Latest / Crohn's & Colitis Unfiltered / Ulcerative colitis, surgery and a stoma: Ant’s life with a bag

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Ulcerative colitis, surgery and a stoma: Ant’s life with a bag · Crohn's & Colitis Unfiltered

0:02
Honestly, I wish surgery was on the table much
0:05
earlier because my quality of life has, it's
0:09
just been complete 180, right? Like, and I kind
0:14
of wish that was something that was talked through
0:16
in more detail. And it might have been that my
0:19
consultant at the time could have said, look,
0:21
these are all of the treatment options available
0:23
for you. Obviously, as a young man. Or young
0:27
individuals who are out there who are maybe looking
0:29
at surgery. It is a big thing. It is life -changing.
0:32
And I think that's quite key. It is life -changing.
0:34
But my life changed for the better. So much better.
0:38
I wish that had been put on the table earlier
0:41
and sort of discussed through. This is Ent, who
0:44
got diagnosed with ulcerative colitis at age
0:46
19 in London. After struggling with IBD for years,
0:50
Ent ultimately made the call to have surgery.
0:53
Now living with a stoma, He's on a mission to
0:55
challenge the fear and stigma around life with
0:58
an ostomy. Today, he's telling us all about his
1:01
colitis journey. This is Talking S***, presented
1:04
by Colitis Unfiltered. My name is Frank Tavering,
1:07
and welcome to the show. Thanks, Frank. Absolute
1:10
pleasure to be here. Yeah, really looking forward
1:13
to talking s***, as you said. So, yeah, it'll
1:15
be great. So then let's talk shit and let's talk
1:18
shit straight from the beginning. I always say,
1:20
you know, the first question that I typically
1:21
have, because why not start at the beginning?
1:24
And that is symptoms, how your IBD journey started.
1:29
Tell me a little bit about what that moment was
1:31
like for you when you noticed that, hey, something
1:33
is definitely wrong here. Wow, this is, well,
1:38
I'll try and paint a picture. This was back in
1:40
2008. So for some listeners, this was well before
1:43
social media was a thing. Like Instagram wasn't
1:46
really around. TikTok was just the noise that
1:50
your clock made on the wall. It wasn't a thing
1:51
at all. So back then, my symptoms were just really
1:58
bad diarrhea to start with. I remember just sitting
2:01
there being like, this isn't normal. Every time
2:04
I go to the bathroom, I'm like... This is not
2:06
great. And then the frequency just surged. I
2:09
was going like a couple of times a day and then
2:10
it surged to like 10, 15 times a day. Then passing
2:14
blood came. Then the pain came. So, yeah, just
2:18
those first sort of moments, if you will, I remember
2:22
feeling like really worried, really quite frightened,
2:25
like something's really not right. Yeah. And
2:28
then going to doctors and they were just like,
2:30
oh, yeah. it'll be fine. Like take your standard
2:33
over the counter medication. You'll be okay.
2:35
Um, yeah. And then fast forward to 2020, have
2:39
my large colon removed. And now I'm, you know,
2:42
publicly talking about shit and showing my, my
2:45
stoma bag all the time. So, so yeah, that's,
2:48
that's interesting. You said, so you went to
2:50
the doctors and they say, take over. the counter
2:52
medication was it just like a regular like a
2:55
regular doctor did you really go to a gi like
2:58
how did that evolve because 2008 like yes social
3:00
media was not around but ibd was around right
3:03
or at least you think so so how did that develop
3:06
and evolve so it was uh i was at university at
3:10
the time um and i just started as well and i
3:13
wasn't feeling great and then it was sort of
3:17
christmas time where i Kept going to the university
3:21
doctor, which is like a pharmacist. And they
3:24
were like, yeah, have some just standard, like
3:28
we call it Imodium in the UK, like just standard
3:30
medication. And hopefully that should clear.
3:34
It's just a bad bout of diarrhea. Plus being
3:36
a university student, my diet wasn't exactly
3:39
great, probably too much alcohol and partying.
3:42
So I thought that's what it will be. It'll calm
3:43
down. And then it went on and on and on. When
3:46
I got to, I went home in December for Christmas
3:49
time and I went to my local GP where I live,
3:53
like a proper doctor. And he said the same thing,
3:56
like, look, let's just take it step by step.
3:59
But everything seems to be okay. I then came
4:02
back in Easter time and went back to my GP and
4:07
said, nothing's changed. And they were like,
4:09
right, we'll do some stool samples, we'll do
4:11
some tests. But yeah, after doing all those tests,
4:14
they said nothing was wrong. And that was a bit
4:16
for me that I was like, this doesn't make sense.
