Latest / Crohn's & Colitis Unfiltered / Crohn’s, motherhood and advocacy: Harriet’s fight to reclaim her life

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Crohn’s, motherhood and advocacy: Harriet’s fight to reclaim her life · Crohn's & Colitis Unfiltered

0:01
It will not hold your life back, if anything
0:04
it will give you your life back. It hasn't affected
0:07
my relationships as well because I know a lot
0:09
of people get worried about if they've got a
0:10
partner or if they're looking for a partner that
0:13
it will affect them in that way. I've been quite
0:15
lucky because my husband's been with me since
0:17
I got diagnosed with Crohn's so he's been through
0:19
the whole journey and he always says to me it
0:21
doesn't change who you are, you just go to the
0:24
toilet differently, that's it. This is Harriet.
0:28
who got diagnosed with Crohn's disease at age
0:30
22 in Staffordshire, the UK. Harriet was already
0:35
familiar with inflammatory bowel disease when
0:37
she was diagnosed, because her own father has
0:39
been living with Crohn's disease for a long time.
0:42
But that didn't make her own journey that much
0:44
easier. Harriet had to navigate motherhood when
0:48
she was at her worst. But thanks to great family
0:50
support, she came out on top. Today, on Colitis
0:55
Unfiltered, she'll tell us all about her journey.
0:58
My name is Frank Tabering and Harriet, welcome
1:01
to the show. Hi. So Harriet, Crohn's disease,
1:05
diagnosis of 22. What were your first symptoms?
1:09
What happened to your body that prompted you
1:12
to seek some medical guidance? Tell us how it
1:17
all began for you. Yeah, so in my teenage years,
1:20
I was diagnosed with IBS. So I thought I had
1:24
IBS. for years. And then I started getting blood
1:27
in my poo, like a lot of blood. And my dad has
1:31
Crohn's disease. So my dad was a bit like, Harriet,
1:35
I think this is more than IBS. I think you need
1:37
to go and get checked out by the doctor. And
1:39
I was a bit like, oh, I'm not sure. And I went
1:42
to the doctor and they did a stool sample and
1:44
it came back with a raised calprotectin. They
1:47
sent me for a colonoscopy. I had the colonoscopy
1:50
done and it was actually originally diagnosed
1:53
with IBDU, so IBD unclassified. They couldn't
1:56
tell the difference if it was Crohn's or colitis.
1:59
So it was a bit like that for a few years. Tried
2:02
loads of different medications and everything.
2:04
And then I had a stoma bag done in 2023 because
2:09
my colon was like, it was really bad. I couldn't
2:12
hold my stools in. I was like myself. It was
2:15
really embarrassing. And when I had the stoma
2:18
done, They did the pathology on my colon and
2:22
they said, actually, you have definitely got
2:25
Crohn's disease. My consultant actually said,
2:28
I think you have Crohn's disease because of the
2:29
nature of it. But the biopsies were very strange.
2:32
Apparently, it was quite complex. But because
2:34
after my stoma, it came back in my small intestine,
2:37
which I'd never had it there before. They were
2:39
just like, you definitely got Crohn's disease.
2:41
So it was all a bit up and down for a while.
2:44
But yeah, it wasn't the best journey, to be honest.
2:47
Navigating an IBD diagnosis, there's the physical
2:51
part, but there's obviously also the mental aspect
2:53
of it. And most people typically are not fully
2:57
aware of what Crohn's is, what colitis is, right?
2:59
It's their first contact with IBD when they get
3:01
diagnosed. You have a dad who has Crohn's. In
3:05
what way do you think has this made it easier
3:08
for you to process the IBD diagnosis? and to
3:13
start navigating the disease post -diagnosis?
3:17
I wouldn't say it was easy to begin with. Like
3:20
when my dad was saying, I think you might have
3:22
got something more than IBS. I was a bit in denial
3:25
because I'd seen what my dad had gone through.
