Latest / Crohn's & Colitis Unfiltered / Crohn’s, loss of control and acceptance: Oktober’s hard IBD reset

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Crohn’s, loss of control and acceptance: Oktober’s hard IBD reset · Crohn's & Colitis Unfiltered

0:02
With Crohn's I'd say the massive common misconception
0:06
is it's just about going to the toilet and pooing
0:10
and I certainly it's a lot more than that it
0:14
you know like I say it it drains you the fatigue
0:19
the mental side of it there's so much more to
0:22
it than just what people see as the physical
0:27
symptoms. Welcome back to the Talking S*** Podcast,
0:31
presented by Colitis Unfiltered. My name is Frank
0:34
Tabering, and today I have the pleasure of speaking
0:36
with October, who got diagnosed with Crohn's
0:39
disease at age 18 in London. October, welcome
0:43
to the show. Hello, nice to meet you. Well, it's
0:46
a pleasure to meet you as well. And what I'd
0:48
like to do typically is sort of dive straight
0:51
into your IBD journey. So if you want to give
0:54
us, in a couple of sentences, a brief overview
0:58
of your journey from diagnosis to where you are
1:02
at today okay yeah i'll try and keep it as brief
1:05
as possible um so i was Diagnosed when I was
1:10
18. I had a lot of stress going on in my life
1:13
at the time and I think that kind of brought
1:15
my symptoms out more so. So I then went back
1:19
and forth to the doctors for about six months
1:21
and then I got referred to our local hospital
1:25
where they then were able to give me my diagnosis
1:29
and then I kind of went on lots of different
1:32
biological treatments for a very long time but
1:35
unfortunately lost quite a lot of reaction to
1:38
all of them which then resulted in having a stoma
1:41
surgery and I've had various other surgeries
1:44
and yeah now I live with a permanent stoma and
1:46
still have Crohn's disease. It doesn't end with
1:50
the surgery, right? That's like what a lot of
1:52
people kind of get wrong. They think, hey, let's
1:55
remove my intestines. It's going to be fine.
1:58
I'm cured. But that's obviously not the case.
2:00
Yes. Yeah, unfortunately not. So let's go back
2:05
a little bit. You got diagnosed. If you go back
2:09
to that very moment, what went through your mind
2:13
when the physician told you that? This was Crohn's
2:17
disease. And had you heard about it before? Was
2:20
it the first time? Yeah, so I'd never heard of
2:23
it before. I think I may have vaguely heard about
2:26
a celebrity that was on a TV show that I watched
2:29
at the time, maybe have it. But I didn't really
2:31
know at all what it was. I went with my mum,
2:35
like I say, I was only 18. And I luckily saw
2:39
a really great consultant. She was really supportive,
2:41
really helpful. She told me... We went through
2:45
my symptoms and she asked me what I thought I
2:47
had and I thought I had IBS because that was
2:50
the only thing I knew that was like that. She
2:53
said then that I had IBD that had Crohn's disease
2:56
and she gave me a leaflet which then I found
2:59
really helpful actually because she then said
3:01
to go away, read the leaflets, read about the
3:03
disease and then go back to them with any questions
3:06
that you may have which actually was a really
3:08
helpful process. What were your first symptoms?