4:19
You can see, you can clearly see something's
4:21
wrong. Like, you know, I'm in pain. I'm passing
4:23
blood. This can't be normal results. And they
4:26
said, look, there's nothing more. We can either
4:29
look at changing your food or your diet, like
4:32
maybe tweaking that, but there's not really much
4:35
else we could do. We can try and refer you to
4:37
a specialist, but the waiting list will be a
4:38
very long time. And I remember just chatting
4:40
to my family about it and they said, look, just
4:41
let's go private. And I had... an initial consultation
4:46
with a doctor who just sort of talked me through
4:48
what the procedures would be then had a colonoscopy
4:50
and literally in after the colonoscopy they were
4:52
like yeah you've got severe ulcerative colitis
4:54
and i was like cool what's that hey what what
4:59
is this um yeah and my doctor just said look
5:02
we're going to put you on some medication and
5:05
we'll give you some prednisolone steroids to
5:09
calm the inflammation, then we'll look at, you
5:11
know, long -term treatment. And I remember being
5:13
like, I was 19 at the time. I was like, yeah,
5:16
fine, whatever, no issue. I just saw it as, as
5:19
you kind of do when you're a teen, like, you
5:21
know, a young adult. I'm invincible, it doesn't
5:23
matter. And I think looking back on it now and
5:26
really reflecting, I didn't really take on like
5:29
the enormity of this is a lifelong condition.
5:31
Like this isn't going to go away. Even then when
5:35
someone said it was chronic, I assumed that was
5:37
like, oh, that just means it's more painful than.
5:39
acute if that makes sense um so yeah that was
5:43
that was it that was the start of the very long
5:45
journey that we've been on ever since so there's
5:48
there's definitely let's say at least a period
5:51
of months right that elapsed between you know
5:53
your first symptoms and the first conoscopy right
5:55
based on sort of like your timeline just you
5:58
know as a 19 year old you know normally what's
6:00
going on though like how did you how did you
6:02
navigate this pain because obviously symptoms
6:04
during those months didn't stop right it's just
6:06
a continuous sort of suffering like what was
6:09
that like for you especially at 19 as well oh
6:12
yeah and like i just started university trying
6:14
to make new friends going to my lectures and
6:16
stuff i think it's like most things right when
6:18
most people in this space will just put brave
6:21
face on and then just power through and that's
6:24
just what i did i remember There were a couple
6:27
of times where like, you know, honestly, I was
6:29
with friends. I shat myself a couple of times,
6:31
like genuinely was like, oh, sorry, guys, I'm
6:34
just just going to go. And again, it's not through
6:39
like design or anything like that. It's just
6:41
like I'm not feeling like, oh, my God, what's
6:43
happening? And then, you know, you run off. But
6:45
that was it. Just put brave face on and then
6:48
hopefully things will be OK. Because I remember
6:52
having exams as well. This is like fast forwarding
6:55
a little bit to the summer when I was doing my
6:57
first, first year exams. And I had really, I
6:59
had such a bad IBD flare. Nothing was working.
7:02
And I remember just being like, I can't do my
7:05
exam tomorrow. Like I can't do it. I'm in so
7:08
much pain. And just being like, it'll be all
7:12
right. It will be all right. And like having
7:14
to like manage my own emotions a bit with it
7:16
was challenging, but it was always, I don't know.
7:20
It was always like. this is just part of that
7:21
journey right it will get better i've just got
7:23
to you know navigate this at the moment and then
7:26
fingers crossed things improve yeah so you definitely
7:29
kept a positive mindset the way it seems and
7:32
then because a lot of ibd flare -ups diagnoses
7:35
you know for a lot of people life sort of kind
7:37
of comes to a halt a little bit based on the
7:38
severity of the disease right but you had university
7:41
so you power through now obviously we want to
7:44
get to the point of where you are today and that
7:46
includes surgery so Take us maybe to the next
7:49
step now, which is diagnosis there. You know
7:53
what ulcerative colitis is up to the point where
7:56
I guess you've been told, hey, it's time for
7:59
surgery. What kind of treatments were you on?
8:01
What time elapsed? And then ultimately, what
8:04
led to you having to have surgery? I was in remission
8:07
for quite a long time with the mesalazine. I
8:10
had like one tablet I would take a day. And I
8:14
was like, right, I'll have that forever. And
8:15
I was like, perfect. This is great. Life's easy.
