Latest / Crohn's & Colitis Unfiltered / IBD, surgery and acceptance: Jess’ long colitis battle

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IBD, surgery and acceptance: Jess’ long colitis battle · Crohn's & Colitis Unfiltered

0:02
It was so hard because I kept thinking okay you
0:05
know I'm alright at the moment but tomorrow I
0:07
could be have a flare and I ended up it took
0:11
such a toll on my mental health because I was
0:14
just sort of struggling thinking I don't know
0:16
how it's going to be that I have actually been
0:18
on antidepressants now for six years because
0:20
I was in a very dark place thinking that the
0:23
colitis was controlling my life thinking If I
0:27
was making plans, I'd have to cancel everything
0:29
because of how I was feeling. And it was so tiring
0:32
putting on that clown face all the time. This
0:35
is Jess, who got diagnosed with ulcerative colitis
0:38
at age 32 in New Forest, UK. Jess's symptoms
0:43
were first dismissed as IBS. But when the bleeding
0:46
and weight loss spiraled out of control, she
0:49
knew she faced an even uglier beast. Today, Jess
0:53
tells us how she ended up with a stoma. a new
0:56
mindset and a mission to help others through
0:59
the struggle that is IBD. This is the Colitis
1:02
Unfiltered podcast. My name is Frank Tabering
1:05
and Jess, welcome to the show. Hello, thank you
1:08
for having me. So Jess, ulcerative colitis, that
1:13
was your diagnosis. Let's go back to a little
1:17
bit before and how it all started. Tell me a
1:20
little bit about... When you noticed that something
1:23
was wrong or what your first symptoms were? So
1:27
going back, I always remember when I was probably
1:30
in my 20s, I always sort of had tummy problems.
1:34
And then I'd go to the doctors and that and they
1:37
would always say to me, it's IBS. But I could
1:40
just never really sort of... get that under control
1:43
but i just thought maybe it was my diet maybe
1:46
um it might have been something to do with environmental
1:50
factors i don't know and then um two years previous
1:54
to myself getting diagnosed my brother got ulcerative
1:57
colitis in 2009 and then he was rushed to hospital
2:01
and then one day it was just so random i um Just
2:08
ended up, out of nowhere, I felt okay. I just
2:13
ended up passing mucus. And I literally, I thought
2:17
I'd actually messed myself. I was laughing and
2:20
I thought, what's this? And then from there,
2:23
I then started, over the next couple of days,
2:27
I started feeling really tired. I then was starting
2:29
to pass blood. I was like in pain. And then from
2:33
there, it sort of set the ball rolling where
2:35
I started feeling unwell. I spoke to my brother
2:38
and he was like, it sounds like maybe you should
2:44
go to the doctors, go to A &E. But I was like,
2:46
no, it can't be. But I then set the process and
2:51
it took four months for them to diagnose me because
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I first of all went to the doctor. I had an internal
2:55
examination. They then were giving me some suppositories
3:01
at first. Then they were basically just saying
3:04
that I had to wait to have a camera. to be assessed
3:08
on what it was. So it took four months for the
3:12
diagnosis to happen? Yes, because I had to wait
3:14
for the camera appointment to come through. But
3:17
in my mind, I sort of knew, I was thinking because
3:19
I was losing blood every day and I was like losing
3:23
weight, I was sort of understood all the symptoms.