3:12
What were the symptoms that made you think, wow,
3:15
something is seriously wrong here and I better
3:17
get this checked out? Yeah, so I... so like I
3:22
say so I was eight had just turned 18 I was trying
3:25
to learn my do my driving test which took a lot
3:27
of stress out of me I had just started working
3:30
full -time so it was all quite stressful but
3:33
my main symptoms were I was just going to the
3:35
toilet ridiculous amount of times a day about
3:38
20 -25 times a day I would also have no control
3:41
so I remember I used to work somewhere that was
3:44
about an hour's drive away I would drive to work
3:47
and I'd have to rush straight to the toilet because
3:49
I just couldn't make it there'd be times within
3:52
my day that I had to rush to the toilet so it
3:54
was that kind of loose of kind of having no control
3:57
and then also one of my main symptoms was I had
4:00
really achy joints so my knees and my elbows
4:04
were just really tender to the point where I
4:08
remember having to rush out of bed in the night
4:10
to go to the toilet but couldn't quite get myself
4:12
up because I just lost that like strength in
4:16
my elbows. And then I guess the other main symptom
4:20
I had was exhaustion. I was just absolutely exhausted,
4:23
falling asleep in the evening once I got home
4:27
from work, not being able to stay awake and everyone
4:30
thinking that it was a little bit strange and
4:34
then losing weight. I just couldn't keep any
4:36
weight. on at all um to the point where my mum
4:39
used to say to me was i getting food on the way
4:42
home from work and then not eating my dinner
4:44
because i didn't like her food which wasn't the
4:47
case i just my appetite went smaller and smaller
4:50
and smaller i just couldn't couldn't eat much
4:52
so yeah they were probably my main symptoms so
4:55
moving post -diagnosis, you mentioned that you
4:58
went through several treatment options and I
5:02
guess they failed, right? Can you take us a little
5:03
bit through how long or over how many months,
5:06
years you went through treatments, you know,
5:09
biologics, and then also how you navigated that
5:12
part of your disease mentally and physically
5:16
before you got to the point of surgery? Yeah,
5:20
so like I say, so I was diagnosed when I was
5:22
18. I'm now 28. So I went six years trying lots
5:27
of different biological treatments and some would
5:30
work. So my first ever treatment I got put on,
5:33
it lasted and it worked for about a year and
5:35
a half and I felt a lot better. My symptoms improved,
5:39
but then my body just seemed to get... tolerant
5:42
to that and it found a way for my Crohn's to
5:45
come back out. And then kind of after that was
5:48
probably when I didn't really keep much of a
5:52
tolerance to the medication that I was on. So
5:55
I'd go on steroids quite often to try and help
5:57
it, which we all know that unfortunately steroids
6:00
then have the opposite effect. Massive balloon
6:03
face, always feeling hungry, all that horrible
6:06
side effects that steroids have. So yeah, so
6:09
I... It was a good six years that unfortunately
6:11
I was probably on treatments for a year, six
6:15
months, like various different things. And I'd
6:18
kind of got to the point where I had tried all
6:20
the biological treatment that was available in
6:23
my country and for us. So the only option was
6:26
going to be to have a temporary stoma just to
6:29
give my vows that relief. 2020 was when that
6:33
was booked in to Inferi have that. And I just
6:38
got progressively worse before the actual surgery
6:40
that I had to go in and have it sooner because
6:43
my bowels just got so bad that I couldn't leave
6:47
the house. I was just unable to not be with the
6:51
toilet really and stuff. So yes, I had my temporary
6:55
stoma, which was quite a lot. That's then kind
6:59
of resulted in, unfortunately, my Crohn's still
7:03
coming back really with a force when I had my
7:06
temporary stoma. So I then I felt much better
7:10
with a temporary stoma. And I thought it was
7:14
an adjustment, of course, but I felt better.
7:16
But actually, my symptoms inside and my bowels
7:21
were still very inflamed. So it then resulted
7:24
in February. of that year so 2021 I had to have
7:29
emergency surgery which is where I then had my
7:33
whole large intestines and my bum removed and
7:37
a permanent stoma because it was just too inflamed
7:39
really so you got a little bit better you got
7:43
worse again leading up to the surgery how did
7:47
you navigate life because you were pretty young
7:50
right and as a young person There's a lot of
7:53
things you typically want to do in life and do
7:56
in life. How did you navigate that part of sort
8:01
of growing up with this uncertainty and this
8:04
constant fluctuation in your condition? Yeah,
8:08
I mean, I would say it was very hard. I'm very
8:11
lucky I've got really supportive family and friends.
8:14
So they understood as much as they could. But
8:18
I mean, I guess they only really... saw the going
8:21
to the toilet part they didn't really understand
8:23
what it's like living with it I don't think you
8:25
do it until unfortunately you do live with it
8:28
I was luck quite I say quite lucky and but I
8:33
was with my now husband at the time so I didn't
8:36
have to kind of go down the route of a relationship
8:39
a new relationship and things so I had his support
8:42
throughout which was his husband amazing especially
8:45
then when I had my stoma I didn't have to navigate
8:48
two sides of all of it I just had to focus on
8:51
that and him supporting me which was great but
8:54
it definitely my life felt very isolating even
8:57
though I had lots of support I got to the point
9:01
where obviously I didn't want to go out I didn't
9:04
want to socialize I Didn't really even want to
9:08
go on holiday or anything like that because I
9:11
had scenarios where I'd go to, you know, on an
9:14
aeroplane and then need to get to the toilet
9:16
quickly and things. So my world became very,
9:19
very small. I kind of just went to friends and
9:23
family's houses where I knew I had a safe. place
9:25
to go to the toilet if I did go out for the day
9:28
I pre -looked and planned where a toilet was
9:31
so I knew I'd be able to get to a toilet so you
9:35
know I had up to that point been very fortunate
9:38
that never struggled with anxiety panic attacks
9:42
anything like that but by the time my Crohn's
9:45
got really aggressive and affected my life I
9:49
definitely struggled with that I got to the point
9:52
where I couldn't leave the house without having
9:54
a panic attack about thinking about what could
9:57
happen if I was going to mess myself wherever
9:59
I was. It made my working life very hard. I didn't
10:02
feel like a normal new person in the working
10:06
world. Then had to have quite a lot of time off
10:09
sick, which obviously is quite hard to navigate
10:11
with employers. I work in the beauty industry,
10:15
so I would be with clients for a big chunk of
10:17
time, which was then quite hard to navigate.
