Latest / Crohn's & Colitis Unfiltered / IBD, masculinity and shame: Jack’s road to speaking out

Transcript

IBD, masculinity and shame: Jack’s road to speaking out · Crohn's & Colitis Unfiltered

0:02
It's given me understanding. It's given me an
0:05
understanding because I was... I've always been
0:09
a sympathetic person, but I've never been empathetic.
0:12
I've never been able to be like, with emotional
0:15
things, yes, but with someone who's like, have
0:17
a physical condition, I'm always like, well,
0:19
just get up and do it. Until I got to the point
0:21
where I could not get up and do it and be like,
0:23
okay, that's it. This is Jack. Jack got diagnosed
0:27
with ulcerative colitis at age 22 in Plymouth.
0:32
Originally, Jack got misdiagnosed and it took
0:35
six years for him to be told that he had IBD.
0:39
On top of that, for too long, Jack was too embarrassed
0:43
to share what hell he was living. And today on
0:47
the Colitis Unfiltered podcast, we're going to
0:50
talk about how he went from someone who was so
0:52
closed off to someone... who's ready to open
0:56
up and share his story with the world. My name
0:59
is Frank Tabering, and Jack, welcome to the show.
1:02
Thank you, thank you. I'm looking forward to
1:04
being here. And I'm looking forward to talk IBD
1:06
with you. And IBD always and obviously starts
1:10
with symptoms and a diagnosis. And so I'd like
1:13
to start with the beginning. Tell me how it...
1:17
initially came to your ulcerative colitis diagnosis?
1:21
Because in the pre -interview we just had, you
1:24
told me it was not that easy in the beginning,
1:27
right? No. So I'd probably say the symptoms actually
1:31
started when I was about 14 and I was quite an
1:34
anxious teen. So the blood in the stool, it was
1:37
only little bits noticeable and I just tend to
1:40
ignore it, ignore it. And when I was 16, I had
1:45
really sharp bad pain. I was like, okay, I don't
1:50
feel well. And I went to the hospital and to
1:52
doctors and they ended up giving me a scan. Following
1:55
the scan, they said, look, it's uncommon for
1:58
people your age, but we think you have diverticular.
2:02
It's uncommon in your age, but this, this, this,
2:05
I don't think you need a colonoscopy. It will
2:08
give you some beta blockers. They advised for
2:11
it, which was completely wrong as well which
2:14
is blood thinners and just kind of put me on
2:17
this wrong treatment straight away from a guy
2:20
who did an ultra scan and didn't want to investigate
2:23
further because he felt it wasn't needed so i
2:26
let that pass that was in 2011 i had that and
2:32
it was about 2017 2018 i started pressing a little
2:37
bit more um and had my first colonoscopy then
2:41
where they actually looked for it because I was
2:43
experiencing more and more pain. I went through
2:46
a lot more with it. And as funny as I got older
2:51
and my diet differentiated, it started getting
2:53
worse. As a kid, I would just live off chicken
2:56
nuggets. So as I explored more things, the diet
3:00
started and then that started. And it came to
3:03
about, I had the colonoscopy. It was like, look,
3:06
you have ulcerative colitis. It's like this,
3:10
like Crohn's. I didn't get a lot of information.
3:13
I didn't have a lot of help. And I was kind of,
3:17
you've got this. You get pains, let us know.
3:21
You're on your way. Here's some anti -heartburn
3:23
medication. Here's some of this and that. Just
3:26
let us know. And I was really blind for that
3:29
for years of not knowing it, not knowing the
3:32
effects. And as I've got Odo and doing my own
3:35
research into it and TikTok and finding your
3:39
channel on YouTube and seeing all these other
3:41
people that dealt with it, it was such a taboo
3:43
topic for me. And then realizing that a lot of
3:46
other people have this and are dealing with this
3:48
made me want to open up about it because I was
3:51
always ashamed of it. Really, really ashamed
3:54
of it. So let me ask you right away. Not only
3:58
did you not receive any information really when
4:01
you were diagnosed with ulcerative colitis, but
4:03
you've lived quite a number of years being misdiagnosed,
4:07
right? So how does one not lose faith in the
4:12
medical field or the medical system? And have
4:15
you lost faith in the medical system or have
4:17
you regained some of the trust over the years?