8:18
I can do what I want. It was all good. And I
8:20
remember being on the treatment and it took six
8:22
months for it to really start working. And then
8:26
I remember being, at the time I worked in Sainsbury's
8:29
and I was closing up the shop with one of the
8:31
managers and I went to the toilet and I remember
8:33
having just a normal shit. And I was like, oh
8:37
my God. And I text my family and text my mates
8:39
being like. Best feeling ever. Oh my, honestly,
8:41
best feeling ever. Could not be happier. And
8:44
then from there, it was just like. I'd have periods
8:48
of normal remission. It'd be a couple of months
8:50
and then I'd have a flare up and then I'd go
8:53
back to the GP and they say, right, have some
8:55
more steroids. And it was kind of just that constant
8:57
balancing act of like fine tuning is the way
9:00
I looked at it. It was like my dosage always
9:02
needs to be tuned and then we'll see where it
9:04
gets to. I then did, from there we moved on to
9:10
azathioprine because everything stopped working.
9:13
And I remember having. conversation with my consultant
9:15
then and he just said like these are quite heavy
9:17
drugs these are drugs that you give to people
9:19
that are having like organ transplants like he
9:23
said very similar to people have like kidney
9:25
transplants and i was like oh wow that's uh so
9:29
i've got to take this forever he was like yes
9:30
i remember sitting the thing like this is getting
9:32
more serious and he just said yeah we'll take
9:35
the medication again we'll find your dosages
9:37
and it was just next step literally next step
9:40
up in the ladder if you will before surgery fine
9:43
tune it periods of remission then i moved on
9:46
to cyclosporine which was another one and i remember
9:52
getting like just really weird side effects like
9:55
my eyes would just dehydrate like gel had really
9:58
sore eyes all the time my hands would shake uh
10:01
hair started falling out so i was like look i'm
10:03
gonna go change these and then the doctor said
10:06
if you're not getting on with these we can look
10:08
at other things like I know Vendelizolab or whatever
10:11
it's called, methotrexate and all these other
10:14
things. And they decided to go into like anti
10:16
-cancer categories. And I was like, this isn't
10:19
great. And then we literally hit a brick wall.
10:23
My doctor just said, look, we don't really know.
10:26
Let's see what other drugs come out. So he put
10:28
me back on azathioprine and was like, let's just
10:30
play the waiting game. And I said, enough's enough.
10:33
I want to, what's the point? The solution here
10:36
is. Get rid of your colon. And then I don't have
10:41
to be on these drugs. I don't have to have this
10:43
way of life. I don't have to have the poor quality
10:47
of life that I have. Surely that's the next logical
10:49
step, right? And he was like, yeah, we can do
10:52
that. He's like, but you will elect surgery.
10:55
He's like, you're not unwell enough to have surgery.
10:59
And then again, I sat there going, but what do
11:01
you mean? Like I'm so unwell because I'm going
11:05
to the bathroom like 30 times a day. None of
11:07
these medications are working. We're now going
11:09
back down to the drugs that weren't working.
11:12
Like it doesn't make sense to me. And he's like,
11:14
look, this is just what we can do. We can manage
11:15
your symptoms as best we can until we do surgery
11:18
or we look at all the other drugs that we can
11:20
try. It's up to you. So yeah, I chose let's go
11:24
with surgery because I just want to get it done.
11:26
And it was initially we can have this in. Maybe
11:30
like three months or so. So you've only got to
11:32
wait like 12 weeks. You're on the waiting list.
11:34
I was like, perfect. Okay. Not too long. Then
11:38
it turned into over a year. I think it was like
11:41
13, 13 months or so. Because I'm not from a,
11:46
I'm not an emergency case, right? And there are
11:50
other people who need to have that surgery who
11:52
may have to have like. preventative surgery for
11:55
cancer because they may have to have their bowel
11:57
removed so every time I'm on this list I'm getting
12:00
to the top here's your surgery date great three
12:02
weeks time start going through all the prep drop
12:05
back down it's moved six weeks up the ladder
12:08
drop back down and it was just that constant
12:10
cycle for 13 months until finally had surgery
12:14
I want to say the 12th or 13th of February I
12:17
can't remember the date exactly I should do but
12:19
12th or 13th February 2020. The word surgery
12:24
has sort of this stigma, and I think for a reason
12:27
attached to it, that, you know, this is the last
12:30
resort. This is what nobody wants, you know,
12:32
or this is what people are afraid of the most,
12:34
especially, you know, people who get diagnosed
12:37
with IBD, who actually find out a little bit
12:39
more about Crohn's, about colitis, obviously,
12:41
or if the doctor does a really great job sort
12:43
of at explaining, you know, the different treatment
12:45
options and, you know, climbing the ladder. And
12:48
let's face it, nobody really wants to get to
12:50
surgery, right? Unless they have to, or unless
12:51
their lifestyle is, their life is just so, so,
12:54
so, so bad that that's the only option left for
12:57
them to reclaim their life. So what would you
13:00
kind of tell the people? who might face surgery
13:05
in the future, right? As somebody who has experienced
13:08
it. And that's my first part of the question.