10:19
So, yeah, I would say overall it was quite a
10:23
hard time with my Crohn's. I mean, I guess the
10:27
flip side to that is since having my stoma as
10:29
much as navigating a stoma. I feel like I have
10:33
a life back with a stoma. So that would guess
10:36
be the only positive with a stoma in comparison
10:38
to my Crohn's disease at least. Yeah. And I'm
10:43
going to ask you about how you're doing in a
10:45
minute. Before we get there, I want to go back
10:48
to the moment where you were told that surgery
10:51
was essentially the only option. So receiving
10:53
an IBD diagnosis is one thing, but then you struggle
10:56
the way you did. And then on top of that, at
10:58
one point, somebody tells you, hey, we need...
11:01
to consider surgery or basically surgery is the
11:03
only option. How did you deal with that from
11:07
a sort of psychological point of view when you
11:10
heard those news that this was actually going
11:13
to happen? I didn't. I totally thought I wouldn't
11:18
need surgery. I fighted against it. I was quite
11:22
stubborn and thought I could change what was
11:26
happening, even though I think deep down I knew
11:28
I couldn't, but I just... wasn't prepared for
11:31
that massive change that I thought was going
11:34
to happen at that point I hadn't really seen
11:37
much on social media with stomas especially with
11:40
younger people so I only had in my head like
11:44
most people I think do elderly people with a
11:47
stoma the idea of poo on your stomach you know
11:51
like all this stuff that I was just I didn't
11:54
want it and I sunk my head down and I said to
11:59
my surgeons that I would do what they felt was
12:02
best but I really didn't want it and was there
12:04
any other options and then I think I had like
12:07
a light bulb moment where I went shopping and
12:11
I just couldn't even last 10 minutes without
12:14
having to rush to the nearest toilet in the shopping
12:16
centre and then I couldn't even make the drive
12:20
home without having to stop and I think there
12:23
was just this like really bizarre cliche light
12:26
bulb moment where I went I can't do this I'm
12:29
gonna have to try it and see what happens really
12:34
and like I say I then that's when they then said
12:37
let's do a temporary one to kind of I guess soften
12:40
it for me to make it a bit of a yeah like a nicer
12:45
feeling knowing that maybe you could go back
12:47
to a normal body which I say that in quotations
12:52
because now I don't see my body as not normal
12:55
but at the time I felt that that was going to
12:59
be really alien and not very nice so yeah I think
13:04
it was a lot but I think the last straw was not
13:08
having a life really and relying on just staying
13:13
in the four walls of your house and having your
13:15
toilet and stuff I just realized I couldn't do
13:17
that so it was like an epiphany triggered by
13:22
Misery, essentially, right? Yeah. That you kind
13:25
of accepted. So you mentioned that back then
13:29
you hadn't really seen a lot of people with ostomies,
13:32
you know, on social media. But interesting enough,
13:34
this has really changed. And I see myself now.
13:37
It's like everybody who sort of shares their
13:41
story or living with ostomy on TikTok, on Instagram,
13:45
seems to have... at least the people that actually
13:48
put themselves out there, seem to be very confident
13:51
in even showing their stoma. And then you are
13:54
basically just as outspoken now. You have no
13:57
issue showing yourself, talking about the stoma.
14:01
So I'm interested to know then what made you
14:04
go from this person who sort of like was very
14:07
timid about it or potentially even embarrassed
14:09
and really not wanting it to... essentially now
14:13
embracing it in the sense that you're very outspoken
14:17
about it. Was that another light bulb moment?