3:26
It was like I sort of knew and I kept phoning
3:29
the hospital thinking, have you got any cancellations,
3:31
anything? Because I was at the point where I
3:34
was like, I was in so much pain and losing so
3:36
much blood and weight, etc. that I was just so
3:40
desperate for the camera. And as soon as they
3:43
gave me the camera, they told me straight away,
3:44
yes, it is that. So most people, when they're
3:47
diagnosed with IBD, colitis, or Crohn's, they
3:50
are really not familiar with the disease. In
3:52
your case, having an older brother who has colitis
3:56
as well, you were aware of what it was. So when
3:59
the doctor broke the news to you that you also
4:03
had ulcerative colitis, as somebody who was familiar
4:05
with the term, what went through your mind? Well
4:09
I was really like I was just thinking oh my god
4:12
no I just at the time I was I was in so much
4:15
pain thinking how can I navigate this how can
4:19
I live with this because my brother has never
4:21
had it as severe as me so I was like thinking
4:24
god I don't remember him saying about how much
4:26
he was bleeding like this and then I kept seeing
4:29
him that he was okay and his flare -ups weren't
4:32
so bad so I was thinking but why is it sort of
4:35
affecting me even more. and then just mentally
4:39
it just took a really big toll on me mentally
4:41
and so you mentioned it navigating flares how
4:46
did that continue for you now post of your diagnosis
4:49
talk To me, a little bit about treatment plans
4:52
and then how the disease or potentially disease
4:56
management evolved for you. So from then, as
4:59
soon as they told me that I'd had colitis, they
5:01
put me on the prednisolone steroids, gave me
5:03
the rectal foam, the suppositories. I hated the
5:08
steroids, but I knew that I had to be on them
5:10
because I was just like, just... in so much pain
5:14
but I then worked very good um to me um and I
5:18
met I had a lot of time off work I think all
5:20
you know I was off work for about 10 weeks and
5:22
then I went back to work very slowly sort of
5:26
reduced hours and then it was just that process
5:29
of weeding myself off starting on the um produce
5:32
alone at like eight tablets a week and then weaning
5:35
down and then once that flare had gone and I'd
5:39
got my head around thinking okay now I have this
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and then it's like I don't know when my next
5:45
flare will be could be and it was always that
5:47
unknowing of Could it be tomorrow? Could it be
5:51
in a month? So sort of from there. But in my
5:53
mind, I kept thinking, right, well, I just have
5:55
to prepare myself at all times. Because how it
5:59
comes on so quick, you are just not at all prepared
6:05
for when you get a flare up. And obviously, that
6:09
treatment path didn't really... pull you into
6:13
remission right how did how did this continue
6:15
so from there for some reason every three years
6:18
i would then have a flare and then i was back
6:21
on like the predisalone and um then it would
6:25
sort of that would help and then over time i
6:28
become just so immune to the predisalone so then
6:30
they set me on i was on um i'm really bad all
6:34
the long names but they put me on all the different
6:36
medications i was on the drip infusions i was
6:39
on the adlimab um just everything and every time
6:44
i was going on i was on one for infliximab for
6:46
quite a while on the infusions but i would after
6:50
about i would probably say i was on that maybe
6:52
for 8 to 12 months i then started getting flare
6:57
up and i could you you just know your body and
7:00
my first sign of a flare up is always the tiredness
7:03
the thirsty the everything like that and i would
7:07
just then Went to doctors and then obviously
7:11
see my eye because my IBD team at the hospital
7:13
were brilliant. And I would like saying, you
7:15
know, I'm feeling like I'm getting like my hands.
7:18
I had really bad pains in my hands, etc. So then
7:22
they were like, right, come off of that. Let's
7:24
try you on something else. So then it was just
7:26
like a process. Then basically it was just over
7:29
time, over years. So many different medications
7:32
over years that I was on. To the point where
7:36
I was just thinking, no, I'm not going to find
7:38
anything, anything to help me. So you did then
7:43
experience remission periodically, right? Yes.
7:47
For a number of months. Yeah. But then with flares
7:51
coming back, starting a new medication, going
7:54
through the whole thing again. Yeah. How did
7:56
you manage to hold on to this hope that one day
8:00
you would actually find something that really
8:02
works, right? And how did you also at the same
8:04
time deal with the fear of, well, when is the
8:07
next flaring flare going to hit me? Yeah, it
8:11
was so hard because I kept thinking, okay, you
8:13
know, I'm all right at the moment, but tomorrow
8:16
I could have a flare. I ended up, it took such
8:20
a toll on my mental health because I was just
8:23
sort of struggling, thinking I don't know how
8:24
it's going to be that I have actually been on
8:26
antidepressants now for six years because I was
8:30
in a very dark place thinking that the colitis
8:32
was controlling my life, thinking... If I was
8:35
making plans, I'd have to cancel everything because
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of how I was feeling. And it was so tiring putting
8:41
on that clown face all the time. And they said
8:44
to me, the very end result would be that you
8:47
may need a stoma bag. And I was absolutely not.
8:51
No way. I kept thinking that would be just...
8:55
At the time, the worst thing that I could think
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of. So I was like, I've got to try everything.
9:02
So I was really into yoga. I was walking a lot,
9:05
just trying to do everything. But it was very,
9:08
when people would say about, well, what causes
9:11
a flare up? And I just do not know. But it was
9:13
so weird that I would always then have a flare
9:16
up around sort of September, October. So I don't
9:19
know if it was like a seasonal change, but it
9:21
was always be around that time. So you said.
9:25
You were sort of afraid that colitis was really
9:27
controlling your life. Absolutely. And it did.
9:30
How did you fight back? Going on antidepressants.