13:10
My second part of the question is how did you
13:12
deal with that? Did you have any fear attached
13:14
to it? Any sort of, you know, uncertainty of
13:17
what was to come? Because, you know, going to
13:20
a doctor and saying, hey, I want surgery is very
13:22
much different from the doctor coming to you
13:24
and saying, hey, we really need to do the surgery
13:27
now. Otherwise, you know, who knows what may
13:30
happen. Yeah, 100%. So, To the first point, people
13:35
who are facing surgery, I think to your point
13:39
you said earlier, doctors usually introduce it
13:42
as this is the last resort. And honestly, I wish
13:46
surgery was on the table much earlier because
13:49
my quality of life has, it's just been complete
13:53
180, right? Like, and I kind of wish that was
13:58
something that was talked through in a more detail.
14:00
And it might've been that my consultant at the
14:02
time could have said, look, These are all of
14:05
the treatment options available for you. Obviously,
14:07
as a young man or young individuals who are out
14:10
there who are having, you know, maybe looking
14:12
at surgery, like it is a big thing. It is life
14:14
changing. And I think that's quite key. It is
14:16
life changing. But my life changed for the better,
14:19
so much better. I wish that had been put on the
14:22
table earlier and sort of discussed through.
14:25
One of my consultants said it as soon as I stopped
14:28
azathioprine and started looking at other drugs.
14:30
He was like, we can do it. he was like but i
14:33
won't force you and he was the first doctor was
14:35
like we can do it and i remember sitting there
14:37
at the time just being like oh that seems a bit
14:40
scary i won't do that but there wasn't at that
14:44
point there wasn't many people on social media
14:47
necessarily talking about surgery and things
14:48
or like not as many that i saw now there's okay
14:53
i'm not a podcast with you john i mean so there's
14:56
so many more people talking about it which is
14:57
amazing i've seen that transition firsthand So
15:01
I think to people who are facing surgery, really
15:04
have a conversation about it, speak to others
15:07
who have gone through it, and that will hopefully
15:09
alleviate some of your fears by hopefully having
15:11
this conversation and listening to this podcast
15:14
may also give you that. And secondly, one thing
15:18
that helped me, which then comes to your second
15:20
part of the question, is what did I do? Because
15:23
I elected, I had time to mentally prepare, whereas
15:27
if you are an emergency patient, you don't. necessarily
15:30
have that and that's where the exception your
15:32
body and stuff can be very challenging i bought
15:35
some test kits from some stone supplies so in
15:40
the uk you can actually get them for free but
15:42
i messaged some some companies and said do you
15:44
have any trial kits because i'm due to have surgery
15:47
and i want to essentially get familiar with what
15:50
my body is going to look and feel like so i got
15:53
a couple they sent me some i just put a stoma
15:55
bag on for the day filled up with water walked
15:58
around, like went to the gym with it on. And
16:02
I was just like, this is what my life's going
16:04
to be like. So I was like, okay, like it's not
16:07
as, the first time I saw a stoma bag, I was like,
16:11
oh, it's going to be like wearing a nappy, isn't
16:13
it? Like, it's going to be so embarrassing. Not
16:15
at all. And I was like, it's going to smell,
16:17
doesn't smell. Like you can't tell that I've
16:19
got a bag unless I physically show you. And it's,
16:22
I think those are my biggest concerns. And then
16:26
body image. what am i going to look like fortunately
16:29
like the bags i use and i haven't prepared this
16:32
but the bags i use are black so they look cool
16:36
right and that's why i'm like oh that's not too
16:39
bad and that sort of really helped mentally for
16:41
me get me in a place where i was like this is
16:44
happening i've chosen to do this this seems to
16:47
be like the right decision and i'll never forget
16:49
waking up after surgery your your stoma For those
16:54
of you, if you're going to get one or have one,
16:57
like it's huge, it's ginormous. And that is like,
17:00
whoa, what's that? And then you've got a big
17:03
clear bag. Obviously that's for doctors to look
17:05
at. It shrinks down. But I remember just looking
17:08
at it being like, oh my God, this is crazy. But
17:11
I wasn't in pain. And like I was in hospital
17:15
for 19 days, I think it was in total, because
17:18
my stoma fell asleep and then we had to wake
17:20
up and it was this sort of cycle. But I had no