4:19
We've got new consultants and I've got a lot
4:22
more trust for them. I would have an appointment
4:26
at the hospital every six months and it would
4:28
be, how are you faring? Blah, blah, blah, blah.
4:30
I used to be nervous and I used to go with my
4:32
mum. But then because my mum was there, I was
4:34
too embarrassed to speak about a lot of things.
4:36
But it was one of those things where I went through
4:38
it quite blind, not knowing. all the side effects
4:44
and symptoms and everything else. And I just
4:46
thought, this is the new normal. This is what
4:48
I have to get used to and not let my quality
4:51
of life could change. But the system did let
4:54
me down in that sense. And I feel like they are
4:56
making up for it now, but it's only because I'm
4:58
fighting my battle. Absolutely. So you do need
5:01
to step up and stand up for yourself eventually.
5:05
But at age 14 or 16, obviously this is not the
5:08
first thing that's on your mind. Let's cover
5:11
the period of your misdiagnosis, essentially.
5:16
I mean, you were living with ulcerative colitis.
5:17
You just didn't know it yet, right? So how, at
5:20
16, you know, late teenage years, as you move
5:23
into your young adulthood, how did having ulcerative
5:28
colitis, and again, not knowing having it, impact
5:30
your social... development? How was it in school?
5:35
How was it with friends? How did you navigate
5:38
the flares? How did you handle it mentally before
5:40
you actually received the official diagnosis?
5:43
I just left school when I got that diagnosis.
5:47
Luckily, it was exam period and I missed it,
5:50
but I went to college. Luckily, college was only
5:52
three days a week, so not very intensive and
5:55
very easy days. it was i found that i went toilet
6:00
more than most people and found that i was more
6:04
exhausted than most people so i finding myself
6:06
feeling myself with energy drinks and everything
6:09
just like it on um social situations wasn't too
6:14
bad at that point it was never where i was worried
6:18
i was quite i wasn't at the height of the bad
6:22
point yeah that came a lot later in the years
6:25
in the last recent few years i hit a very bad
6:28
point with it but i managed it and i just thought
6:30
it was normal like oh i've gotta go to the toilet
6:33
now but it was always in my mind like okay go
6:36
go somewhere with a toilet i would never go on
6:39
massive beach trips or anything like that just
6:41
to avoid just being in case there's no facilities
6:44
around or anything like that that was probably
6:46
one of the biggest struggles and it's now been
6:50
little about 10 years that you live with your
6:52
official diagnosis at least following the news
6:55
that you actually had IBD talk to me a little
6:58
bit about where your journey went in terms of
7:01
treatment medications that were you were put
7:04
on and then tell me how it evolved you know from
7:07
that day at age 22 to where you are today so
7:11
initially it was again here's some anti -digestives
7:15
here's suppositories I, at that point, was quite
7:21
a close -minded person. I was young. I thought
7:23
I was this lad, lad, lad. I'm not going to put
7:28
anything up there. I don't need to do any of
7:30
that. And really just ignored it for years. And
7:34
I'd have the flare -ups and I'd go to work and
7:36
I'd sit in the pain. And the majority of the
7:38
time I was... which I experienced the flare -ups
7:41
after diagnosis, was I was working in a call
7:45
centre. So I went through it with them. They
7:47
allowed me extra toilet breaks because initially
7:49
it was, oh, Jack, you're on the toilet too much.
7:52
Oh, Jack, you're not on the phones enough. I'm
7:55
like, what do you want me to do? But I felt too
8:00
embarrassed, really, to just talk about it a
8:02
lot. And that was embarrassment of being a young
8:05
man who had this, was... The biggest problem
8:09
of it all for me, I was ashamed to talk about
8:12
it. And one of the biggest struggles is because
8:16
I didn't want to take the suppositories and they
8:18
didn't want to explore any other medication.
8:20
They didn't want to explore immunosuppressants.
8:22
I didn't even know any medication existed. I
8:25
had to look at myself in the late years and be
8:28
like, well, why am I not on this? Why am I not
8:29
on that? Why don't we try this? And so it was
8:32
kind of just wreaking havoc for years, getting
8:34
worse and worse and worse. But it really did
8:37
come down to like little social things that did
8:41
it for me. It was an embarrassment and it was,
8:44
I didn't want to go to the doctors about it because
8:47
of how people perceived it. And a few of my friends
8:53
knew, my family members know. And I remember
8:55
one fundamental piece that really upset me is,
8:59
and I really went into my shell after this was.