3:27
My dad had gone through like resections. He hasn't
3:30
got a stoma bag, but he went through resections
3:32
and things like that and different medications.
3:34
He was quite a... big man and then he went really
3:37
like underweight and I just thought to myself
3:40
oh no I hope this isn't what's in store for me
3:42
and my dad was very reassuring he was very supportive
3:46
and he still is now he still is now he's been
3:50
really great with it and I wouldn't say I've
3:53
had it worse than him because he's gone through
3:55
a lot as well but he always says to me you've
3:57
had it a hundred times worse having to have the
3:59
bag and everything but he's been a great support
4:02
but I will say like when I was first diagnosed
4:05
I had a lot of anxiety around it because I thought
4:06
I was going to be just like him but yeah he's
4:09
been a great support. How did you deal with that
4:12
anxiety? I mean your dad was there obviously
4:14
helping you out but one person might not be enough
4:19
for you to be I'd say become comfortable right
4:23
with this diagnosis and stuff how did you deal
4:26
with this fear with this unknown about your own
4:29
IBD journey? I found it really hard I found it
4:33
really hard to start with it really affected
4:35
my mental health so I actually went to therapy
4:38
so I went to the doctor explained like how I
4:41
was feeling with it and my mental health was
4:43
really bad. And they suggested therapy to me
4:46
and I hadn't really done it before. And I was
4:47
a bit like, hmm. So I went ahead with it. They
4:50
did put me on some antidepressants as well because
4:53
I was really that bad mentally. I'm not as bad
4:57
now as I was, even though I've gone through a
4:59
lot. But the initial anxiety to start with was
5:02
horrendous. It was really bad. And so before
5:05
you had your surgery. Did you go through any
5:08
treatments? How long did you go through these
5:13
treatments? Did they stop working? Because I'm
5:16
curious to see what eventually really led to
5:18
your medical team saying, hey, we actually, you
5:21
need to have surgery and that's the only option
5:23
for you. Yeah, so basically I started on like
5:26
the mesalazine, the pentazer, which is like a
5:29
really mild drug to start with. And that was
5:32
working for a little bit. And then they wanted
5:34
me to try azithropine. And I had a really bad
5:37
allergic reaction to that, like really bad. So
5:41
they were like, right, we'll stop that. And then
5:43
they moved me on to biologics. So I went on Humira.
5:46
I think it's called Adalimumab. I'm not quite
5:48
sure if I pronounced that properly. But I was
5:50
on that for a year and it worked really well.
5:53
And then it just stopped working. I developed
5:55
antibodies. So they tried me with Infliximab,
5:59
which I know is a really popular one for IBD.
6:01
And it just didn't work for me. I had really
6:03
high expectations. And it didn't work. So they
6:06
tried it over like about six months and nothing
6:09
happened with it. So they're a bit like, right,
6:11
we'll take you off that one. And then I tried
6:14
Stelera Eustachinumab and I was on that for five
6:17
years. It was brilliant. It was absolutely brilliant.
6:20
It did give me a little bit of a headache after
6:22
injection, but it was the best biologic I'd ever
6:26
taken. And when I was actually pregnant with
6:30
my second child, when I told the hospital that
6:33
I was pregnant, They took me off the medication
6:36
straight away, which was a bit of a mistake on
6:39
their behalf. And I was a bit angry actually
6:41
at the time because another local hospital, I
6:44
knew somebody who was pregnant who was in my
6:46
area that was under the local hospital and she
6:49
was allowed to stay on her Stelara. So I was
6:52
a bit like, why have I got to be taken off it?
6:54
And they did say like the risks to the baby,
6:56
et cetera, et cetera. And I was like, okay, I
6:57
understand. And they said, we'll just treat you
7:00
with steroids. So I've had a lot of causes of
7:02
pregnancy alone in my time with having Crohn's.