9:34
It's really bad. But I just felt like I was fighting
9:37
and fighting, trying to stay positive. But when
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I'd come home and feel so tired and just thinking,
9:45
oh my God, I just don't know when I'll get another
9:47
flare. But then my flares would last a lot longer.
9:51
and then because I was on this medication and
9:53
then that medication wouldn't work then they
9:54
try me on something else and then I might something
9:57
might work and I'll be like oh my god I've found
9:59
that I've actually found it but I would always
10:02
try to research as well and read into what was
10:06
available but when you just read that there was
10:09
just no cure I kept thinking oh my god I've got
10:13
to try and change my mindset. So I was doing
10:16
everything I possibly could to try and stay positive,
10:19
which was hard. And obviously when your medical
10:23
team first mentioned surgery, living with a stoma
10:27
potentially, you were completely opposed to the
10:30
idea. Sometimes we can try and fight back as
10:35
much as we can and yet... in the end lose that
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battle and i don't want to spoil it here but
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in your case yeah you did right yeah so take
10:45
us a little bit through how you warmed up to
10:47
the idea of a stoma and then eventually also
10:50
what caused you to to have surgery or need to
10:54
have surgery yeah yeah okay so flares on and
10:58
off and then it got to the point where it was
11:00
like every three years and then it was getting
11:02
sort of down then to about every year and I remember
11:07
I started having a flare at this one particular
11:10
time. And it was at this time I had a lot of
11:13
things coming up. I was on holiday and I could
11:16
feel my body changing. And in my head, I was
11:19
thinking, oh, no, I can't deal with this now
11:21
because my sister was about to get married. I
11:23
was helping my other sister move. So in my head,
11:25
I was like, I've got to keep going, keep going,
11:28
which I did. And the moment it was like I sort
11:31
of. did all of that it really hit me my flare
11:35
and then went to see my IBD team and they said
11:39
okay we need to have a camera to see what's going
11:43
on so whilst I was waiting for this camera one
11:47
night I just had this terrible pain in my left
11:50
side and they my husband took me to A &E I'd
11:55
sat there for six hours And they then told me
11:58
that I've got to wait another six hours to see
12:00
a doctor. But I said to them, and this was now
12:03
about two o 'clock in the morning. And I said,
12:05
I can't sit here anymore because I suffer with
12:07
really chronic fatigue. I just was at that wit's
12:10
end thinking, I don't know what's happening.
12:12
Then the next morning, I had emailed my nurse
12:16
to say, I have been, is there any way you can
12:18
sort of just chase the camera up for me? She
12:21
rang me back straight away saying, come to the
12:23
hospital now. We will just fit you in. So I went
12:26
to the hospital, had the camera, and then I woke
12:30
up in recovery. And all I got told was, you are
12:33
going to, you need to see a doctor. You've got
12:35
to stay in. The doctor came and said, you need
12:37
surgery. So it was like, then I was like, oh
12:41
my God. So I hadn't had a chance to really think
12:45
about it. They had always mentioned to me, there's
12:47
only a couple of more options left of with this
12:50
new drug that is coming out. That's just been
12:53
okayed by NICE. But he said, I don't know how
12:56
long you'll be waiting for it. And I was saying
12:58
to him, I don't want a bag. I don't want a bag.
13:00
So when obviously I got told, you've got to have
13:02
this surgery. I then was at the point where I
13:06
thought, I don't want it, but I want it. I can't
13:09
do, I cannot live like this anymore. And then
13:12
how quickly did the surgery happen? Are we talking
13:15
hours, days, weeks? Okay, so I was in hospital.
13:19
They put me straight back on the prednisolone
13:21
because they said that we need to see if we can
13:24
control it. And they were pumping me with just
13:28
so much of that. And that was for about a week
13:31
because they wanted to try and calm the flare
13:34
down. At the time, they said, we'll get a stoma
13:36
nurse to come around to you, a surgeon to come
13:38
around to you. I was just like, I can't believe
13:41
all this is happening because I felt like it
13:43
was at my control. But what's really ironic is
13:46
that previously when I've had flares, I was so
13:50
poorly that at that moment I thought, you know
13:52
what, if I need a bag, I'll have it. I have it.