9:03
we was out on a stag day in Hungary and it was
9:06
a, someone made a comment about it who knew about
9:09
it to a load of people that I didn't really know.
9:12
And that really hurt. And it got, I got violent
9:19
with that. And because the embarrassment of it
9:23
and stuff like that, and I've never dreamed of
9:25
doing that to say, but that really put me. back
9:28
from ever wanting to talk about it for a number
9:30
of years it probably took me about four years
9:33
five years to even admit i had it i hid it if
9:36
i ever had a partner or anything like that i
9:39
would like in the early days i'd never let them
9:42
know i'd like to put myself into a lot of pain
9:45
just hiding it if i ever went on like a date
9:48
or went out like with new friends yeah it was
9:52
a hard one and currently Are you on any medication
9:56
now that you've sort of grown, you know, past
9:59
this phase of embarrassment that you've opened
10:01
up? And how are you feeling as well today? So,
10:04
yeah, tired today. I've had a lot of time off
10:07
the last two months. And I noticed that it's
10:10
slightly worse than this week because it was
10:12
my first full week back at work. And I was like,
10:13
OK, I need a nice chilled couple of days. But
10:16
overall, I have went through a number of medications.
10:20
I were taking prednisolone for that. drug that
10:24
not many people like um for me they've never
10:27
put it on me long term and i'm terrible at taking
10:30
tablets which is another thing so i will end
10:33
up missing a day or two and be like oh i've got
10:35
to take them but it made me feel good when i
10:38
was in a flare they put me on suppositories again
10:41
recently which in the last two months have started
10:43
taking that approved but last year they put me
10:45
on metacaptopurine i believe it's called it's
10:49
the yeah the immunosuppressant and that came
10:52
with another world of problems so yeah that was
10:55
not great i've got my own opinion about that
10:57
one oh i got my opinion about that one i was
11:00
on it for years and let me tell you i mean just
11:04
catching a little cold and then sitting with
11:06
a cuff for about you know two months after just
11:09
trying to get rid of it that was just like one
11:11
of the minor symptoms that i had with 6mp i am
11:13
very glad that ditched that one yeah Are you
11:16
going then currently sort of still in and out
11:20
of flares? Do you feel like you have your colitis
11:22
a little bit more under control or do you still
11:24
feel that, you know, you don't have a grip on
11:28
disease management at the moment? I think I'm
11:32
coming out of, I would say I hadn't really had
11:35
a break from it for about a year and a half.
11:37
I think that's probably the longest flare I've
11:39
had. That's the worst it's ever been. And that
11:42
started, I'd say. probably last January. I went
11:46
through a very stressful time, losing several
11:49
family members in a short space of time, really
11:52
bad relationship with an ex -partner and the
11:54
stress just destroyed my body to the point where
11:57
I was bleeding consistently. I was not able to
12:02
make it to the toilet and that for me was really
12:05
embarrassing. And as I explained earlier with
12:08
my job, I'm driving to and from appointments
12:11
and... when there's no toilet around and you
12:14
can't get home in time that happens and that
12:17
is what pressed me to go on the different medication
12:20
and stuff like that so I'm starting to get come
12:23
to grips with it again and I feel life coming
12:27
back into me for the first time in a good say
12:29
a good like 18 months which is really nice but
12:34
it's the the other side of things where it was
12:38
the trialing the Metacaptive Purine and I before
12:42
that and because I only been doing the job for
12:45
two years and I never had one day sick not one
12:49
started the Metacaptive Purine I was having three
12:50
or four days every month from vomiting to infections
12:56
in the body to as you said cold and coughs that
13:01
just hit you like a brick wall and I've never
13:04
been like that I was never a person to go I can't
13:07
go to work I'd always try and power through it,
13:10
especially with that job, because I enjoyed it
13:12
so much. I still do. Well, you know, you're mentioning
13:16
anxiety and stress. My colitis really broke out
13:21
about two weeks after my... well then wife told
13:25
me you know i want a divorce so that unleashed
13:27
a tsunami of stress on me and there you go perfect
13:30
formula for ib to kind of you know wake up and
13:34
wreak havoc on your life so this is probably
13:37
the best time during this episode to have a psa
13:38
stress anxiety you know if you can find ways
13:43
to sort of manage it do because it can have violent
