It was so hard because I kept thinking okay you
know I'm alright at the moment but tomorrow I
could be have a flare and I ended up it took
such a toll on my mental health because I was
just sort of struggling thinking I don't know
how it's going to be that I have actually been
on antidepressants now for six years because
I was in a very dark place thinking that the
colitis was controlling my life thinking If I
was making plans, I'd have to cancel everything
because of how I was feeling. And it was so tiring
putting on that clown face all the time. This
is Jess, who got diagnosed with ulcerative colitis
at age 32 in New Forest, UK. Jess's symptoms
were first dismissed as IBS. But when the bleeding
and weight loss spiraled out of control, she
knew she faced an even uglier beast. Today, Jess
tells us how she ended up with a stoma. a new
mindset and a mission to help others through
the struggle that is IBD. This is the Colitis
Unfiltered podcast. My name is Frank Tabering
and Jess, welcome to the show. Hello, thank you
for having me. So Jess, ulcerative colitis, that
was your diagnosis. Let's go back to a little
bit before and how it all started. Tell me a
little bit about... When you noticed that something
was wrong or what your first symptoms were? So
going back, I always remember when I was probably
in my 20s, I always sort of had tummy problems.
And then I'd go to the doctors and that and they
would always say to me, it's IBS. But I could
just never really sort of... get that under control
but i just thought maybe it was my diet maybe
um it might have been something to do with environmental
factors i don't know and then um two years previous
to myself getting diagnosed my brother got ulcerative
colitis in 2009 and then he was rushed to hospital
and then one day it was just so random i um Just
ended up, out of nowhere, I felt okay. I just
ended up passing mucus. And I literally, I thought
I'd actually messed myself. I was laughing and
I thought, what's this? And then from there,
I then started, over the next couple of days,
I started feeling really tired. I then was starting
to pass blood. I was like in pain. And then from
there, it sort of set the ball rolling where
I started feeling unwell. I spoke to my brother
and he was like, it sounds like maybe you should
go to the doctors, go to A &E. But I was like,
no, it can't be. But I then set the process and
it took four months for them to diagnose me because
I first of all went to the doctor. I had an internal
examination. They then were giving me some suppositories
at first. Then they were basically just saying
that I had to wait to have a camera. to be assessed
on what it was. So it took four months for the
diagnosis to happen? Yes, because I had to wait
for the camera appointment to come through. But
in my mind, I sort of knew, I was thinking because
I was losing blood every day and I was like losing
weight, I was sort of understood all the symptoms.
It was like I sort of knew and I kept phoning
the hospital thinking, have you got any cancellations,
anything? Because I was at the point where I
was like, I was in so much pain and losing so
much blood and weight, etc. that I was just so
desperate for the camera. And as soon as they
gave me the camera, they told me straight away,
yes, it is that. So most people, when they're
diagnosed with IBD, colitis, or Crohn's, they
are really not familiar with the disease. In
your case, having an older brother who has colitis
as well, you were aware of what it was. So when
the doctor broke the news to you that you also
had ulcerative colitis, as somebody who was familiar
with the term, what went through your mind? Well
I was really like I was just thinking oh my god
no I just at the time I was I was in so much
pain thinking how can I navigate this how can
I live with this because my brother has never
had it as severe as me so I was like thinking
god I don't remember him saying about how much
he was bleeding like this and then I kept seeing
him that he was okay and his flare -ups weren't
so bad so I was thinking but why is it sort of
affecting me even more. and then just mentally
it just took a really big toll on me mentally
and so you mentioned it navigating flares how
did that continue for you now post of your diagnosis
talk To me, a little bit about treatment plans
and then how the disease or potentially disease
management evolved for you. So from then, as
soon as they told me that I'd had colitis, they
put me on the prednisolone steroids, gave me
the rectal foam, the suppositories. I hated the
steroids, but I knew that I had to be on them
because I was just like, just... in so much pain
but I then worked very good um to me um and I
met I had a lot of time off work I think all
you know I was off work for about 10 weeks and
then I went back to work very slowly sort of
reduced hours and then it was just that process
of weeding myself off starting on the um produce
alone at like eight tablets a week and then weaning
down and then once that flare had gone and I'd
got my head around thinking okay now I have this
and then it's like I don't know when my next
flare will be could be and it was always that
unknowing of Could it be tomorrow? Could it be
in a month? So sort of from there. But in my
mind, I kept thinking, right, well, I just have
to prepare myself at all times. Because how it
comes on so quick, you are just not at all prepared
for when you get a flare up. And obviously, that
treatment path didn't really... pull you into