13:54
I just can't deal with this anymore. So when
13:56
I was there, they had made me record. And I always
13:59
remember they'd said to me, can you record every
14:02
single time you go to the toilet? Being in the
14:06
first three days, I remember I looked and it
14:09
was like 88 times within three days. And it was
14:12
just, at that point, I was so weak. So I think
14:17
I was in for about two weeks before they then
14:21
said, right, okay, it's tomorrow. And yeah, so
14:25
then it happened. You, in one of your Instagram
14:30
posts, and if... I'm not mistaken, it might have
14:34
been in your very first one where you sort of
14:35
introduce yourself and your journey. You wrote,
14:39
and I quote, you found it difficult to even look
14:43
at your stoma at the very beginning, right? Yeah.
14:46
So obviously post -surgery, it's not just waking
14:50
up with a stoma, you know, your entire life is
14:53
going to change. How did you overcome this feeling
14:59
of not even, be able to look at it it was hard
15:04
because I had my surgery and I remember I was
15:08
thinking I've got to wait for my husband to come
15:10
because I didn't want to look down at all and
15:13
then um and I'd actually had one of the things
15:15
I used to do and I used to really burn myself
15:18
with a hot water bottle on my right hand side
15:20
so I had really bad scarring so I had that on
15:23
one side and then when I looked down and then
15:26
I saw it and it was like they didn't tell me
15:28
that when I would have a stoma bag that it would
15:31
be um see -through so I didn't and and like the
15:34
size of it they didn't I didn't know they were
15:37
going to do like six insertions in my stomach
15:39
it was just awful I was like I felt just disgusted
15:43
I felt just awful and thought how am I gonna
15:47
live with this it was awful but I then um was
15:52
all in all I think I was in hospital for about
15:54
six weeks because my surgery was okay but I had
15:57
a lot of infections and I was in um there was
16:02
at a point where I didn't know if I was going
16:03
to make it because it just I came home had and
16:08
it was that I was being really sick long story
16:11
short my stomach was dilating from my my from
16:15
my stomach stopped working sorry and it's I was
16:17
dilating from my stomach to my pelvis and it
16:20
was really touch and go so I was in hospital
16:23
very really dark place I came out again it was
16:28
I just thought I don't know how I'm supposed
16:30
to ever I was taking everything very literally
16:33
as in I was reading what you should wear, what
16:36
you should eat. And I didn't know your whole
16:39
diet changed. There's so much stuff that you
16:42
can't do. So, yeah, it took me a very long time.
16:46
I would say a good two months for me because
16:49
I was in a very, very dark place. Do you feel
16:52
like it's just one of those things where. Time
16:56
changes everything. Time basically pushes you
17:00
to accept your stoma, to accept, you know, who
17:04
you are now. Or how would you describe this transformation
17:08
from really hating this stoma to really accept
17:14
it as part of yourself, right? And then sort
17:18
of restart your life. Yeah. What do you think
17:21
sort of changed? Yeah. remember my um i was like
17:28
sort of housebound for about 12 weeks um my husband's
17:31
friend came around and he was said to me my mum's
17:34
got two bags actually one for bowel one for bladder
17:36
and i don't know why at that moment I just thought,
17:40
oh, my God, what I've got to sort myself out.
17:43
I need to stop feeling sorry for myself. People
17:45
have it so much worse. And then because the first
17:48
thing they always say is you need to name your
17:50
stoma as it's part of an acceptance. So I got
17:54
a name. I called it Cherry because it looks like
17:56
a cherry. And from there, I then reached out
18:01
to a company called Colostomy UK, my stoma nurse.
18:05
had said to me so i said to i'm struggling i
18:07
don't know anyone else i just i feel so alone
18:10
i was looking at things on social media which
18:13
were quite negative and it was putting me more
18:15
in a dark place and then customer uk said reach
18:19
out to there is some support groups so i did
18:21
go to one which is about 20 miles away and when
18:25
i was there I just thought, oh my God, you know,
18:28
this is like midweek. What about people that
18:30
are younger? What about people that want to have
18:34
this support, but nothing's nearer me? So that
18:38
was when I was like, do you know what? This stoma
18:41
has saved my life. It gave me back my life. And
18:46
that was when I was like, right, I'm going to
18:48
set up a support group because I needed it. And
18:51
yeah, so now... A year on and my stoma group
18:55
is going so strong. And it's amazing. And this
18:59
stoma group, we're definitely going to come back
19:01
to that. I want to ask you more about this. Now,
19:04
some time passed since your surgery. You've sought
19:09
some help. You're working on accepting it, sort
19:14
of reclaiming your life as well. What is life
19:19
like with a stoma for you today? amazing I never
19:24
thought I would say um yeah I feel like I am
19:29
I wish I'd had this years ago because it's just
19:33
now to um now I've navigated and I know how to
19:37
sort of work my way around the stoma it's so
19:40
nice to not have constant pain in my side to
19:43
not bleed to to to just have my life back I remember
19:49
the nurse said to me in hospital this is going
19:51
to be such a better quality of life for you and
19:53
I remember thinking are you joking how how is
19:57
this a better quality of life but now it honestly
20:00
honestly it is it's really really is how it's
20:05
just made my life so much better And that's exactly
20:08
what you want from this. That's the ultimate
20:11
goal. And even though we always say like, you
20:13
know, surgery is great, but it does not necessarily
20:15
count as a, you know, full -blown cure. Because,
20:19
you know, even living with a stoma, there's some
20:21
challenges that are attached to it. Tell me about
20:24
your struggles that you still kind of face maybe
20:27
day -to -day living with a stoma. You do still
20:31
have to, you have to make sure you chew your
20:34
food much more. There's certain things you can't
20:36
eat. You can't, even I used to sleep on my right
20:40
hand side. I had to learn to sleep on my left.
