn't think about
22:32
it like that I was just putting it out so it's
22:34
like this is how I feel so yeah without my friend
22:37
just saying be a bit more open and just really
22:39
like let people in because so the point I'm trying
22:43
to get is I'm not embarrassed anymore I'm not
22:45
trying to hide anything and this is what I'm
22:47
saying this is another tick box for a bonus for
22:49
me getting diagnosed because it's like it's made
22:52
me accept who I am for who I am and when before
22:56
getting diagnosed as well I was I bottled everything
22:59
up and like I said I was like quite like an angry
23:01
person I don't know why I just had this like
23:03
thing against the world but now like I realize
23:05
I am a bit more emotional than I thought and
23:07
I do believe I have I have a form of anxiety
23:10
and it's because I bottled up for so long I didn't
23:12
know this but it's like it's all just like cracked
23:15
my shell and now I'm like coming out of it and
23:18
now I'm you know people are seeing me for how
23:20
I am and I'm actually helping people which I
23:23
don't know. To me, it's still crazy, but yeah.
23:25
So keyword helping people. I like that because
23:27
you're right. I mean, so many people out there
23:29
are not as comfortable as you or I, you know,
23:33
in sharing life with IBD. Yeah. But it's great
23:38
that they do find the courage to reach out based
23:41
on what they see, based on what they hear, based
23:44
on what it is that we're doing. If we start with
23:47
people who have been recently diagnosed, Crohn's
23:50
or colitis, doesn't matter. They kind of feel
23:52
lost. They struggle, right? Just starting treatments.
23:57
Based on what you've experienced, based on maybe
23:59
the questions that you have been asked as well
24:01
through social media, what kind of advice would
24:04
you have for those kind of people? What kind
24:05
of words of wisdom, in a sense, would you have
24:08
for somebody who is just starting out on their
24:11
IBD journey? a new normal that you're not used
24:18
to and that doing things that you may have done
24:22
before may not as be may not be as easy now and
24:26
you know like in my example it's like i still
24:29
can roughly do the same but just because i'm
24:32
doing the same doesn't mean that i'm feeling
24:34
it any less like i feel like i say i get tired
24:37
a lot more need a lot more rest you know it's
24:40
like the wear and tear is like a lot more uh
24:43
prevalent now but yeah i would say that just
24:45
trying to accept firstly like the point earlier
24:49
that we made it's like i was embarrassed about
24:52
it i was like oh no i can't let any but like
24:54
i i hid that i even had it for like the first
24:56
three months because i was like i don't want
24:57
anybody to notice it's embarrassing and but the
25:01
more and the more and quickly you do just accept
25:04
that you know you do now have something wrong
25:07
with you like and the happier you'll be because
25:11
again you just don't want to suppress this emotion
25:12
because a it's hard living with it anyway but
25:15
trying to hide it as well will make it just as
25:17
bad and then yeah i would i would say just accepting
25:20
that okay this is the new me and now you're gonna
25:23
have to navigate life a bit differently and things
25:25
might be harder but again like i said earlier
25:28
harder doesn't mean impossible so there is a
25:30
light at the end of the tunnel it's just that
25:32
in the moment it can be a bit daunting but yeah
25:35
that's what i'd say And you mentioned you had
25:39
really strong positive support from the people
25:42
around you. I'm assuming, you know, family and
25:44
friends. So if we turn it now to the people that
25:50
know people with IBD, right? People, you know,
25:54
husbands, boyfriends, girlfriends, partners,
25:57
friends, family members. What would your advice
26:01
be to those people who are... loving and caring
26:06
for someone who has been diagnosed with colitis
26:10
or Crohn's, what's their best approach if they
26:13
come to you and say, hey, so I got this person.
26:15
I love that person very much. How do I help him?
26:18
How do I support that person? Firstly, compassion.