7:05
And they said, we'll just treat you with steroids
7:07
if you get really bad. Lo and behold, I got into
7:10
my third trimester with my son and I got really,
7:14
really ill. And they put me on the prednisolone.
7:17
I still wasn't 100 % and I developed gestational
7:20
diabetes off the prednisolone. And then when
7:25
I had my son, I was okay for a little bit, for
7:29
a couple of months, and then I wasn't. I just
7:30
went really downhill. They tried me back on the
7:33
Stelera. It didn't work. It didn't work. So I
7:36
don't know if I developed antibodies. That's
7:37
what they said. They think I developed antibodies
7:39
to it. And it just got that bad. I couldn't control
7:42
my bowels. We couldn't go out for a day out.
7:45
It was really depressing, to be fair, because
7:47
I was just trying to go out with my young family.
7:49
And I was just stuck on the toilets the whole
7:51
time we went out. And it got to the point where
7:54
me and my consultant, we had a chat and he was
7:57
like. I really do think you need to have a stoma
7:59
now. You need your large bowel removed because
8:01
your last scope that you just had is really bad.
8:04
So I was booked in for it in the April in 2023.
8:08
And then I actually had to have it as an emergency
8:10
in the March because I was that unwell. I presented
8:14
to A &E and they were just like, we need to do
8:18
the surgery now because you're developing toxic
8:20
megacolon. So, yeah. That's how it all came about.
8:24
But now I'm on Sky Ritzy. So I've been like three
8:27
years with the stoma bag and I've been on Sky
8:30
Ritzy for a year because my Crohn's come back
8:33
in my small bowel after my surgery. But the Sky
8:35
Ritzy has been brilliant. I've got no side effects.
8:38
My Crohn's has gone away and I'm in remission.
8:41
So it's good. That's perfect. You already answered
8:44
my question, how are you feeling now? We're going
8:46
to come back to that in a second. We're also
8:48
going to talk about motherhood because I think
8:49
motherhood and IBD, this is a fascinating topic
8:51
in itself. But before we get there, I would like
8:54
for you to tell me, so you talked about anxiety
8:57
before and how you sort of dealt with that leading
8:59
up to the surgery. But now waking up from surgery,
9:02
your life has changed. Your body has changed.
9:05
You have a stoma now. What went through your
9:08
mind when you first saw the stoma? And how did
9:12
you process that mentally, you know, at least
9:14
the first couple of days after the surgery? I'm
9:16
not going to lie, it was awful. It was awful.
9:19
It was weird because I was 50 -50. I was 50 %
9:23
this is dreadful and then I was 50 % this is
9:26
time to get my life back. And when they actually
9:29
came around and showed me how to do my first
9:32
stoma change, they took the stoma bag off and
9:36
I nearly fainted at the sight of it. Now, I've
9:40
seen stomas before. Don't get me wrong. I've
9:42
seen them before with my job and things. But
9:44
to have it on my body and it was so swollen because
9:48
it had just been so newly done, it really shocked
9:52
me. And the one thing that shocked me the most
9:54
was the smell from it. So I don't mean as in
9:56
like a poo smell. It was like a flesh smell.
10:00
And the nurse was like, yeah, because it's a
10:01
brand new stoma, it's going to smell a little
10:04
bit. And I was so taken aback. I was so... I
10:09
was very anxious to even touch it. But over the
10:11
next few coming days, I actually got used to
10:15
it. I was emptying my own stoma bag on day two.
10:18
I was changing my own stoma bag on day two. It
10:20
was just getting over that first initial bit
10:23
of shock, to be honest. But I was okay. I was
10:26
discharged on day five. And they said I'd done
10:29
really well considering. So yeah, it was a bit
10:32
nerve wracking. Of course. Yeah, absolutely.
10:34
Now, you said that currently you feel great.