remission right how did how did this continue
so from there for some reason every three years
i would then have a flare and then i was back
on like the predisalone and um then it would
sort of that would help and then over time i
become just so immune to the predisalone so then
they set me on i was on um i'm really bad all
the long names but they put me on all the different
medications i was on the drip infusions i was
on the adlimab um just everything and every time
i was going on i was on one for infliximab for
quite a while on the infusions but i would after
about i would probably say i was on that maybe
for 8 to 12 months i then started getting flare
up and i could you you just know your body and
my first sign of a flare up is always the tiredness
the thirsty the everything like that and i would
just then Went to doctors and then obviously
see my eye because my IBD team at the hospital
were brilliant. And I would like saying, you
know, I'm feeling like I'm getting like my hands.
I had really bad pains in my hands, etc. So then
they were like, right, come off of that. Let's
try you on something else. So then it was just
like a process. Then basically it was just over
time, over years. So many different medications
over years that I was on. To the point where
I was just thinking, no, I'm not going to find
anything, anything to help me. So you did then
experience remission periodically, right? Yes.
For a number of months. Yeah. But then with flares
coming back, starting a new medication, going
through the whole thing again. Yeah. How did
you manage to hold on to this hope that one day
you would actually find something that really
works, right? And how did you also at the same
time deal with the fear of, well, when is the
next flaring flare going to hit me? Yeah, it
was so hard because I kept thinking, okay, you
know, I'm all right at the moment, but tomorrow
I could have a flare. I ended up, it took such
a toll on my mental health because I was just
sort of struggling, thinking I don't know how
it's going to be that I have actually been on
antidepressants now for six years because I was
in a very dark place thinking that the colitis
was controlling my life, thinking... If I was
making plans, I'd have to cancel everything because
of how I was feeling. And it was so tiring putting
on that clown face all the time. And they said
to me, the very end result would be that you
may need a stoma bag. And I was absolutely not.
No way. I kept thinking that would be just...
At the time, the worst thing that I could think
of. So I was like, I've got to try everything.
So I was really into yoga. I was walking a lot,
just trying to do everything. But it was very,
when people would say about, well, what causes
a flare up? And I just do not know. But it was
so weird that I would always then have a flare
up around sort of September, October. So I don't
know if it was like a seasonal change, but it
was always be around that time. So you said.
You were sort of afraid that colitis was really
controlling your life. Absolutely. And it did.
How did you fight back? Going on antidepressants.
It's really bad. But I just felt like I was fighting
and fighting, trying to stay positive. But when
I'd come home and feel so tired and just thinking,
oh my God, I just don't know when I'll get another
flare. But then my flares would last a lot longer.
and then because I was on this medication and
then that medication wouldn't work then they
try me on something else and then I might something
might work and I'll be like oh my god I've found
that I've actually found it but I would always
try to research as well and read into what was
available but when you just read that there was
just no cure I kept thinking oh my god I've got
to try and change my mindset. So I was doing
everything I possibly could to try and stay positive,
which was hard. And obviously when your medical
team first mentioned surgery, living with a stoma
potentially, you were completely opposed to the
idea. Sometimes we can try and fight back as
much as we can and yet... in the end lose that
battle and i don't want to spoil it here but
in your case yeah you did right yeah so take
us a little bit through how you warmed up to
the idea of a stoma and then eventually also
what caused you to to have surgery or need to
have surgery yeah yeah okay so flares on and
off and then it got to the point where it was
like every three years and then it was getting
sort of down then to about every year and I remember
I started having a flare at this one particular
time. And it was at this time I had a lot of
things coming up. I was on holiday and I could
feel my body changing. And in my head, I was
thinking, oh, no, I can't deal with this now
because my sister was about to get married. I
was helping my other sister move. So in my head,
I was like, I've got to keep going, keep going,
which I did. And the moment it was like I sort
of. did all of that it really hit me my flare
and then went to see my IBD team and they said
okay we need to have a camera to see what's going
on so whilst I was waiting for this camera one
night I just had this terrible pain in my left
side and they my husband took me to A &E I'd
sat there for six hours And they then told me
that I've got to wait another six hours to see
a doctor. But I said to them, and this was now
about two o 'clock in the morning. And I said,
I can't sit here anymore because I suffer with
really chronic fatigue. I just was at that wit's
end thinking, I don't know what's happening.