17:24
urgency and I couldn't get my head around that
17:27
because for like, at that time I was 30. So for
17:30
a third of my adult life, a third of my life,
17:33
I was like, I have to run away and go to the
17:36
toilet. And I wasn't, I was just sat there like,
17:39
okay, well, this is working. I can't feel really
17:42
feel this. I've noticed the bags filling up,
17:44
but, but that's it. And that was the, that was
17:46
such a weird transition. And even now, like I
17:50
can't. I can't remember like that sensation,
17:55
that pain of having to run off to the toilet
17:57
all the time, but that was my, my everyday. So
17:59
yeah, so that massively helped. And then connecting
18:02
with other people. There's a few people I reached
18:03
out to who had stoma bags and I was like, what's
18:06
it like? And they just said, honestly, my life
18:10
is so much better. They're like, you'll get like
18:12
the first couple of weeks, obviously is going
18:14
to be, it's major surgery. You'll have hiccups,
18:16
you'll have like teething problems, but honestly
18:19
you will be. so much better off and i'm really
18:23
glad i listened to them because well i am so
18:27
there you go sure sure that that's that's really
18:31
great so in a sense rehearsing really did help
18:35
you prepare it's a very interesting story i mean
18:37
this is the first time that i you know talked
18:40
to someone who literally like you said you know
18:41
ordered a trial kit and rehearsed living with
18:43
it before actually experiencing it So rehearsal
18:46
can work, definitely. And then yet, you know,
18:48
you wake up, you see the stoma for the first
18:49
time, you're like, whoa, you know, it still obviously
18:51
takes a little bit of, you know, adjusting and
18:53
sort of overcoming the change, at least visually.
18:57
Now, do you consider yourself cured? Oh, what
19:02
a question. No, yes and no. I still have colitis.
19:08
It's still in my body. So I had a subcolectomy,
19:12
so I still have my rectum. I have to monitor
19:16
that because that's where my colitis was active.
19:20
So it could return. I know in a couple of years,
19:23
I'm going to have to have that removed because
19:27
A, it's a cancer risk because I've got an organ
19:29
or part of my organ that isn't working. And B,
19:32
if the colitis flares up in that area again,
19:36
not really. But for the main. It's interesting.
19:44
I'd say yes, because I haven't got any real symptoms
19:48
at this time, but I've had all the side effects
19:51
of years and years and years of taking very strong
19:54
medication. So I guess it is. Does that make
19:59
sense? Absolutely. And I asked the question because
20:02
typically... it's not really easy to say, yes,
20:07
I'm cured, right? And surgery is actually not
20:10
always the cure. I mean, yes, we're talking about
20:12
colitis, but a lot of Crohn's patients that I
20:14
talk to as well, then typically it's like, no,
20:16
you know, it can still be there, you know, even
20:19
though they might live with a stoma. So, but
20:22
you know, definitely, I think you put it very
20:24
well. So it's no secret, you mentioned it earlier
20:27
as well, you're extremely... active online as
20:30
well on social media. And that's part of your
20:32
efforts to raise awareness, but also to share
20:35
your story. And I think sharing our stories is
20:38
really the core, the heart of awareness. In one
20:42
of your posts, I don't know exactly if you remember
20:44
what it was, but in one of your posts, you wrote
20:47
or you said in a kind of quote, some days are
20:50
easier and some are harder. I would love for
20:53
you to tell me about the hard ones. Yeah, it's
20:58
interesting because I try to, as best I can,
21:02
portray a very positive attitude and mindset
21:05
just generally towards things. So even with what
21:07
I post, I want to show that even after life -changing
21:11
surgery, battling chronic conditions, you can
21:14
still have an amazing life, right? And I think
21:16
that's, for me, that's always going to be the
21:18
important part because there will be people out
21:20
there that will be struggling. The days that
21:24
I struggle with, I'll be brutally honest, I hate
21:27
my stoma sometimes. So that's why I'm like, am
21:30
I cured? That's another part of it. I'd reframe
21:33
cured to have I got my quality of life back?
21:36
And the answer is yes. I've now got a different
21:39
route that I've taken to get back to where I
21:42
was before. But there are days where I'll get
21:47
really sore skin. You do the best things you
21:49
can. I'll get sore skin and I'll itch my skin.
21:52
And it's like, oh, this is crazy. Blockages.