13:47
reactions and not only with IBD or other autoimmune
13:50
condition, but just on the body in general. So
13:52
I can definitely relate to your struggles on
13:55
that front. Any talk about biologics potentially
13:59
from your consultants or has that not come up
14:01
yet? asked the question a few times and they've
14:05
been very dismissive like and i'm like look i
14:08
kind of want to experience it but they they want
14:10
to get me out of this flag because last month
14:13
i went in for a sigmoidoscopy because my ulcerative
14:18
colitis i've got it down to pretty much proletitis
14:20
through like years but that's the my main like
14:24
focus area now and uh they they class oh what
14:29
did they mayo that's what they classed as mayo
14:31
one two three and I was free and they were like
14:33
look I need to go and speak to someone whether
14:35
you're going to be admitted or not I was like
14:37
look I hate hospitals I they cause me so much
14:42
anxiety and stress the beeping of the machines
14:44
I think someone's dying and it's just like the
14:46
odds I'm like ah so I really didn't want to be
14:50
in so I did everything to come home and have
14:52
like a week off to try and get better but that
14:55
still took me like weeks and weeks to get like
15:00
i'm now coming out of that and that was i'd say
15:03
six weeks ago seven weeks ago and that was the
15:05
worst point of it but i would thought that flare
15:09
was just me having a slight flare not a severe
15:12
flare so i think because i've been very anxious
15:16
about going to the hospital that i've put it
15:18
off a lot where I've probably had more severe
15:21
flares than I've always downplayed them. I guess
15:24
it sounds like that in this case, you were probably
15:26
not sick enough, right, to qualify for a higher
15:31
tier of medications, which in one way is very
15:34
twisted. On the other hand, of course, you know,
15:36
I understand that doctors, and in my case it
15:38
was the same, you know, you always want to try
15:39
everything on the lower tiers. and exhaust those
15:42
options before you want to you know make the
15:44
jump to biologics but uh i i'd say if i was in
15:48
your shoes you know if if if this persists this
15:51
pain and you keep flaring you know try and bring
15:53
it up at least again you know and and and sort
15:56
of maybe push a little bit because biologics
15:58
do have the capability at least to to pull you
16:01
into the long long -term remission you know and
16:04
if you're not like flaring terribly all the time
16:08
now you've You've talked a lot about ignoring,
16:14
about missing, about downplaying. And luckily
16:18
for us humans, as we grow older, our mind evolves
16:22
as well. And we start realizing that maybe previous
16:26
decisions that we've taken might have not been
16:29
the smartest ones and could have potentially
16:31
either prevented a lot of agony and pain. In
16:34
your case, do you often have any regrets about
16:37
the close -mindedness that you've had all those
16:40
years? No, because I'm more open to talk about
16:44
it now. And I think if someone's open, ready
16:47
to talk straight away, it's very easy to listen
16:51
to them. But so when someone says, look, it's
16:52
hard for me to talk about this. I feel that it
16:55
sometimes gets you listening a little bit more.
16:57
Like I felt embarrassed about this for years.
17:00
And you're like. But you're not embarrassed.
17:01
And that can inspire others. Because if someone's
17:04
like, oh, he's open about it so freely, how can
17:06
he do that? But if they know the backstory that,
17:08
no, I was once like you, I was embarrassed to
17:10
talk about this. I was like humiliated by my
17:15
body in a sense. And now I don't care. It's my
17:19
body. It's what it is. If I'm going for a flower,
17:23
I don't care anymore. I know what I need to do.
17:25
I need to rest up. I need to get my body better
17:27
to get the best out of me. That's a very fair
17:29
point. So then my follow -up question to that
17:32
one is, what made you want to open up? What made
17:35
you change that direction? Was it a very specific
17:39
moment in experience and time? Or did that sort
17:41
of gradually develop? I've always wanted to inspire
17:44
people. And I've always wanted to help people
17:46
where I can. And I've always been a big advocate
17:49
for mental health. And I thought, how can I be
17:51
an advocate for mental health? Like in years
17:54
before, I set up mental health groups during
17:57
lockdowns for people to speak. And I've done
18:00
training courses every place I've worked. I've
18:02
done them. I thought, how can I do that and say
18:05
that you need to be open and talk and not be
18:08
embarrassed about what you're going through?