Then the next morning, I had emailed my nurse
to say, I have been, is there any way you can
sort of just chase the camera up for me? She
rang me back straight away saying, come to the
hospital now. We will just fit you in. So I went
to the hospital, had the camera, and then I woke
up in recovery. And all I got told was, you are
going to, you need to see a doctor. You've got
to stay in. The doctor came and said, you need
surgery. So it was like, then I was like, oh
my God. So I hadn't had a chance to really think
about it. They had always mentioned to me, there's
only a couple of more options left of with this
new drug that is coming out. That's just been
okayed by NICE. But he said, I don't know how
long you'll be waiting for it. And I was saying
to him, I don't want a bag. I don't want a bag.
So when obviously I got told, you've got to have
this surgery. I then was at the point where I
thought, I don't want it, but I want it. I can't
do, I cannot live like this anymore. And then
how quickly did the surgery happen? Are we talking
hours, days, weeks? Okay, so I was in hospital.
They put me straight back on the prednisolone
because they said that we need to see if we can
control it. And they were pumping me with just
so much of that. And that was for about a week
because they wanted to try and calm the flare
down. At the time, they said, we'll get a stoma
nurse to come around to you, a surgeon to come
around to you. I was just like, I can't believe
all this is happening because I felt like it
was at my control. But what's really ironic is
that previously when I've had flares, I was so
poorly that at that moment I thought, you know
what, if I need a bag, I'll have it. I have it.
I just can't deal with this anymore. So when
I was there, they had made me record. And I always
remember they'd said to me, can you record every
single time you go to the toilet? Being in the
first three days, I remember I looked and it
was like 88 times within three days. And it was
just, at that point, I was so weak. So I think
I was in for about two weeks before they then
said, right, okay, it's tomorrow. And yeah, so
then it happened. You, in one of your Instagram
posts, and if... I'm not mistaken, it might have
been in your very first one where you sort of
introduce yourself and your journey. You wrote,
and I quote, you found it difficult to even look
at your stoma at the very beginning, right? Yeah.
So obviously post -surgery, it's not just waking
up with a stoma, you know, your entire life is
going to change. How did you overcome this feeling
of not even, be able to look at it it was hard
because I had my surgery and I remember I was
thinking I've got to wait for my husband to come
because I didn't want to look down at all and
then um and I'd actually had one of the things
I used to do and I used to really burn myself
with a hot water bottle on my right hand side
so I had really bad scarring so I had that on
one side and then when I looked down and then
I saw it and it was like they didn't tell me
that when I would have a stoma bag that it would
be um see -through so I didn't and and like the
size of it they didn't I didn't know they were
going to do like six insertions in my stomach
it was just awful I was like I felt just disgusted
I felt just awful and thought how am I gonna
live with this it was awful but I then um was
all in all I think I was in hospital for about
six weeks because my surgery was okay but I had
a lot of infections and I was in um there was
at a point where I didn't know if I was going
to make it because it just I came home had and
it was that I was being really sick long story
short my stomach was dilating from my my from
my stomach stopped working sorry and it's I was
dilating from my stomach to my pelvis and it
was really touch and go so I was in hospital
very really dark place I came out again it was
I just thought I don't know how I'm supposed
to ever I was taking everything very literally
as in I was reading what you should wear, what
you should eat. And I didn't know your whole
diet changed. There's so much stuff that you
can't do. So, yeah, it took me a very long time.