21:56
So for those of you that don't know, you do have
21:58
to be careful what food you eat. You can't just
22:00
shove it all in. And I've had three or four blockable,
22:06
I think, but yeah, about three or four major
22:07
blockages in my life. So I've been hospitalized
22:10
because of it. I sometimes just hate. how my
22:17
bag sits. So for example, when your bag is full,
22:23
you can tell you've got a big bag, right? You
22:25
can just tell. And you might be walking somewhere
22:28
and the wind is blowing at you and it just looks
22:31
like you've got this massive lump just sticking
22:33
out of your top, right? And sometimes my stoma,
22:36
like, although I love it, it's quite a long stoma.
22:40
So it's about the size of my thumb, just underneath,
22:43
right? And I see other people who've got stomas
22:46
and they're like, oh, theirs is smaller and flatter.
22:48
Like I wish mine was like that. And there's just
22:51
times where I'm like, sometimes I'm just very
22:53
aware that I've got a bag. And those are the
22:58
challenging days because I sit there going, I'm
23:02
not cured. Do you know what I mean? That's, that's
23:03
my point. I'm not, I still got this. So lots
23:07
of people ask me normally like. Do you consider
23:10
yourself disabled? And that's something that's
23:11
quite pertinent in sort of from our side. And
23:15
I'll say yes, because I've got this big medical
23:17
device that I have to physically wear all the
23:18
time. And those are days where I'm like, although
23:22
surgery has helped me, I wish this wasn't the
23:26
only way to get to where I am now. So yeah, that's
23:30
it. So you very bluntly said some days I hate
23:35
my stoma. But it's with you. It's with you for
23:39
life. So how do you mentally make peace with
23:43
it? How do you make peace with your stoma? I
23:47
mean, to be fair, it's like anything. I'm just
23:50
frustrated. It's emotional. So I'll end up just
23:54
feeling like, look, I'm annoyed about something.
23:56
It'll be fine. I'll go away. And then I'll take
24:02
my mind off it, go and do something, whatever.
24:04
And I... and then forget why i was angry do you
24:08
know what i mean like it is one of those things
24:10
it's more of an emotive reaction um because i'll
24:12
then go and do something like i'll go to the
24:14
gym we'll go for a walk or do whatever i'm not
24:17
having to plan my whole day or my activity around
24:20
how close is the nearest toilet i think that's
24:23
the hardest thing what i say the hardest thing
24:25
the solution to those harder days is where am
24:30
i now where was i looking and i'm being reflective
24:33
and looking back to go There were days where
24:36
I couldn't, like literally I couldn't stand,
24:38
like I'd just have to pass out and go to sleep
24:41
to I'm deciding what I want to eat and I'm going
24:44
to go cook dinner or I'm going to go to the gym
24:45
and all these things I couldn't really do before
24:47
surgery. So yeah, there were days where I'm like,
24:50
oh, that bottom line is it's, yeah, saved me
24:56
from so much worse. I would like to know from
24:59
you, especially since you've... had the diagnosis
25:02
at 19 then a surgery around like the age of 30
25:05
you know now you've had it a couple of years
25:06
you know how has colitis and your ostomy as well
25:11
changed you as a person before even having like
25:15
stoma or even even being diagnosed with colitis
25:19
like i was just a normal happy -go -lucky individual
25:23
couldn't care less i'll just do anything try
25:27
and get away with like being naughty or whatever
25:29
stuff like that like you know Typical teenager,
25:31
right? And I think having this condition, like
25:35
colitis, immediately made me think I need to
25:39
grow up. I know it sounds a bit weird, but like
25:44
this is serious. So we need to start thinking
25:47
about this seriously. But also like how everything
25:50
doesn't matter other than your health. Your health
25:53
is seriously the most important thing. Jobs will
25:55
come and go, you know. Partners, girlfriends,
25:59
boyfriends, whomever they can come and go, but
26:01
your health bottom line is always going to be
26:03
the most important thing. And then getting a
26:05
stoma that changed me to be so much more vigilant
26:10
of inclusivity, how people have different differing
26:17
needs and how like a lot of the world is not
26:19
catered for people have differing needs. Um,
26:22
and I, again, like. going into disabled toilets
26:27
going into like general toys things like there's
26:30
still a huge stigma around these sorts of things
26:32
and yeah my again to point back to my bio my
26:35
mission is to be like the bag life's not bad
26:37
and i've been very privileged to be able to not
26:41
just go on podcasts like yours but work with
26:43
medical companies i've gone and spoken in parliament
26:46
in the uk i've been on the news and it's it's
26:50
like i have an opportunity to try and progress
26:53
things and make things better. Whereas if I hadn't
26:56
had this condition, probably wouldn't be doing
26:59
any of that. I'd probably just be going down
27:00
the pub with my mates. Do you know what I mean?