10:38
Most of the people that I talk to who had surgery,
10:41
of course, tell me that, listen, my IBD journey
10:43
actually is not over necessarily. I'm not really
10:45
cured because, of course, living with a stoma,
10:48
it's, you know, it has its own challenges. For
10:51
you, what is life like now with your stoma? You
10:55
mentioned already, you know, you're feeling well
10:57
with your Crohn's. What are your challenges that
10:59
you still encounter living with a stoma today?
11:02
It's the things like leaks. Now, I don't suffer
11:05
really bad with leaks with my stoma bag, but
11:07
it still always is a worry because I like to
11:09
go walking and hiking. I do do quite a lot of
11:11
sport as well, especially running. And before
11:14
I go out, I have to make sure that that stoma
11:17
bag is glued right down. And I always have a
11:20
spare change of my stoma bags in my car as well,
11:23
just in case anything happens. I do still have
11:26
that anxiety that my bag's going to leak. that's
11:30
the worst thing for me. But other than that,
11:33
it's been great, to be honest. It's just the
11:36
leaking. And if I'm at work, I have to take,
11:38
in my locker, I've got a spare change just in
11:41
case. And that's the biggest thing for me. And
11:44
just health -wise, otherwise, how are you feeling?
11:47
Because, you know, you also have gastroparesis,
11:49
I think. How is that sort of impacting your overall
11:54
health now? Not very good, to be honest. When
11:57
people see this feeding tube, they automatically
11:59
think it's for IBD. And I always have to say
12:02
it's not. This is for gastroparesis. My IBD is
12:05
absolutely fine. But this gastroparesis developed
12:08
after I had my stoma surgery. So the stoma surgery
12:12
was still the best thing I ever had done in my
12:14
life. I didn't realize there could be some complications
12:17
afterwards. So they think I've got potential
12:19
nerve damage from the operation. That's why my
12:22
stomach's going very slow and I'm in so much
12:24
pain with it. So yeah, it's not the best. I'm
12:28
not going to lie. They are putting me forward
12:29
for a PEG -J tube, but I would still have the
12:32
stoma surgery. Again, I'd still have it. But
12:37
overall, as far as your ABD concerned, you just
12:39
mentioned it, you know, you give you your quality
12:41
of life back and you wouldn't change a thing.
12:44
A lot of people who are facing that same, let's
12:48
say, outcome or who see surgery potentially as
12:52
the only other option, one thing that sort of
12:56
comes up is fear, obviously, that their life
13:00
may just be ruined, that this appearance of dystoma
13:05
is going to prevent them from doing so many things.
13:08
As somebody who lives with one, as somebody who's
13:11
accepted it, as somebody who's doing much better
13:13
because of it, what's your message to those people
13:16
who are potentially facing or are sure to be
13:18
facing surgery and just cannot get on board with
13:22
this idea of living with a body that changes
13:25
so much, who are really that afraid? What would
13:26
you tell them? It will not hold your life back.
13:29
If anything, it will give you life back. Like
13:32
I say, I do a lot of sport. I do running. I do
13:35
swimming. It hasn't affected my relationships
13:38
as well, because I know a lot of people get worried
13:40
about if they've got a partner or if they're
13:41
looking for a partner, that it will affect them
13:44
in that way. I've been quite lucky because my
13:46
husband's been with me since I got diagnosed
13:48
with Crohn's, so he's been through the whole
13:49
journey. And he always says to me, it doesn't
13:51
change who you are. You just go to the toilet
13:54
differently. That's it. It doesn't change who
13:58
you are. And I used to be that person. They did
14:00
put me forward for a stoma in 2019. And I said,
14:03
no, I said, absolutely not. I'm not pooing into
14:06
a bag. I'm not doing any of that. I was really
14:08
scared about it. And I thought about my body
14:11
image as well. And I was just like, no. And then
14:13
in the end, I was like, give it me. I can't live
14:14
like this anymore. And I wish I'd have done it
14:16
sooner. I wish I'd have done it sooner. It's
14:19
given me my life back. In what way did you, did
14:24
your perception of your own body change? Because
14:27
body image is a huge thing, right? Like you have
14:30
your body, you're already struggling with it
14:32
physically when you have active IBD, but then
14:34
you have surgery and it's sort of your entire
14:36
body image changes. How was that for you? It
14:40
was hard at first. I think as well, not just
14:43
because I'm a woman, I'm very critical of my
14:45
body anyway, especially because I used to take
14:48
a lot of prednisolone. My weight changes. I used
14:50
to be a very big girl. Then I'd lose weight.