14:19
Did that gradually change? Where did that come
14:21
from? Yeah, so I think it gradually changed.
14:24
So when I had my temporary stoma, it was very
14:28
foreign to me. I didn't really know what I was
14:32
doing. It took a long time and I didn't feel...
14:36
happy with it and I kept saying yes when I get
14:40
my reversal it'll be fine like I kept talking
14:42
about my reversal as if like this was just a
14:45
temporary fix and we would be over it the the
14:48
main moment for me was my surgery in February
14:54
2021 when I had to have then my permanent stoma
14:58
that ended up being an emergency surgery so I
15:02
went down to theatre I was in hospital and they
15:07
were treating my I had an infection so they were
15:09
treating the infection while I was in hospital
15:11
and the plan was to get better and then have
15:16
more surgery in like a month two months time
15:19
once my body was in a better state to be able
15:22
to cope with the surgery but unfortunately literally
15:28
I was just about to be discharged and I didn't
15:30
and that evening I had an abscess which burst
15:34
inside me in my large bowels so I then got rushed
15:39
down to theatre and that's when I had my emergency
15:43
surgery to then have my whole large intestines
15:48
and rectum removed. And that surgery was quite
15:52
intense where obviously it was an emergency.
15:55
I was then in intensive care. They had to then
15:58
go finish the surgery halfway through because
16:00
I was kind of losing grip and other parts of
16:05
my organs were failing. So they had to stop the
16:07
surgery and then go back in the next day. And
16:10
I think when you have like a scenario like that
16:14
and no one wants it, I don't wish it on anyone.
16:16
But I think that... made me then respect my body
16:20
so once I recovered from all of that which was
16:23
a long time I realized one I wanted to share
16:27
my journey because I think if I hadn't buried
16:30
my head for so long I may have not resulted in
16:33
what it did but I never wanted to rush to the
16:37
hospital doctors because I always thought oh
16:41
it'll be fine you know I'm sure it will sort
16:45
itself um now I know that unfortunately it doesn't
16:48
sort itself it's something you need to have medical
16:51
help with and also I think I just in that moment
16:55
then I thought I if I can give something to one
16:59
other person is to give that confidence that
17:01
if you need to have a stoma it will be okay so
17:06
I think that's kind of the moment that I thought
17:08
I want to get this out there I want to show people
17:11
that living with a stoma You can have a normal
17:14
life. You can value it. You kind of respect your
17:18
body more than probably someone who hasn't been
17:20
through a lot of trauma. So yeah, I think that
17:22
was kind of my moment, my epiphany, my life experience
17:27
that kind of resulted in then my change in attitude.
17:30
Yeah, absolutely. You said that now you have
17:34
your life back, but it's not over. So tell me
17:38
a little bit about the... challenges that you're
17:41
experiencing well currently so I had a stage
17:45
where my Crohn's did go into remission which
17:47
was amazing but then unfortunately my Crohn's
17:50
seemed to reappear in my small intestines and
17:54
my consultants were quite confused to how it
17:57
kind of came back but it did so that's why I'm
18:00
now on new Crohn's treatments I've tried a couple
18:03
of since having my stoma surgery and I guess
18:06
naively I thought once you have a stoma you your
18:10
Crohn's, your IBD, whatever you have will disappear
18:13
and that will resolve it. But I learnt the hard
18:18
way that no, it can still come, it can still
18:20
be there and you can still be living with a stoma
18:23
and then all the other effects that any IBD condition
18:27
has. So yeah, I think that's quite hard to juggle
18:31
because a stoma, you kind of fall, it's a bit
18:35
like... any other routine in your life you do
18:39
it does become part of your routine you find
18:42
a way to just make that work with your life but
18:46
when you then have your IBD symptoms with your
18:50
stoma it sometimes heightens it so if you have
18:53
a flare -up say it sometimes can be a lot worse
18:57
with your stoma because then your output can
18:59
affect your stoma and then you get harder pain
19:03
so yeah it is challenging but you know you find
19:06
a way around it that's for sure if you look at
19:09
the person at age 18 diagnosis and the person
19:14
you are today your entire IBD journey so far
19:17
how has it changed you as an individual as a
19:21
human being you think I think I'm a lot more
19:23
resilient to life now I definitely try and find
19:29
a more positive outlook on anything I think when
19:33
you've been so low you appreciate the smallness
19:36
of things which I actually really love that that
19:39
it gives you that because I think just you know
19:42
there was a stage when I couldn't even walk after
19:45
my surgery so being able to just take myself
19:48
and go for a nice long walk with the dog is is