20:43
You go out and you think, oh God, what if I leak?
20:47
What if just, it's just that awful thinking,
20:51
oh my God, what if somebody can see it? But now
20:54
I'm just really trying to embrace it. and make
20:59
it my best friend because and it is what it is
21:02
if I do leak I think you know it is but it is
21:05
it is hard because as well with clothing you
21:08
have to be careful sort of with clothes because
21:10
certain things you but I'm really trying to navigate
21:13
that and to see and reach out to companies as
21:16
well to see what sort of is on offer out there
21:20
for people but I wear a hernia belt all the time
21:23
which they it's basically like a hernia support
21:26
belt so that really helps as well because and
21:29
one thing which they didn't tell me in hospital
21:31
was that you are more prone 80 80 percent more
21:34
prone to have a hernia even down to like I had
21:37
a chest infection when I was in the hospital
21:39
and it wasn't until my husband said, shouldn't
21:43
you put your hand over your stoma in case? And
21:46
it was. And that's when they said that's one
21:47
of the worst things for coughing, sneezing. So
21:49
it's just little things like that. Always making
21:52
sure I've always got electrolytes with me. I've
21:57
always got to make sure I've always got like
21:59
snacks because you've got to eat little and often.
22:02
So it's just, yeah, it's definitely. a different
22:06
way i've had to sort of navigate there's been
22:09
a question that's been that i've been dying to
22:11
ask and i'm going to have to open a parenthesis
22:13
for this but i want to make sure i want to ask
22:16
it now instead of forgetting so you have a brother
22:20
with ulcerative colitis you have ulcerative colitis
22:21
obviously your ibd journeys have been quite different
22:25
has there ever been a moment and i'm asking this
22:29
because you know you said that your brother managed
22:32
his disease better than you did. Has there ever
22:36
been a moment where you were angry at your brother,
22:40
where you felt like it was unfair, where maybe
22:43
you had felt envy towards your brother for being
22:50
better off with his colitis as opposed to you
22:53
having to go through this trauma of surgery as
22:56
well? I think back in the day, I was very like,
23:00
God, why can't I have it so minor like him? Like
23:03
he does still suffer now, but he is on different
23:06
types of medication and he sometimes is bleeding
23:09
and he's not. And then, but I've never, ever,
23:12
I've just feel myself that I'm very lucky now
23:14
to have had a stoma. So no, I would never, ever,
23:17
I've never looked at it like that. I've only
23:19
ever looked at it thinking I wish I had it as
23:21
minor as he had it at the time. But never any
23:24
resentment basically, just because. Yeah. Great.
23:29
Yeah. Thank you for sharing that. And that sort
23:31
of closes my parenthesis then. So looking back
23:36
now at your life with a stoma, especially because,
23:40
you know, we can agree that this was sort of
23:42
a traumatic experience for you at the beginning
23:44
and you sort of accepted it. You live with it
23:46
now. What do you wish you had known from day
23:52
one of living with a stoma? My God, I just wish
23:58
I knew that there was support there. I wish I
24:00
knew that there was somebody to talk to, that
24:02
it was going to be OK, that it's not nothing
24:04
disgusting. I wish that I just had somebody to
24:09
talk to. It's just it's yeah, I just really do.