18:09
When I'm not talking about, why am I not practicing
18:12
what I'm preaching? And I've seen a lot on TikTok
18:16
where... There's a lot of females talking about
18:19
it. And it's a lot of open in the female community.
18:22
I've seen very limited men talk about it. I know
18:25
there's a couple of guys with a stoma that talk
18:28
about this quite big, but I find as men, you,
18:32
someone greater talking, but we don't tend to
18:36
talk as much as. the opposite gender and i don't
18:41
know why but i really want to break that stigmatism
18:43
because if we break it in this it could break
18:45
it in other things and then hopefully it has
18:47
a long lasting reaction and yeah people will
18:50
rope them absolutely i mean i think with men
18:53
what it could be some sort of unconscious ego
18:55
right that's uh kind of preventing us from doing
18:58
that but it already takes i think also for for
19:01
men it already takes a lot to say hey i was embarrassed
19:04
for years you know and you mentioned that a lot
19:07
you know in the last 20 minutes that we've been
19:09
talking so so props to you because that that
19:11
takes that takes guts in the first place and
19:14
then the next step is opening up and talking
19:16
openly about it and and and I do agree with you
19:18
practicing what you preach it's not easy for
19:22
everyone but that's the way to go obviously and
19:24
only good come can come out of it Looking ahead,
19:28
how do you keep hope alive that your body is
19:33
not going to further betray you? And how do you
19:34
deal with this potential fear of my colitis might
19:38
get worse, medication might not work anymore,
19:40
there could be surgery in the future? Because
19:43
we all have those thoughts, right? We all have
19:45
those fears, essentially, those doubts. How do
19:47
you deal with that? So for years, I've always
19:51
said, if I end up with a stoma, and this is...
19:54
very controversial take is that i would take
19:56
my own life because i would not want to live
19:59
that way and i've said it and now i just don't
20:03
care i have overcome so much in my life and i've
20:08
had flares battling me i had sepsis two years
20:12
ago and nearly lost my arm i have went through
20:16
more than most and i can do it and i know anyone
20:20
else can do it we know our bodies yes professionals
20:24
can help but you know what makes you better and
20:27
it's about really knowing that if you're thinking
20:31
up here I'm going to beat this you'll be more
20:34
inclined to fight it and I know when you're in
20:36
bed and you're in pain and you don't want to
20:39
get up and fight and you don't want to do it
20:41
that's okay but you've got to know that you're
20:43
going to beat this deep down because that's what's
20:45
going to get you there if I end up with a stoma
20:48
in years to come I end up with a stoma I'll worry
20:51
about it then at the moment now i'm enjoying
20:53
life i'm seeing everyone around me enjoying life
20:59
and i'm enjoying it with them and i'm not letting
21:01
it dictate i just plan more oh we're going to
21:04
there okay i know i can go toilet there there
21:06
and there okay they're going there i can't do
21:09
that today but it doesn't mean that i'm not going
21:10
to go and do this instead it's you've really
21:13
got to look at things like that and really not
21:16
let it get you down the last couple months it
21:18
has got me down i've cried and i'm not a massive
21:21
crier and i just of like every time after i'm
21:26
like no this isn't this is not beating me so
21:28
it's okay to cry about it but know that you're
21:30
gonna overcome it and yeah i think that's a good
21:35
point to take from it is that it's gonna batter
21:37
your mental health but it's you versus you and
21:40
either way you're gonna win so you gotta take
21:43
it it's gonna be the good bit that's gonna win
21:46
and not the bad yeah and i was gonna ask you
21:49
how you got to that point where you basically
21:50
already answered it based on the more pain you
21:53
experience the more prolonged time of very violent
21:56
vicious disease that you're going through the
21:59
more resilience you built the more courage you
22:03
built and you know props to you for for for reaching
22:07
that point and and getting to where you are today