19:51
so nice so I think the strength and the resilience
19:54
is the yeah the main things I'd say. It's a good
19:58
start. Yeah. Really good start. It'll keep you
20:01
going, essentially. Yeah. So in your case, essentially,
20:04
there was a part where you were told that a surgery
20:08
would need to happen, but then you had an emergent
20:10
surgery, which kind of just crept up on you and
20:13
you didn't really have any say in the matter,
20:14
right? It was a life -changing event. To the
20:18
people out there who know that they may have
20:22
to undergo surgery for a permanent ostomy, who
20:27
are afraid, who might be embarrassed, who are
20:31
just completely in the unknown of what life will
20:34
be like, what is your message to them? What would
20:39
you tell them to sort of calm them down a little
20:42
bit based on your own experience? It will be
20:44
okay. That will be my main thing. It will all
20:47
be okay. It may not, you know... fix overnight
20:51
it may take longer than others certainly don't
20:55
compare to other people with a stoma but you
20:59
also that community within social media is amazing
21:03
if you need to lean on people who will understand
21:05
but I would definitely say it will get better
21:09
um you will get a life and you'll be able to
21:13
live as normal as you can there will be times
21:17
obviously there'll be bad days but There'll be
21:20
more good days than bad days. That's what I would,
21:22
yeah, that's the biggest thing that I think I
21:25
can take from it is I now can't really like,
21:29
it takes a lot to reflect and think, oh, actually
21:31
that was a bad day because now there's so many
21:33
better days than there was previously. So from
21:36
my experience, that's what I would say that there
21:39
is a light at the end of that tunnel and you
21:41
are going to, you will get there. A lot of self
21:45
-care. positive reinforcement that comes from
21:49
within you, but then having sort of supporting
21:53
characters around you can be a large contributing
21:56
factor on how well you deal with the situation.
21:59
You mentioned that your family was there for
22:02
you, especially also your husband, which I couldn't...
22:06
deduct, I guess, that he was sort of the central
22:08
main supporting character for you, right? Yes.
22:11
Can you tell me a little bit about the different
22:14
ways that he helped you and also how he sort
22:19
of got, for the lack of a better word, onboarded
22:22
to Crohn's disease? Did you discuss this together?
22:25
Did you make plans together? Were you completely
22:27
able to be open with him about everything from
22:30
the beginning? What was that dynamic like with
22:33
him in particular for you? I think like I say
22:37
very luckily we've been together since we were
22:40
at school so um our relationship by the time
22:43
my symptoms with my Crohn's and then definitely
22:46
by the time I needed my stoma we were in a very
22:50
solid position and we were very open with each
22:54
other anyway so I think with my Crohn's I had
22:59
to he could obviously see the physical symptoms
23:02
but I did have to kind of try and explain to
23:07
him the exhaustion, you know, all that side of
23:10
it. But when it came to my stoma, he was the
23:13
one that was kind of saying that I needed to
23:16
go for it when I was kind of against it, because
23:18
I think he could see the bigger picture after
23:22
the surgery, whereas I was very stuck on just
23:25
the surgery and I couldn't see the life after
23:27
a surgery. Whereas for him, like I say, We didn't
23:32
go out much anymore. We didn't go anywhere together
23:34
because I was so worried about needing to go
23:36
to the toilet. So he was really supportive with
23:40
listening to me and not pushing me, but also
23:44
trying to show and explain to me what he felt
23:49
would be the positives with it, I guess. And
23:54
basically what you just said there, because I
23:56
was going to ask you, what would you tell people
23:58
who know somebody with Crohn's or who knows somebody
24:01
who has to go through surgery, how should they
24:03
behave? But I think they should just follow what
24:05
your husband did, right? I mean, it really seems
24:06
like he had it down and the right attitude. Yeah.
24:11
Or is there anything else? Yeah. Yeah. And I
24:13
think everyone's going to react differently to
24:16
it. So I think it's just remembering that. just
24:20
to be a supportive person there and support that
24:23
person because it's a lot for the individual
24:26
that's going through it it's obviously a lot
24:28
for everyone around them as well but yeah I think
24:31
my whole family were just on board they were
24:35
there they they got me little care packages they
24:38
helped me every step of the way and I think that
24:41
goes that goes a long way goes a very very long
24:44
way we As IBD warriors, we often have explaining
24:50
to do. And most of the time it's to educate people,
24:54
to help them understand. Sometimes it's to sort
24:57
of fight back against some very common misconceptions.