24:14
And that's why it was so important for me to
24:16
set up this support group, because I felt so
24:19
alone. so so alone you know and it's so nice
24:22
to be able to talk to people that are on this
24:25
and it's like questions that you wouldn't be
24:27
able to ask your friends and family because they
24:30
don't really understand but you know like no
24:32
questions off limits and it's just really nice
24:35
to have that but yeah at the very beginning i
24:38
just wish i had someone there just to help me
24:41
and to say it's gonna be okay so let's talk a
24:44
bit a little bit about your support group If
24:46
I'm not mistaken, you sort of came up with the
24:49
idea after you actually visited an existing one,
24:52
right? That was just maybe a little bit too far
24:54
away from where you live. Tell me how this works.
24:58
Is this all in person? Is this virtual? Is it
25:00
hybrid? You know, how many people are in that
25:03
group? And what sort of topics do you discuss?
25:06
You know, just take us through that. And I want
25:09
to ask this question because most people today,
25:10
they sort of just... jump in to social media
25:13
for help. And that's fantastic, right? The communities
25:17
are exploding and there's real compassion, real
25:19
support online. But I think there's still sometimes
25:22
a difference between, you know, sitting on a
25:24
computer or messaging through a phone and literally
25:27
sitting across from somebody else. So explain
25:30
to us your support group and how you run it.
25:33
Yeah, so I went to that support group. Everybody
25:36
was... I don't want to say this without being
25:39
rude, but everybody was probably 70 and above.
25:42
I felt like, God, I wish I had somebody sort
25:44
of my age to talk to. Like I said, it was on
25:50
a Tuesday. So I thought it's really hard to keep
25:52
getting time off work to go. And it was like
25:54
20 miles away. I just thought, my God, wonder
25:58
what it would be like to just set up a group.
26:00
And I thought, I've got absolutely no idea. So
26:03
I contacted Colostomy UK and said, you know,
26:06
I was thinking about this. And they said, we'll
26:09
put you in touch with somebody that has run a
26:11
group before. So she rang me and said, we've
26:13
been doing it for so many years. I run it in
26:15
a village hall. So then what I did was I put
26:19
it out on social media. and just said, I had
26:22
to think of a name, and I just randomly come
26:25
up with Stomach Love, and just put it out there
26:29
to say, meet in this pub, and I'm going to be
26:33
there for like two hours, if you have a stoma,
26:35
or you want to just come along to chat, anyway,
26:37
I had like 11 people turn up, which I, and then
26:41
I'd said to them, I'm just going to talk about
26:44
my journey. We'll go around in a circle if you
26:47
want to share or if you don't want to share.
26:49
And people were going around saying everything.
26:51
And then from then I looked into actually a hall
26:56
that I hire now every six Saturday. So it's in
27:00
person. Anybody is welcome. Just if they don't
27:03
have a stoma, if they have a stoma, if a family
27:06
member wants to come along. So I'd say now I've
27:09
got about 35 members. And what I do is they come
27:12
along, we all sit around and I get speakers in
27:16
as well to talk about all different bags or we'll
27:19
talk about any conversations. I'll put an agenda
27:21
together and I will ask them what do they wish
27:24
to discuss. But the conversations really sort
27:26
of start flowing. You might get some people that
27:29
are not confident speaking out. So at the end,
27:32
what we do is I'll do like a little raffle and
27:35
I make sure we have good biscuits and tea and
27:37
coffee. And then we sort of can go around. speak
27:40
to each other one -on -one then if we want to
27:43
and um so yeah it's going really well and i've
27:45
had really good feedback from there so and it
27:48
just shows that there was obviously support that
27:50
was needed exactly you you're literally almost
27:53
taking the words out of her mouth i was just
27:55
going to say you know you said in your first
27:56
sort of meeting you know 11 people showed up
27:59
and i'm not familiar with the population of the
28:02
town that you're living in but it just kind of
28:04
also goes to show that a lot more people that
28:07
you might think are touched by IBD, right? That's
28:13
really inspiring. I mean, you're inspiring me
28:16
right now to basically try and set up the same
28:18
thing in my town here. So it's really, really
28:20
great. And I really do hope that everybody's
28:21
listening, you know, if they don't have a support
28:24
group yet and are open to talk about it, to actually
28:26
maybe, you know, seek. these kinds of initiatives
28:29
or launch them by themselves. Because again,
28:33
online support is really fantastic. And I think
28:35
a lot of people find a lot of answers, you know,
28:39
two questions online, but there's just something
28:42
about being in the same room and looking at a
28:44
person in the eye, you know, and just knowing
28:46
that, you know, that person understands completely
28:48
how I feel, what I'm going through. There's no
28:53
replacement for that. So that's really fantastic.
28:56
Really fantastic. So support groups, that's great.