I would say a good two months for me because
I was in a very, very dark place. Do you feel
like it's just one of those things where. Time
changes everything. Time basically pushes you
to accept your stoma, to accept, you know, who
you are now. Or how would you describe this transformation
from really hating this stoma to really accept
it as part of yourself, right? And then sort
of restart your life. Yeah. What do you think
sort of changed? Yeah. remember my um i was like
sort of housebound for about 12 weeks um my husband's
friend came around and he was said to me my mum's
got two bags actually one for bowel one for bladder
and i don't know why at that moment I just thought,
oh, my God, what I've got to sort myself out.
I need to stop feeling sorry for myself. People
have it so much worse. And then because the first
thing they always say is you need to name your
stoma as it's part of an acceptance. So I got
a name. I called it Cherry because it looks like
a cherry. And from there, I then reached out
to a company called Colostomy UK, my stoma nurse.
had said to me so i said to i'm struggling i
don't know anyone else i just i feel so alone
i was looking at things on social media which
were quite negative and it was putting me more
in a dark place and then customer uk said reach
out to there is some support groups so i did
go to one which is about 20 miles away and when
i was there I just thought, oh my God, you know,
this is like midweek. What about people that
are younger? What about people that want to have
this support, but nothing's nearer me? So that
was when I was like, do you know what? This stoma
has saved my life. It gave me back my life. And
that was when I was like, right, I'm going to
set up a support group because I needed it. And
yeah, so now... A year on and my stoma group
is going so strong. And it's amazing. And this
stoma group, we're definitely going to come back
to that. I want to ask you more about this. Now,
some time passed since your surgery. You've sought
some help. You're working on accepting it, sort
of reclaiming your life as well. What is life
like with a stoma for you today? amazing I never
thought I would say um yeah I feel like I am
I wish I'd had this years ago because it's just
now to um now I've navigated and I know how to
sort of work my way around the stoma it's so
nice to not have constant pain in my side to
not bleed to to to just have my life back I remember
the nurse said to me in hospital this is going
to be such a better quality of life for you and
I remember thinking are you joking how how is
this a better quality of life but now it honestly
honestly it is it's really really is how it's
just made my life so much better And that's exactly
what you want from this. That's the ultimate
goal. And even though we always say like, you
know, surgery is great, but it does not necessarily
count as a, you know, full -blown cure. Because,
you know, even living with a stoma, there's some
challenges that are attached to it. Tell me about
your struggles that you still kind of face maybe
day -to -day living with a stoma. You do still
have to, you have to make sure you chew your
food much more. There's certain things you can't
eat. You can't, even I used to sleep on my right
hand side. I had to learn to sleep on my left.
You go out and you think, oh God, what if I leak?
What if just, it's just that awful thinking,
oh my God, what if somebody can see it? But now
I'm just really trying to embrace it. and make
it my best friend because and it is what it is
if I do leak I think you know it is but it is
it is hard because as well with clothing you
have to be careful sort of with clothes because
certain things you but I'm really trying to navigate
that and to see and reach out to companies as
well to see what sort of is on offer out there
for people but I wear a hernia belt all the time
which they it's basically like a hernia support
belt so that really helps as well because and
one thing which they didn't tell me in hospital
was that you are more prone 80 80 percent more
prone to have a hernia even down to like I had
a chest infection when I was in the hospital
and it wasn't until my husband said, shouldn't
you put your hand over your stoma in case? And
it was. And that's when they said that's one
of the worst things for coughing, sneezing. So
it's just little things like that. Always making
sure I've always got electrolytes with me. I've
always got to make sure I've always got like
snacks because you've got to eat little and often.