25:01
I would like to hear from you what you think
25:05
are common misconceptions in regards to Crohn's,
25:09
but then also to living with a stoma. With Crohn's,
25:14
I'd say... The massive common misconception is
25:17
it's just about going to the toilet and pooing.
25:21
And I certainly, it's a lot more than that. Like
25:25
I say, it drains you, the fatigue, the mental
25:30
side of it. There's so much more to it than just
25:33
what people see as the physical symptoms. And
25:38
I think that's quite an important thing because
25:40
lots of people also like to then joke about it.
25:43
I know when I was going through it, some of my
25:45
close relatives and stuff might joke and say
25:48
oh well you're just always stuck on the toilet
25:50
but that can be quite then mentally hard for
25:52
someone who there's a more to it and then with
25:55
the stoma I guess like I said earlier I feel
25:58
like the big thing is that it's something you
26:02
get when you're older it's for older people it's
26:04
smelly it's not very clean and it's totally not
26:08
that obviously anyone can get affected from a
26:12
baby first into this world until the end of our
26:14
lives but also the way that the technology and
26:18
the medical world is going it's not smiley it's
26:23
not it's you know you don't notice it and everything
26:27
so i guess they're the main for both of them
26:29
i guess yeah no absolutely and and i think i
26:33
think some of those misconceptions they also
26:35
freak people out especially those who will have
26:39
to look well towards a life with a stoma. And
26:44
I know everybody's different. Everybody has different
26:46
challenges. But tell us a little bit about...
26:52
what life is like really with the stoma, right?
26:55
Because I mean, some people they deal with rashes,
26:57
some people they're afraid, you know, of leaks.
26:59
What are your techniques? Do you experience any
27:02
of those issues? And what would you tell people
27:04
who are concerned primarily really about the
27:06
factors surrounding the actual stoma and the
27:09
sort of the changing of it, the maintenance?
27:12
Yeah. So, I mean, it is daunting and there's
27:15
no point taking that away from an individual.
27:17
I think you're entitled to feel scared and daunted
27:20
with that first bit. But I think, like I say,
27:23
the more you live with it, the more it just becomes
27:27
second nature. I remember my bag changes when
27:30
I first had my stoma would take me 10, 15 minutes.
27:33
Now, I think it only takes me a minute, if that,
27:36
like it's such a quick process. It takes time,
27:40
but you get there. I think in England we have
27:45
stoma nurses, which I assume everywhere has.
27:48
I would lean on them as much as possible because...
27:51
I had a lot of irritation around my stoma. The
27:54
skin was very rashy and sore. And it just takes
27:57
finding the right supplies that work for you.
28:00
But again, like I say, there's so much out there
28:03
that there's always something that you will find
28:05
that will help soothe it. Leaks, that can be
28:09
a challenging one. Many a times I've woke up
28:12
letting my own poo during the night. It isn't
28:15
the easiest. But again, I think... Sometimes
28:21
just kind of being prepared. So I like to sleep
28:24
with mattress protectors and everything underneath.
28:28
So I know that when it does happen in the night,
28:30
I can just take them away and it means it's a
28:33
bit of a quicker process to clean up. During
28:35
the day, you start to get to the point where
28:38
you can tell if something, if it's starting to
28:40
leak, it gets quite itchy where it's like burning
28:42
and you can kind of tell by the signs. So I think
28:46
really, unfortunately, it's just living with
28:48
it and then you start to know your own. signs
28:51
but definitely not to get like give up with each
28:57
stage there will always be a way around it there's
29:02
been times when I've literally had to change
29:05
my bag six times because it's leaked and I've
29:07
been in absolute tears thinking this is it it's
29:10
never gonna I'm never gonna have a life but actually
29:13
then I've got in contact with my stoma nurses
29:15
we found new products they've worked great and
29:18
then touchwood it's been absolutely fine and
29:22
i haven't had many leaks so yeah i think it's
29:26
just working with the people around you to help
29:29
you and finding the right stuff for you but you
29:32
will get there So it's not just about not losing
29:38
courage and persisting, but about seeking professional
29:41
help if that's available. I like what you said
29:43
there. I think it's true that I learn more and
29:47
more about ostomy nurses that are really there
29:51
to help people and share tips and tricks. So
29:55
it's not just about... you know taking all the
29:59
burden on one's own shoulders but to open up
30:03
and have the courage to just seek out help because
30:04
typically at least most places help is there
30:08
to you know to guide you for the most basic things
30:13
like changing the bags or finding the right products
30:17
definitely and I guess the thing is to remember
30:19
that they've seen everything because there's
30:21
times when you think you don't want to go because
30:25
you know you feel embarrassed with your stoma
30:27
nurses but actually they've seen everything they
30:30
know everything so and if they don't they will
30:34
get they will find the help for you and so yeah
30:37
I would say they have been a really good main
30:40
protocol and then of course anyone else in the
30:43
community whether you've got people you know
30:46
or reaching out to people online can really help
30:49
as well with sharing what products work for everyone
30:51
what stuff might help that really helps as well
30:54
If I approach you and I tell you life with a
31:00
stoma, it's got to be so limited what I can do.