22:10
i often describe ibd as a blessing and a curse
22:16
and i think we've talked about the curse part
22:18
it's honestly pretty obvious when you're an ibd
22:22
warrior i'm going to ask you about the blessing
22:26
part for you specifically Your IBD journey so
22:30
far, where does the blessing lie? It's given
22:33
me understanding. It's given me an understanding
22:36
because I was, I've always been a sympathetic
22:40
person, but I've never been empathetic. I've
22:43
never been able to be like, with emotional things,
22:46
yes, but with somebody who's like, have a physical
22:48
condition, I'm like, well, just get up and do
22:50
it. Until I got to the point where I could not
22:52
get up and do it and be like, okay. that's it
22:56
and that's only come over the last like couple
22:58
years the last 18 months it really changed my
23:01
mindset so for me it's opened me up to one realize
23:07
that people have these conditions and they can
23:09
it can really affect them mentally and physically
23:12
and also that it doesn't stop you living your
23:18
life and in some jobs you get extra breaks because
23:21
you get to go to the toilet and that gives you
23:25
time to not worry about things and give a like
23:27
okay well i'm going to there and i'm not great
23:30
at the moment but i'm covered because people
23:34
a lot of people don't know that we're covered
23:36
by the equalities act in the uk so they can't
23:38
sack you for this there you can and i have battled
23:42
with employers about it and stuff like that you
23:45
are protected by the law with it you don't have
23:48
to be ashamed of it and torture your employer
23:50
if they try and punish you for it fight back
23:52
they can't do anything they can't say well you
23:54
got to stay later or anything like that no you're
23:56
entitled to reasonable adjustments and that is
23:59
the blessing that you have a lot more going for
24:02
you on your side than you think and you can feel
24:05
what other people go for a bit more and the community
24:09
the community is quite good i've never met someone
24:11
who's bad with it that's and talks about it will
24:17
ever judge or anything it's always an open ear
24:20
and it seems like you're okay like i know what
24:24
you're going through i think that is also another
24:28
weird lesson going a little bit off there time
24:31
to slow down now it's my body has told me when
24:37
to slow down and i enjoy being a bit more slow
24:40
i was never slow i was always thousand miles
24:42
an hour and going around and around and around
24:44
but now it's like okay body needs a break i need
24:48
a break and just enjoy this peace and the slowness
24:52
and that's another huge blessing from it because
24:55
i don't think i would have ever learned that
24:56
else and you made a very good point you might
24:59
lose a lot of trust in a healthcare system you
25:02
might be disappointed in a healthcare system
25:04
but when it comes to working you have rights
25:07
and you should You should know that. A lot of
25:10
people, I think, ignore that fact. And then,
25:12
like you just said, you know, they're afraid
25:13
to speak up. They're afraid to disclose their
25:16
IBD. But you have rights, especially in the UK.
25:19
And I always say to UK, US, it's pretty clear
25:21
because that is protected. And I think in the
25:23
UK as well. And it's recognized as a disability,
25:27
if I'm not mistaken. Your employers, your workplace,
25:33
they are required by law to accommodate certain
25:37
aspects of your disease. And you're not asking
25:41
for too much either, right? So very important
25:44
for people to know. So you mentioned your body.
25:46
You mentioned earlier that you're much more conscious
25:49
now when your body needs rest, you give it at
25:52
rest. And frankly, with chronic illnesses, the
25:55
body has the last say anyway, right? How did
25:59
you reconnect with your body? How did you improve
26:03
that sort of broken or damaged relationship that
26:06
you've had with your body for a number of years?
26:10
I think one thing that helped me was the gym.
26:13
I started working out. I got quite fat. I was
26:17
the other side of osteocolitis. A lot of people
26:20
lose weight. I was putting on weight because
26:23
everything was moving so fast through my body.