So it's just, yeah, it's definitely. a different
way i've had to sort of navigate there's been
a question that's been that i've been dying to
ask and i'm going to have to open a parenthesis
for this but i want to make sure i want to ask
it now instead of forgetting so you have a brother
with ulcerative colitis you have ulcerative colitis
obviously your ibd journeys have been quite different
has there ever been a moment and i'm asking this
because you know you said that your brother managed
his disease better than you did. Has there ever
been a moment where you were angry at your brother,
where you felt like it was unfair, where maybe
you had felt envy towards your brother for being
better off with his colitis as opposed to you
having to go through this trauma of surgery as
well? I think back in the day, I was very like,
God, why can't I have it so minor like him? Like
he does still suffer now, but he is on different
types of medication and he sometimes is bleeding
and he's not. And then, but I've never, ever,
I've just feel myself that I'm very lucky now
to have had a stoma. So no, I would never, ever,
I've never looked at it like that. I've only
ever looked at it thinking I wish I had it as
minor as he had it at the time. But never any
resentment basically, just because. Yeah. Great.
Yeah. Thank you for sharing that. And that sort
of closes my parenthesis then. So looking back
now at your life with a stoma, especially because,
you know, we can agree that this was sort of
a traumatic experience for you at the beginning
and you sort of accepted it. You live with it
now. What do you wish you had known from day
one of living with a stoma? My God, I just wish
I knew that there was support there. I wish I
knew that there was somebody to talk to, that
it was going to be OK, that it's not nothing
disgusting. I wish that I just had somebody to
talk to. It's just it's yeah, I just really do.
And that's why it was so important for me to
set up this support group, because I felt so
alone. so so alone you know and it's so nice
to be able to talk to people that are on this
and it's like questions that you wouldn't be
able to ask your friends and family because they
don't really understand but you know like no
questions off limits and it's just really nice
to have that but yeah at the very beginning i
just wish i had someone there just to help me
and to say it's gonna be okay so let's talk a
bit a little bit about your support group If
I'm not mistaken, you sort of came up with the
idea after you actually visited an existing one,
right? That was just maybe a little bit too far
away from where you live. Tell me how this works.
Is this all in person? Is this virtual? Is it
hybrid? You know, how many people are in that
group? And what sort of topics do you discuss?
You know, just take us through that. And I want
to ask this question because most people today,
they sort of just... jump in to social media
for help. And that's fantastic, right? The communities
are exploding and there's real compassion, real
support online. But I think there's still sometimes
a difference between, you know, sitting on a
computer or messaging through a phone and literally
sitting across from somebody else. So explain
to us your support group and how you run it.
Yeah, so I went to that support group. Everybody
was... I don't want to say this without being
rude, but everybody was probably 70 and above.
I felt like, God, I wish I had somebody sort
of my age to talk to. Like I said, it was on
a Tuesday. So I thought it's really hard to keep
getting time off work to go. And it was like
20 miles away. I just thought, my God, wonder
what it would be like to just set up a group.
And I thought, I've got absolutely no idea. So
I contacted Colostomy UK and said, you know,
I was thinking about this. And they said, we'll
put you in touch with somebody that has run a
group before. So she rang me and said, we've
been doing it for so many years. I run it in
a village hall. So then what I did was I put
it out on social media. and just said, I had
to think of a name, and I just randomly come
up with Stomach Love, and just put it out there
to say, meet in this pub, and I'm going to be
there for like two hours, if you have a stoma,
or you want to just come along to chat, anyway,
I had like 11 people turn up, which I, and then
I'd said to them, I'm just going to talk about
my journey. We'll go around in a circle if you
want to share or if you don't want to share.
And people were going around saying everything.