31:04
What's your response? It's definitely not. I
31:09
honestly thought the same, but actually I traveled
31:14
more after my stoma surgery once I'd recovered
31:17
than I had in the last like five years. So I
31:20
saw more of the world. since because I can control
31:25
my stoma more I'm able to empty it before I go
31:28
somewhere it can fill up and I can then get to
31:31
a toilet without a rush I'm able to now go to
31:36
the cinemas and watch a whole movie and not have
31:39
to get up and go to the toilet yeah I just think
31:42
that's one of the key things is it's definitely
31:45
not you you get so much back in my opinion to
31:49
what I did when I had my Crohn's and it was in
31:53
a flare and even though I still have Crohn's
31:57
because I have my stoma it I have more control
32:03
myself than I did before so yeah I would definitely
32:07
say no that's not that is not true Very, very
32:11
good. And this no is actually a very encouraging
32:14
no, right? Because like you just said, I think
32:18
your life has most likely changed a lot since
32:22
the time where you were experimenting with biologics
32:25
and building resistance. And I'm sure, like you
32:29
just mentioned, you're able to do so much more
32:31
than when you try to experiment with treatments.
32:35
If you could go back to the day you were diagnosed
32:39
and speak to your 18 -year -old self, what would
32:44
you say? I would just tell her that everything's
32:49
going to be okay. Everything will work out and
32:52
you're going to be okay. You've got this. And
32:56
then we want to end by looking forward. And it's
32:59
more speculating than... sort of making short
33:03
statements, but I would like to hear from you.
33:08
Do you think that in our lifetime, we will come
33:11
across a cure for IBD? I hope we do. I think
33:17
we're forever moving forward. The stuff that
33:21
we... years ago obviously weren't able to control
33:26
whereas now we are able to cure things even with
33:29
the world of IBD and stomas they've evolved so
33:35
much since there's always new drugs and stuff
33:38
so I like to think that we might get to the point
33:41
where we can have something that will cure it
33:45
or at least prevent it happening Yeah, I like
33:49
to think. I mean, I don't know if I can swear
33:52
that it definitely will happen, but I would hope
33:55
for generations to come that they don't have
33:58
to go through half the stuff that our generations
34:00
have had to go through. A positive outlook. It
34:04
can help. A positive outlook is what we like
34:06
to end on, on the show as well. And I want to
34:11
commend you for what you're doing online as well.
34:14
Every time I see people like you who open up
34:18
to the world about... their condition, living
34:21
with a stoma. I feel super inspired and I do
34:25
know that it really is making a difference in
34:27
other people's lives, especially people who go
34:30
through the same thing. So keep doing what you're
34:32
doing because I think it's awesome. And I also
34:34
want to thank you so much for talking to me today.
34:37
This was a very inspiring conversation and I
34:40
wish you nothing but the best and continuing
34:41
luck and hope that the Crohn's stays under control.
34:44
And thank you again for... for being with me
34:47
today. No, thank you very much for letting me
34:49
share my journey. And if anyone ever needs to
34:52
reach out, I'm here as an open to help anyone.
34:55
So yeah, thank you for this opportunity. That's
34:59
it for today's episode of Kaleidos Unfiltered.
35:01
I'm Frank Tabering. And if this hit home or hit
35:04
your gut, do us a favor, subscribe to the show
35:07
and follow us at Kaleidos Unfiltered on YouTube,
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35:14
We'll see you soon. for more inspiring stories
35:16
from the bathroom floor.