26:28
eating and eating and eating and eating and some
26:31
of that could have been due to stress and stuff
26:33
like that but i really i got to like 101 102
26:37
kg and i'm not far from that now but the different
26:41
the body composition is my belly was huge and
26:45
but going to the gym seeing my body get healthier
26:47
and stronger and also that also held my colitis
26:51
in a sense because my diet cleaned up and i wasn't
26:55
eating my triggers because i knew what my triggers
26:57
were and i'd eat them anyway i'd be like oh i
27:00
don't care and i'd still eat my triggers sometimes
27:02
you gotta live but i know like okay if i'm gonna
27:06
eat that i've got to prepare myself and i've
27:08
got to be like okay i wouldn't make sure i'm
27:10
not doing nothing the next day because i might
27:12
be a bit iffy but you've got to learn to love
27:14
your body because you only get one and i went
27:17
to the gym i went swimming i went on a few holidays
27:23
and i wanted to look good so that wanting to
27:26
look good has made you love your body a little
27:28
bit more because again it's a blessing and a
27:31
care so your body's a temple but if you let that
27:34
temple fall apart when it's already falling apart
27:36
from the inside you're not you're not helping
27:38
it so i think one thing that i did learn was
27:43
look after the body and don't shove everything
27:47
wrong into it and go to the gym but I never overextended
27:51
in the gym on the days felt good I did like an
27:55
hour and a half I did a challenge for colitis
27:58
and it was meant to be 30 minutes exercises there
28:00
did 300 every day for the month of January and
28:03
raised the money for that and I was at a real
28:07
high point then and I got really fit and then
28:10
two months later I hit a flare and the muscle
28:12
went and got a little bit fatter again and that
28:16
that's that's okay because it to and fro but
28:20
your body can be is an amazing thing and yeah
28:24
i think the gym really did help because that
28:29
mental being able to go there and do things that
28:34
other people are doing but also sit there with
28:36
your own thoughts as i said the quietness is
28:39
quite good and you take the frustrations out
28:41
and i found that i'd go home and go to the toilet
28:45
and sometimes it wouldn't be great sometimes
28:46
it'd be great depending and then i would go okay
28:49
i can carry on this week or okay i need to slow
28:51
down i'm over exaggerating um you've just got
28:53
to find the way that your bodies are talking
28:55
your body's talking to you and you've got to
28:57
trust your body if you feel tired you've got
29:01
to go to the gym and if you want to go and have
29:04
that but just do 20 minutes on the treadmill
29:06
Just have a light walk on the treadmill. Have
29:08
your downtime. Feel that you've done something
29:11
to give you the endorphins, which makes your
29:13
body feel good, and then just go and relax. Very
29:16
important change in perspective. And in the foreword
29:19
of my book about my IBD journey, I actually talk
29:21
about the fact that it's so fascinating that
29:24
when you're dealing with IBD, you're dealing
29:26
with a body that attacks itself. It attacks you.
29:29
But at the same time, it also gives you the ability
29:32
to fight back. And to me, you know, as simple
29:35
as that is, it's absolutely mind blowing. And
29:39
the body is the temple and you need to feed that
29:40
temple. Even if that temple sometimes feels like
29:42
it's just, you know, collapsing, you need to
29:45
keep going. And like you just said, you work
29:47
out, you get better, you have a flare. Well,
29:48
brings it back down, got to get up and keep on
29:51
going. It's the only one you've got. Knowing
29:54
everything that you know about IBD, having experienced
29:56
everything that you've experienced with your
29:59
inflammatory bowel disease. What? kind of words
30:03
of advice would you give to people who have been
30:06
recently diagnosed or have been living with IBD
30:08
for a while and are feeling themselves trapped
30:11
in the same corner that you were, embarrassed
30:14
to talk about it, not wanting to say anything
30:17
to anyone, you know, feeling isolated with it.
30:19
What would you tell those people? I'll go to
30:22
the bit of my sterner side with this one is that
30:25
no one's going to save you but yourself. There
30:28
is no miracle drug. You can try them. Hopefully
30:31
one works. There is no miracle diet because most
30:35
half the time it's not diet. There is no miracle
30:38
that's going to get this out to you. You have
30:40
to advocate for yourself. You've got to push
30:43
yourself and you've got to do it for you and
30:46
the people around you. And on those hard days
30:49
is and you think, oh, hey, what's wrong with
30:51
me? Put your symptoms in. Go to the health professional.
30:54
Push them. I email mine all the time. They probably
30:57
think, oh, Jack's emailing me again. Go away.
31:00
I'm like, I've got these symptoms. I'm not happy.
31:02
What's going on? And I think you've really got
31:05
to fight your corner. As I said, no one's going
31:11
to save you but yourself. And that's it. Hopefully
31:15
you get something that puts you in remission.
31:16
Hopefully you have a diet that puts you in remission.
31:20
Other than that, it's only you versus you in
31:23
a sense, because that's your body. And you've
31:25
got to win. That's got to be you. And you can
31:28
do that. And you've got to have the confidence.