And then from then I looked into actually a hall
that I hire now every six Saturday. So it's in
person. Anybody is welcome. Just if they don't
have a stoma, if they have a stoma, if a family
member wants to come along. So I'd say now I've
got about 35 members. And what I do is they come
along, we all sit around and I get speakers in
as well to talk about all different bags or we'll
talk about any conversations. I'll put an agenda
together and I will ask them what do they wish
to discuss. But the conversations really sort
of start flowing. You might get some people that
are not confident speaking out. So at the end,
what we do is I'll do like a little raffle and
I make sure we have good biscuits and tea and
coffee. And then we sort of can go around. speak
to each other one -on -one then if we want to
and um so yeah it's going really well and i've
had really good feedback from there so and it
just shows that there was obviously support that
was needed exactly you you're literally almost
taking the words out of her mouth i was just
going to say you know you said in your first
sort of meeting you know 11 people showed up
and i'm not familiar with the population of the
town that you're living in but it just kind of
also goes to show that a lot more people that
you might think are touched by IBD, right? That's
really inspiring. I mean, you're inspiring me
right now to basically try and set up the same
thing in my town here. So it's really, really
great. And I really do hope that everybody's
listening, you know, if they don't have a support
group yet and are open to talk about it, to actually
maybe, you know, seek. these kinds of initiatives
or launch them by themselves. Because again,
online support is really fantastic. And I think
a lot of people find a lot of answers, you know,
two questions online, but there's just something
about being in the same room and looking at a
person in the eye, you know, and just knowing
that, you know, that person understands completely
how I feel, what I'm going through. There's no
replacement for that. So that's really fantastic.
Really fantastic. So support groups, that's great.
It helps others. It also helps you. So I think
it's probably also like self -therapy for you.
So let's shift sort of like into sort of what
I call the third act, which is sort of present,
future, but also a little bit more sort of introspection
here. Looking back at your entire IBD journey,
even before surgery and now after, how do you
think that colitis and Living with a stoma has
changed you as a person. I think now it's changed
me for the better because I felt I'm quite a
confident person. But for years, I just felt
like I was just losing myself and thinking that
I honestly thought, I don't know how I can deal
with this pain and I cannot deal with having
this. There were certain points where I was so
dark that I just thought, I don't want to be
here. It was just thinking, how can I? just manage
this pain how can I just ever feel normal and
I think where now I've since having my stoma
and noticing the change in my body that I've
now there's so many things now that I'm doing
and it's amazing I have this like newfound energy
as well because I feel like I haven't had energy
for 14 years and it's also as well one thing
that I will say is that I have actually got to
have more surgery as my colitis is still in me
basically my rectum my rectal stump that I've
got they've less say 10 centimeters I had a camera
in January and they told me that it's still very
ulcerated and I'm due to see my surgeon in three
weeks and that's something that I'm not really
looking forward to but I know it will be something
that has to happen and I've got my group there
um so you know and again I'm just very lucky
so I look at my stoma now as in this was meant
to be it was just it had to be because and like
I said I've really opened my eyes up to appreciating
life as well I know it sounds so cliche like
we all say oh life's so short but when I was
in hospital and I told myself if I if I made
it out of here that I would learn to roller skate
and I've joined a roller skate in Derby and I've
gone back to yoga and I've gone back horse riding
and it's all these things so in my mind it's
like oh my god I should have done all this before
but it's like proving a point to myself now that
where I feel this newfound energy that it is
life is too short and the pain that I had pain
for so many years that now I've just so nice
to be pain free Well, you said that life is short
and everybody says and keeps saying that life
is short. And I got to tell you, we all say that
because that is a fact, right? And I think it's
perfectly fine to repeat facts over and over
again. And I think what you said is really great
because earlier you mentioned that when you had
your first surgery, even though you had support,
you wish you had support from people that would
probably understand you better. Now that you're
facing another surgery potentially or most likely.
Just look at the change, right? You have that
support now, you know, you after the surgery,
like, let's say if it happens, you know, you'll
be able to go back and say, well, this time around,
I had all the support that I needed. And that's
a truly great thing. So speaking of support,
IBD does not impact. us the people who actually
have and live with the disease but it does impact
the people around us and you mentioned that you
know you have a husband you were married as you
went through this so how did colitis affect your
your close relationships you know husband close
family members i think that um i was very good
at putting like my clown face on and just because
i thought i'm sick of hearing myself saying i'm
tired i don't feel well and just not having the
energy but i think I would then get to a point
where I'd be like, I actually can't have no energy
to do anything. And I've got two children and
my husband at home with me and they have just
been amazing. And, you know, I do have really
good friends and family that I could talk to.