27:03
So I guess it's giving me a bit more of a unique
27:05
selling point as well. And a purpose, right?
27:09
Yeah, 100%. Like I've always been somebody who
27:12
wants to give back. Like my whole career path
27:15
has always been around how can I help others?
27:17
I've had people reach out to me. Like generally
27:21
just through messages, like stuff like all these
27:24
sorts of things. I remember once, it will always
27:26
stick with me. I had a young mum whose daughter
27:28
was going to go have surgery and she was really
27:30
scared. So she was like, can I call you? And
27:33
this was during the pandemic. So I was like,
27:34
yeah, sure. So she called me and she was really
27:37
upset, cried down the phone. I was like, it's
27:39
all right. Like this will be what happens. Like
27:41
they'll go into theater and then this will happen
27:43
and this will happen. And it had nothing to do
27:46
with. like the daughter who i think it was the
27:49
daughter who was having surgery it was the mom
27:51
and i was just chatting to her mom and she was
27:53
after it she was like you've been so helpful
27:55
like everything you've done is just incredible
27:57
like thank you and that's it all everything we
28:01
do is just to help that one person yeah yeah
28:04
it's it's very interesting you say that and And
28:07
I'm going to share a very similar story that
28:09
happened to me recently as well. And then just,
28:11
I'm telling this as well to really sort of lift
28:13
the spirit of positivity and this importance
28:15
of awareness is that I had somebody recently
28:17
who was struggling. And then I asked, you know,
28:19
cause this is one of the questions I was asked,
28:21
like, so how proactive is your specialist, right?
28:23
Your GI and, um, basically responded and saying
28:26
that not very much takes a long time to get an
28:28
answer. It's not very clear. And I basically
28:31
said. I think what you should really consider
28:33
is try and change, right? Try and find somebody
28:35
else. And in the end, you know, the person came
28:37
back and said, you know what, thank you so much
28:39
because I just, tomorrow I'm going to call my
28:42
network and see what other sort of clinics I
28:44
can have, right? Sort of like just finding this
28:46
tiny little courage to make something, to do
28:48
something very simple, which is picking up the
28:50
phone potentially and, you know, try and find
28:52
another medical team, another provider, right?
28:56
And then I thought about this and I was like,
28:57
you know, in the end, it's really not about views.
28:59
It's not about engagement. It's about like, you
29:02
know, here's one day been able to sort of help
29:04
or motivate or inspire one person to do something
29:07
that could potentially change something positively
29:10
in that person's IBD journey. I mean, that's
29:14
what a great purpose, right? Yeah, 100%. And
29:17
look, what an amazing story for you as well.
29:19
Like, thank you for sharing that. That's awesome.
29:21
Sure. And it's, you're right. That's the main
29:24
thing is. If you can help just that one person.
29:27
And I don't even have to reach out and tell you,
29:29
right? What you're doing, especially with your
29:32
amazing podcast, is people will be listening
29:34
to it and they'll be going, oh, I didn't think
29:36
of it that way around. Or maybe I should try
29:39
and do something different. That's it, right?
29:42
That's it. And that comes through the stories
29:44
of people like you and others who go through
29:47
this journey. So that's really great. Now, if
29:50
you could go back to the 19 -year -old self,
29:55
based on everything you've experienced based
29:57
on everything that you've learned now through
29:58
this journey what would you tell yourself if
30:01
i knew the journey ahead was going to be exactly
30:03
the same i think i would simply say embrace it
30:07
uh don't be scared it'll be all right and there'll
30:12
be hard days but you'll pull through and where
30:16
you end up like today as of recording everything
30:20
you ever wanted in your life you will get So
30:23
I've got a beautiful wife. I've got a house.
30:26
I've got an amazing job. I am doing some incredible
30:28
things on social media. And at 19, those are
30:32
all the questions and the doubts and the fears
30:33
that I had, right? How am I going to be able
30:35
to do this? Will someone love me for my condition?
30:39
All these sorts of things. And the answer is,
30:41
yeah, all of those things and more. And I think
30:43
to anyone that's listening to this, that's just
30:46
the start of their journey. Like it's natural.