29:00
It helps others. It also helps you. So I think
29:03
it's probably also like self -therapy for you.
29:05
So let's shift sort of like into sort of what
29:09
I call the third act, which is sort of present,
29:12
future, but also a little bit more sort of introspection
29:14
here. Looking back at your entire IBD journey,
29:18
even before surgery and now after, how do you
29:24
think that colitis and Living with a stoma has
29:28
changed you as a person. I think now it's changed
29:32
me for the better because I felt I'm quite a
29:35
confident person. But for years, I just felt
29:38
like I was just losing myself and thinking that
29:41
I honestly thought, I don't know how I can deal
29:44
with this pain and I cannot deal with having
29:46
this. There were certain points where I was so
29:50
dark that I just thought, I don't want to be
29:52
here. It was just thinking, how can I? just manage
29:57
this pain how can I just ever feel normal and
30:01
I think where now I've since having my stoma
30:04
and noticing the change in my body that I've
30:07
now there's so many things now that I'm doing
30:10
and it's amazing I have this like newfound energy
30:13
as well because I feel like I haven't had energy
30:16
for 14 years and it's also as well one thing
30:19
that I will say is that I have actually got to
30:22
have more surgery as my colitis is still in me
30:29
basically my rectum my rectal stump that I've
30:33
got they've less say 10 centimeters I had a camera
30:36
in January and they told me that it's still very
30:38
ulcerated and I'm due to see my surgeon in three
30:42
weeks and that's something that I'm not really
30:45
looking forward to but I know it will be something
30:48
that has to happen and I've got my group there
30:51
um so you know and again I'm just very lucky
30:55
so I look at my stoma now as in this was meant
31:00
to be it was just it had to be because and like
31:03
I said I've really opened my eyes up to appreciating
31:06
life as well I know it sounds so cliche like
31:09
we all say oh life's so short but when I was
31:12
in hospital and I told myself if I if I made
31:16
it out of here that I would learn to roller skate
31:20
and I've joined a roller skate in Derby and I've
31:25
gone back to yoga and I've gone back horse riding
31:27
and it's all these things so in my mind it's
31:29
like oh my god I should have done all this before
31:31
but it's like proving a point to myself now that
31:33
where I feel this newfound energy that it is
31:37
life is too short and the pain that I had pain
31:40
for so many years that now I've just so nice
31:43
to be pain free Well, you said that life is short
31:46
and everybody says and keeps saying that life
31:48
is short. And I got to tell you, we all say that
31:50
because that is a fact, right? And I think it's
31:54
perfectly fine to repeat facts over and over
31:56
again. And I think what you said is really great
32:00
because earlier you mentioned that when you had
32:01
your first surgery, even though you had support,
32:04
you wish you had support from people that would
32:06
probably understand you better. Now that you're
32:08
facing another surgery potentially or most likely.
32:12
Just look at the change, right? You have that
32:14
support now, you know, you after the surgery,
32:17
like, let's say if it happens, you know, you'll
32:19
be able to go back and say, well, this time around,
32:21
I had all the support that I needed. And that's
32:24
a truly great thing. So speaking of support,
32:29
IBD does not impact. us the people who actually
32:34
have and live with the disease but it does impact
32:36
the people around us and you mentioned that you
32:39
know you have a husband you were married as you
32:40
went through this so how did colitis affect your
32:44
your close relationships you know husband close
32:48
family members i think that um i was very good
32:52
at putting like my clown face on and just because
32:54
i thought i'm sick of hearing myself saying i'm
32:57
tired i don't feel well and just not having the
33:00
energy but i think I would then get to a point
33:03
where I'd be like, I actually can't have no energy
33:05
to do anything. And I've got two children and
33:08
my husband at home with me and they have just
33:11
been amazing. And, you know, I do have really
33:13
good friends and family that I could talk to.
33:17
But when I'm poorly, like when I'm in hospital,
33:20
I take myself away because I don't want people
33:22
to see me like that. So that's why I will then
33:25
just sort of go within myself, even though I
33:27
know they're there and that I can talk to. but
33:31
yeah it's just been it's very important to speak
33:35
to speak out but um yeah i think for years now
33:39
when i think about how my children and my husband
33:41
and i've seen that and i know they really suffered
33:43
seeing me um when it was very touch and go me
33:46
being in hospital and now they see a different
33:48
side to me now and how they like oh my god you're
33:51
just so different yeah i know that's that's a
33:55
really positive development and um Speaking of
34:00
speaking out, you as someone who faced surgery
34:06
and absolutely did not want that to happen, what
34:10
would your words of advice be to people who find
34:14
themselves in that same situation, right? Like
34:16
who are unable to get their colitis under control
34:20
and who might be facing surgery pretty soon?