31:31
And even if you think you've done, just start
31:33
by talking to your family about it. Just start
31:35
by talking to small groups. Talk to, like, obviously,
31:40
if you have an employer and they need to know,
31:41
talk to them. And then you'll find it easier
31:44
to talk and talk and talk. And then think. well
31:49
i've got this wrong with me but it's not wrong
31:51
with you because it's you and just really power
31:55
through fight for yourself fight if you're not
31:59
getting reply i've had ever all i was meant i'm
32:03
meant to have monthly appointments at the moment
32:04
i've had one this year every single one's cancelled
32:07
and i ever soon as they cancel it i email them
32:09
you've got to push for yourself and don't think
32:12
oh because you'll get lost in the system There's
32:15
millions of people in health care waiting to
32:18
be seen. And we are a small segment of it. And
32:22
we will fall through the cracks. And if you are
32:26
not making noise, you will drown. If you're drowning,
32:30
you fight those waves and you say, I'm here.
32:34
And you battle and try and swim out and they
32:36
will meet you halfway. But if you just sit there
32:39
and sink, you're not going to be saved. You've
32:42
got to save yourself. You've got to fight. You've
32:44
got to get there. And you've got to have every
32:46
ounce of confidence in yourself that you will
32:48
beat it and you will get better. Jack, if you
32:53
could go back to that, I was going to say a 16
32:57
-year -old who got misdiagnosed, but potentially
32:58
a 14 -year -old who started experiencing these
33:02
symptoms and hit them, what would you tell yourself
33:05
if you had the opportunity? That's a difficult
33:08
one. Be brave. Be smart. You know you're right
33:14
and don't listen to other people making your
33:16
choices for you. Also, be you. You know what's
33:22
going on with it. Don't mask it behind this masculine
33:25
thing of, I can't have a throb for me, I'm a
33:28
bloke. Be yourself. That's a massive thing through
33:32
my whole life is just be yourself. I got to tell
33:35
you, Jack, now talking to you today, I... I find
33:40
it hard imagining that you went through a long
33:43
period of your life where you actually didn't
33:45
talk about this at all because you really went
33:46
from somebody who... was very closed off to somebody
33:49
who now is really opening up about it. And that
33:53
is just beautiful to see. I know a lot of people
33:55
that are watching this or listening to this might
33:58
not be at that stage yet. And that is absolutely
34:00
okay. I always say that you are in control of
34:04
your own story. And when you feel that day comes
34:07
that you want to open up and share your story
34:09
or part of that story, you make the rules, you
34:12
dictate the pace. But people like Jack here,
34:15
You see it. It is absolutely possible. It may
34:17
take some years. It may take decades. But eventually,
34:23
as you continue to evolve with your IBD journey,
34:27
opening up, talking about it, or talking shit,
34:30
like I always say, will bring a lot more positives
34:33
into your life than just continuously hiding
34:37
from it. So, Jack. Thank you so much for sharing
34:40
your story with me today. It was really, really
34:41
insightful. And keep going, you know, keep talking
34:44
about it. I think it's really great. And I do
34:45
wish you all the best with your colitis journey
34:48
and hope that you'll kind of get it into control
34:51
and experience remission sometime soon. So thanks
34:55
again. Who knows, I could be back on here in
34:57
12 months with another story. There we go. And
35:01
I'll be ready. I'd love to hear it. Perfect.
35:03
I want to end on one note is... If you are sat
35:07
at home and you're thinking, when is this going
35:10
to change? When is this going to change? Make
35:12
yourself the change. As I said, be strong. Be
35:15
you. Be the change yourself. If you feel that
35:18
you can actually start speaking out, reach out,
35:20
get on this podcast. It's great. Start speaking
35:23
to people about it. The stigmatism dies when
35:26
we change. You can't wait for someone else to
35:28
change it. 100%. The mind, the voice, very powerful
35:31
things. Thank you so much, Jack. Really appreciate
35:34
it. Cheers. Thank you. That's it for today's
35:38
episode of Colitis Unfiltered. I'm Frank Tabering.
35:41
And if this hit home or hit your gut, do us a
35:44
favor, subscribe to the show and follow us at
35:47
Colitis Unfiltered on YouTube, Substack, Instagram,
35:50
Threads, TikTok, and Reddit. We'll see you soon
35:54
for more inspiring stories from the bathroom
35:56
floor.