30:48
You're going to have doubts. You're going to
30:49
have worries, but everything will work out. That's
30:54
a very positive way and it's exactly how I'd
30:56
like to end the show. But before I let you go,
30:58
there is one question that I have and it's a
31:02
very difficult question. I am going to ask you
31:05
that question because earlier when we were talking
31:07
about this, you know, are you cured or not cured,
31:09
you said yes and no. So you didn't say yes and
31:12
you didn't say no. So I'd like to know from you,
31:16
based on sort of your hopes, your sort of optimism,
31:20
Do you think that we'll see a cure to IBD in
31:23
our lifetime? Yes. I think we will for the advancement
31:29
of, I think AI is going to play a huge part in
31:33
the medical scene. There's so many advancements
31:36
that have taken place in the last five to 10
31:39
years anyway. Like there's more drugs available
31:41
on the market. Stoma care is improving. And I
31:46
think generally our understanding of our sort
31:48
of gut, our biome that we have, all these sorts
31:50
of things, our health is going to improve. So
31:53
yeah, in my lifetime, I think there would definitely
31:55
be, there would definitely be some, a cure. The
31:59
only reason why it wouldn't be is because there's
32:02
other conditions that then take the priority
32:04
in that list for funding and research, you know?
32:07
And I think we'll have more people talking about
32:10
it. And do you know what? It might be something
32:12
so simple that it's like, Don't have olives.
32:16
All right, cool. Amazing. Then no one gets it.
32:18
It'll be, it could be something so simple or
32:20
don't use this type of plastic and microwaving
32:23
stuff or do you know what I mean? And I'm, I'm
32:25
really hopeful that the work that, that obviously
32:29
you're doing, other people are doing in this
32:30
space, um, will help at least push that narrative
32:34
forward. So our, you know, next generations,
32:37
my children, um, I mean, I haven't had them yet,
32:40
but hopefully I will, um, won't have to go through
32:43
the same. So. So, yeah. What about you? Do you
32:46
think that'll be a cure? You know, it's interesting
32:49
to say because you seem so convinced and I'm
32:52
very positive about this as well, even though
32:54
sometimes I look at the world, you know, and
32:55
it's tough to stay positive. But in this domain
32:57
as well, I say yes. Now, the one thing I would
33:00
say is, will it happen in my lifetime? I am not
33:04
so sure. Things sort of tend to move a little
33:07
bit slower sometimes based on the reality. But
33:10
then again, there's a hope. So I'm confident
33:12
there's something positive is going to happen.
33:14
I just hope that we'll not be dragged through
33:18
lots of political or bureaucratic things and
33:20
that people will actually be able to benefit
33:22
from a cure, a really, really positive development.
33:26
But I do also believe that it is going to come.
33:29
And listen, you and I are both young still. Who
33:32
knows, right? So maybe it will be in our lifetime,
33:35
right? Maybe we change the question. Maybe we
33:39
change it to, will everyone have access to the
33:41
healthcare for their stoma care and things? And
33:43
I think if we can at least strive towards that,
33:45
then a cure should hopefully come after that.
33:48
Absolutely. Absolutely. Yeah. And there's a lot
33:51
of optimism needed in that space as well. So
33:53
we'll send that optimism into the universe and
33:56
we'll hopefully get to that point quicker than
33:59
potentially the real cure or while we wait for
34:02
the cure. So, Anne, thank you so much. This has
34:04
really been fascinating. Obviously, this is a
34:06
topic that we could keep on talking about for
34:08
hours and hours, but I'd say we'll just leave
34:10
that to our respective audiences, right, and
34:13
the community. So, you know, we can continue
34:16
the conversation. conversation there. We're going
34:19
to also have your social media handles in the
34:21
show notes so that people can reach out to you
34:23
and bring all these great questions that they
34:26
have. From my end, I wish you nothing but the
34:29
best moving forward with your life and your health
34:33
as well. And keep doing what you're doing because
34:35
it's really, really important. And I think you're
34:38
definitely one of the major players in this field.
34:42
Keep it up, man. Thank you. I'm going to go red.
34:45
That means a lot. Thank you. But same to you.
34:47
Keep doing what you're doing. Keep getting amazing
34:49
people on your podcast. And yeah, just keep smashing
34:52
it. We'll do it together. Perfect. Ant, thank
34:55
you so much. Really appreciate it. Thanks, mate.
34:58
Appreciate it. That's it for today's episode
35:01
of Talking S***, presented by Colitis Unfiltered.
35:04
I'm Frank Tabering. And if this hit home or hit
35:07
your gut, do us a favor. Subscribe to the show.
35:10
And follow us at Kaleidos Unfiltered on YouTube,
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35:17
We'll see you soon for more inspiring stories
35:19
from the bathroom floor.