But when I'm poorly, like when I'm in hospital,
I take myself away because I don't want people
to see me like that. So that's why I will then
just sort of go within myself, even though I
know they're there and that I can talk to. but
yeah it's just been it's very important to speak
to speak out but um yeah i think for years now
when i think about how my children and my husband
and i've seen that and i know they really suffered
seeing me um when it was very touch and go me
being in hospital and now they see a different
side to me now and how they like oh my god you're
just so different yeah i know that's that's a
really positive development and um Speaking of
speaking out, you as someone who faced surgery
and absolutely did not want that to happen, what
would your words of advice be to people who find
themselves in that same situation, right? Like
who are unable to get their colitis under control
and who might be facing surgery pretty soon?
What would you tell those people? That it's okay.
It sounds so scary. It's so daunting. Just really
research, look into it, reach out to people.
If there is anyone that they know, but sometimes
don't go on. These forums sometimes can be quite
negative. know that there is help out there I
felt like at the beginning I didn't know I did
not know about stomas I didn't know what they
were and now I feel like it's everywhere and
I'm really glad that it's everywhere I don't
know if it's everywhere because now I have one
and um I'm seeing it everywhere but like I would
talk about stomas and colitis all day long because
I feel like I want people to know that There
is help there. But that's the one thing I did.
I wish I, because I remember they gave me a leaflet
and it would say, you've got to wear this certain
clothes and you've got to eat this. And so I
was very literal to the book. And it only took
me, actually, with my group, I wouldn't eat lettuce
for, oh God, nearly a good eight months because
I read once I would get a blockage. Anyway, I've
ate lettuce. It's absolutely fine. But it was
these things that I was reading. So that's why
I would say don't take anything literal. Just
reach out to, even though you see these things,
reach out to people on social media and, you
know, just ask them as well and say, you know,
can I, I have had some people ask me, I'm going
to have surgery. Any tips? And, you know, I would
just say, just also be kind to yourself because
there's a reason and it's saving you. and yes
i didn't want it but i have got it now and you
know i have it and you've got to accept it and
we all adapt to change because we have to absolutely
absolutely so that's what you would say to others
but if you could go back to the day that you
were diagnosed and speak to yourself what what
would you say to to yourself i would say it's
okay It's going to be tough, but you will get
there. It will be hard, but you've got to find
that inner strength. And no, I always feel that
people with Crohn's and colitis, they find this
inner strength somehow and they get through their
flare -ups, get through the day just by getting
up and getting washed and just seeing people.
That's hard. So I would just say it's going to
be okay. With everything that you've seen, with
everything that you've experienced in regards
to IBD, colitis, Crohn's, do you think that we
will see a cure to this in our lifetime? I really
don't know. I would absolutely love there to
be. I really, really would. That's why I try
to work along with Crohn's and Colitis UK. And
I'm about to be actually a volunteer for Colostomy
UK so I can go out to events and things and talk
about things because I would love there to be
a cure. But then if the only cure would be that
you would need a bag, then I would say that that's
the only cure and it would be the best cure.
But surely one day, I just hope there will be
one day. No, and I think we all do. And I think
while we wait for that, no matter how long it
takes, I think we need to continue to educate.
We need to continue to raise awareness. We need
to continue to advocate for everybody living
with IBD and helping each other out. So I think
you are certainly one of these people who are
doing all of these things and you're doing them
the right way. And I can only urge you to continue
to do that because whether you're touching one
person or two or three or 11, you know, the turnout
of your very first meeting, it's making a difference.
It really, really is. So I want to thank you
for doing that, number one. And I also want to
thank you for taking the time to speak to me
today about your journey. It's very, very inspiring.
Certainly gave me a lot of food for thought as
well. So what I wish for you is... you know,
continuing success with your support group, but
also all the best in your still continuing IBG
journey as well. So thank you so much, Jess.
Thank you so much. And thank you so much for
taking the time to talk to me. I really appreciate
it. Me too. Thank you. That's it for today's
episode of Colitis Unfiltered. I'm Frank Tabering.
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