26:22
Just be so compassionate towards them because
26:25
you are so isolated in that moment. From your
26:29
diagnosis, that person now. we are only here
26:34
once we have one life and i've never experienced
26:38
this before you've never experienced it before
26:40
until you got it it's our first time right so
26:43
it's so scary it's so like confusing it's so
26:46
isolating so i would i'd literally just say be
26:49
compassionate and understand that even if we
26:55
look okay most of the times we're not and like
26:59
a lot of people like We can't be that bad if
27:01
you go to gym. It's like, what? I don't even
27:04
get that argument. I went to gym feeling like
27:08
shit, but I didn't want to just sit in bed because
27:11
that made me feel probably even worse. So I went
27:13
to gym and it made me feel better. But it's just
27:15
like people don't understand the difference between
27:20
looking okay and actually being okay. you know
27:24
90 % of the time I just look okay but there's
27:27
something inside me or like when I'm in public
27:29
and I'm like I can feel like the itch is starting
27:31
like I start itching and I get a little bit and
27:33
I'm just like we are really fucking strong people
27:37
because a lot of people would crumble under the
27:41
pressure that we do the pain the anxiety the
27:44
isolation and I think that you know people just
27:47
with a chronic illness in general are like the
27:48
strongest people ever but a lot of people can
27:51
look at them as weak as lazy and stuff like this
27:53
but it's like you wouldn't understand so i don't
27:55
even argue with people anymore who don't get
27:57
it it's like we're not lazy you know we do want
28:00
to do things if our body allows it but sometimes
28:02
it doesn't so yeah just be more compassionate
28:05
be more compassionate compassion being the key
28:08
word and i think that's the best starting point
28:10
as well for somebody to understand and i always
28:12
say like be compassionate educate yourself a
28:15
little bit as well you know don't go down a weird
28:17
spiral and And then I always think one of the
28:21
biggest ones for me was always that let them
28:25
know you're there, but don't impose yourself
28:27
either, right? Because we will come to you once
28:31
we feel better, once we are ready, if we need
28:33
or when we need something, we will be there.
28:35
And I think, you know, it ties into exactly what
28:37
you said. If you as the person practice the compassion,
28:40
you will understand all that, you know, and you'll
28:43
get it very quickly. So yeah, that's a good point.
28:45
That's a good point. So obviously you've... interact
28:49
with a lot of people you know on social media
28:51
online you know people who have IBD might be
28:54
affected by it you know what kind of common misconceptions
28:58
about like colitis or Crohn's have you come across
29:02
so what are your main ones that you kind of like
29:05
keep seeing or that sometimes frustrate you or
29:08
anger you even ah there's a few um I would say
29:14
the biggest misconception is the IBD is literally
29:22
just you not being able to hold your poop and
29:25
it's like that's one element great but there's
29:30
so much more like and when if I if I if I tell
29:35
someone I have IBD and I oh what's that I kind
29:39
of just like, I don't want to know what to say
29:41
because it's like, I don't want to downplay it,
29:43
but I don't want to like overcomplicate. So I'm
29:45
trying to find like a nice way I can kind of
29:47
put it where they'll understand it, but they're
29:50
not just come away from the conversation like,
29:52
oh, just like IBS then. It's like, oh, it's,
29:55
you know, IBS by itself is hard. I know people
29:59
with it. It's not a nice thing to go through,
30:02
but then it's like for you to just say, oh, so
30:05
it's like IBS. It's like, I guess. it's saying
30:08
that we both poo ourselves i guess but like the
30:12
problems that come from having ibd to ibs it's
30:15
like completely different ball game so but then
30:18
again that's just people being a bit uneducated
30:20
and again this is why it's good to raise awareness
30:23
so people understand when i say oh by the way
30:26
i have like ibd you go oh shit you know you've
30:29
got ibd i bet that's tough but then for you to
30:32
just go oh so it's like you're kind of pooing
30:34
yourself it's like no like that's like the worst
30:37
thing you could ever say to somebody so yeah
30:40
that's definitely an element but it's not a whole
30:42
story it's just like a chapter it's not the whole
30:44
book so yeah yeah yeah no i think it's a really
30:47
good point because it actually now now that i
30:51
hear you speak it when i explain it to people
30:54
Obviously, I try to keep the definition pretty
30:56
short and pretty easy. You know, I don't want
30:58
to get into too medical or anything. But it's
31:00
true that this sort of running to the toilet
31:03
or the shitting part really takes center stage.
31:07
But it is so much more. It is fatigue. It is
31:10
abdominal pain. It is lack of energy, right?
31:13
Like it is mental struggles, right? And all of
31:16
that is IBD. Even though the B stands for bowel,
31:20
yeah, sure, you know, I mean, we might be on
31:22
the toilet 20 times a day when we're flaring,
31:24
but there's just so much more going on that is
31:28
connected to, yeah, the shitting part, right?
31:32
So as we kind of get close to wrapping up here
31:37
and we sort of covered the past, we covered the
31:39
present, you know, we want to, you know... Look
31:41
out for the future as well. But I think, you
31:43
know, we cannot really go into the future without
31:46
properly understanding the present and also the
31:48
past. So for like a final moment of introspection,
31:52
I would love to hear from you if you could go
31:55
back today to that day that you were diagnosed.
