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