34:28
What would you tell those people? That it's okay.
34:31
It sounds so scary. It's so daunting. Just really
34:35
research, look into it, reach out to people.
34:39
If there is anyone that they know, but sometimes
34:44
don't go on. These forums sometimes can be quite
34:48
negative. know that there is help out there I
34:53
felt like at the beginning I didn't know I did
34:56
not know about stomas I didn't know what they
34:58
were and now I feel like it's everywhere and
35:02
I'm really glad that it's everywhere I don't
35:04
know if it's everywhere because now I have one
35:05
and um I'm seeing it everywhere but like I would
35:10
talk about stomas and colitis all day long because
35:13
I feel like I want people to know that There
35:16
is help there. But that's the one thing I did.
35:19
I wish I, because I remember they gave me a leaflet
35:21
and it would say, you've got to wear this certain
35:23
clothes and you've got to eat this. And so I
35:26
was very literal to the book. And it only took
35:29
me, actually, with my group, I wouldn't eat lettuce
35:32
for, oh God, nearly a good eight months because
35:36
I read once I would get a blockage. Anyway, I've
35:39
ate lettuce. It's absolutely fine. But it was
35:42
these things that I was reading. So that's why
35:44
I would say don't take anything literal. Just
35:47
reach out to, even though you see these things,
35:50
reach out to people on social media and, you
35:52
know, just ask them as well and say, you know,
35:55
can I, I have had some people ask me, I'm going
35:57
to have surgery. Any tips? And, you know, I would
36:01
just say, just also be kind to yourself because
36:03
there's a reason and it's saving you. and yes
36:07
i didn't want it but i have got it now and you
36:11
know i have it and you've got to accept it and
36:13
we all adapt to change because we have to absolutely
36:18
absolutely so that's what you would say to others
36:21
but if you could go back to the day that you
36:25
were diagnosed and speak to yourself what what
36:30
would you say to to yourself i would say it's
36:34
okay It's going to be tough, but you will get
36:38
there. It will be hard, but you've got to find
36:42
that inner strength. And no, I always feel that
36:45
people with Crohn's and colitis, they find this
36:48
inner strength somehow and they get through their
36:50
flare -ups, get through the day just by getting
36:52
up and getting washed and just seeing people.
36:56
That's hard. So I would just say it's going to
37:00
be okay. With everything that you've seen, with
37:03
everything that you've experienced in regards
37:06
to IBD, colitis, Crohn's, do you think that we
37:11
will see a cure to this in our lifetime? I really
37:16
don't know. I would absolutely love there to
37:18
be. I really, really would. That's why I try
37:21
to work along with Crohn's and Colitis UK. And
37:28
I'm about to be actually a volunteer for Colostomy
37:32
UK so I can go out to events and things and talk
37:35
about things because I would love there to be
37:38
a cure. But then if the only cure would be that
37:42
you would need a bag, then I would say that that's
37:46
the only cure and it would be the best cure.
37:49
But surely one day, I just hope there will be
37:51
one day. No, and I think we all do. And I think
37:55
while we wait for that, no matter how long it
37:57
takes, I think we need to continue to educate.
37:59
We need to continue to raise awareness. We need
38:02
to continue to advocate for everybody living
38:05
with IBD and helping each other out. So I think
38:07
you are certainly one of these people who are
38:09
doing all of these things and you're doing them
38:11
the right way. And I can only urge you to continue
38:15
to do that because whether you're touching one
38:18
person or two or three or 11, you know, the turnout
38:23
of your very first meeting, it's making a difference.
38:26
It really, really is. So I want to thank you
38:29
for doing that, number one. And I also want to
38:30
thank you for taking the time to speak to me
38:32
today about your journey. It's very, very inspiring.
38:35
Certainly gave me a lot of food for thought as
38:37
well. So what I wish for you is... you know,
38:41
continuing success with your support group, but
38:43
also all the best in your still continuing IBG
38:46
journey as well. So thank you so much, Jess.
38:49
Thank you so much. And thank you so much for
38:50
taking the time to talk to me. I really appreciate
38:52
it. Me too. Thank you. That's it for today's
38:57
episode of Colitis Unfiltered. I'm Frank Tabering.
39:00
And if this hit home or hit your gut, do us a
39:03
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39:12
for more inspiring stories from the bathroom
39:15
floor.