31:59
And even though back then you kind of already
32:00
knew what colitis sort of was, what would you
32:03
tell yourself, you know, on that day that you
32:07
came out of the colonoscopy and your doctor told
32:10
you have this? I think it would bleed into like
32:14
the point that I kind of made earlier. It was.
32:18
Your normal now is a lot different to what your
32:22
normal was. And yeah, I thought I was just going
32:27
to hop out there and it's like, you know, run
32:29
into the sunset, you know. But then I quickly
32:33
learned in like the first month I was like, damn,
32:36
like I'm usually doing this stuff and I'm. have
32:39
more energy after but now it's like i just don't
32:42
i just generally don't have the energy so i would
32:45
just say that the the new normal that you're
32:50
gonna face is something you're gonna have to
32:52
learn to adapt to and navigate instead of just
32:55
like trying to keep up with the old normal that
32:59
you used to have and um yeah again understanding
33:02
your body a lot more as well like when your body
33:04
talks listen and that's what i didn't do for
33:07
the first 22 23 years of my life i was just on
33:10
go go go go disregard everything i'm a you know
33:14
i need to just stay focused but now it's like
33:17
if i feel that flare coming on i'ma just sit
33:19
back and i'ma just let whatever needs to happen
33:22
happen without trying to push through it because
33:25
again it's not going to end well so accepting
33:27
your new normal is is the is the conclusion i
33:30
guess My final question for you is a difficult
33:33
one. And I insist on asking it because so far,
33:38
100 % of the time when I've asked it, there's
33:40
always been a sense of hope and optimism tied
33:44
to it. And I always want to end with hope and
33:46
optimism. So I'm in remission. You're in remission.
33:50
So we're lucky that we're feeling good. But we
33:53
are not cured, right? This is sleeping right
33:57
now, right? Do you think that in our lifetime
33:59
we will see a cure to IBD? I think it's a very
34:04
complex disease. But a lot of complex diseases
34:12
100 years ago is a tablet and it's gone today.
34:16
So I think in our lifetime, yes. I don't think
34:25
it's going to be very, very soon in like the
34:27
next five years. But I think if we're maybe talking
34:31
20, 30, 20, 30 years, I think that. Yeah, again,
34:37
with how quickly medicine is advancing. Hey,
34:41
I am going to worry. I'm just waiting for the
34:43
day to go. That's cured. Give me some, you know,
34:46
and I'll be happy. But yeah, I do think so. Yeah,
34:49
I definitely do. Yeah. Listen, 20, 30 years,
34:52
that's a pretty positive outlook. So I'll take
34:54
it. So I'm definitely game, definitely game.
34:58
Luz, thanks so much for sharing your journey
35:01
and for spreading the positivity. I think some
35:04
of the insights about how you see your life now,
35:07
as opposed to before your diagnosis, I think
35:09
that's really inspiring. And I really hope that
35:10
I can speak to a lot of people as well. From
35:12
my end, I can just wish you the best. And I really
35:15
hope that you keep doing what you're doing. I
35:18
would say if you can just answer one question,
35:21
you know, to somebody who's struggling per day
35:23
and or somebody, you know, messages you and says,
35:26
thank you, that made my day. That is really part
35:29
of our purpose. And I think that's more than
35:33
enough. So keep that up. And I wish you nothing
35:36
but the best in your continuing journey with
35:38
Crohn's and colitis. Yeah, I just want to say
35:42
as well, thank you so much for having me as well.
35:43
I think what you're doing is amazing. I think
35:46
awareness is so important in today's age with
35:48
a lot of uneducated, borderline ignorant people
35:53
sometimes. So, yeah, I think what you're doing
35:55
is like God's work. And again, if I can be any
35:58
help towards that, you know, I'm definitely down
36:00
for that. And hopefully the cure is coming. And
36:05
while we're waiting, this raising awareness and
36:08
advocating for ourselves and others, that's the
36:11
best thing we can do. And that's what we should
36:12
be doing. So thanks so much, Louis, again. Thank
36:15
you. Thank you. Thank you. That's it for today's
36:18
episode of Kaleidos Unfiltered. I'm Frank Tabering.
36:22
And if this hit home or hit your gut, do us a
36:25
favor. Subscribe to the show and follow us at
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Threads, TikTok, and Reddit. We'll see you soon
36:34
for more inspiring stories from the bathroom
36:37
floor.