14:52
Then I'd gain it all again. And then having a
14:55
stoma bag on top of it, I used to think they
14:57
were really gross. I'd be like, oh, God, carrying
14:59
in a bag. You've got some of your intestine hanging
15:01
out your body. How gross. And to start with,
15:05
it took a while to accept it with my body image.
15:07
But now it's just another part of me. It's just
15:10
a little bag I've got on me. Like, I know the
15:13
stoma itself isn't attractive. It's not going
15:15
to be because it's a bit of intestine hanging
15:17
out of your body. But I always look at it now
15:19
and I just think, you saved my life. And I don't
15:23
think, oh, this is some disgusting thing. The
15:25
only problem I do have sometimes is when I put
15:28
certain clothes on and you can see like the bulge
15:31
of it. That's the only thing I don't like because
15:33
I like to show my stoma bag when I want to show
15:35
it, if you get what I mean. But other than that,
15:38
yeah, it took a while to accept, especially body
15:41
image wise, but I'm all right now. Navigating
15:45
IBD, navigating surgery, that's one challenge.
15:48
Navigating relationships, it can be difficult.
15:49
And I'm very happy to hear that it really worked
15:51
for you. Since your husband was really on your
15:53
side, you had support from your dad as well.
15:56
But being a mother and struggling with IBD, that's
16:00
one thing. Being a mother and struggling with
16:02
IBD and having a surgery, it's another challenge
16:05
on top of it. Talk to me a little bit about...
16:09
what that was like for you to navigate motherhood
16:11
during times when you are struggling with your
16:14
health and also if there's sort of a difference
16:18
between the struggles of dealing with motherhood
16:20
and IBD before surgery and after surgery. Before
16:24
surgery, it was really difficult because I have
16:27
got a daughter as well. She's nine and she was
16:30
just getting used to seeing me ill all the time,
16:33
if you get what I mean. She was very, are you
16:35
okay, mommy? You know, you're not very well today
16:38
and things like that. It was awful. And then
16:41
when I had my surgery, my son was only one years
16:44
old and my husband had to just like take the
16:48
whole slack of it all because I was in and out
16:50
of hospital before the surgery with these flare
16:52
-ups, terrible. And I used to feel really guilty
16:55
and I still do when I have my bad days. I feel
16:58
really guilty for my children because they're
17:01
not getting 100 % of me. If you get what I mean,
17:04
they're not getting the whole of me. And I can
17:08
get a little bit irritable when I'm in a flare
17:10
because you do, don't you? You don't feel very
17:12
well. And I feel like sometimes I snap and then
17:14
I feel really guilty because they're only little.
17:16
But my son's four now and my daughter's nine.
17:19
And it's hard mentally because I feel so guilty
17:23
on them because they're only little and they
17:26
shouldn't have to be seeing that with a parent,
17:28
to be honest. So having support like spousal
17:31
support or support from the extended family is
17:34
really the key difference maker here, you know,
17:37
especially when it comes to raising children.
17:38
And I'm very happy that you had that. So for
17:41
you having a dad with Crohn's, you having Crohn's,
17:45
is that something that has circled your mind
17:48
that, you know, oh, could they potentially get
17:52
IBD2? Is the risk higher? Like, has this come
17:55
to your mind? And how have you dealt with it,
17:58
if so? Yes, it has time and time again. My son
18:02
actually not long ago had a bit of blood in his
18:05
poo because it is full. And I was a bit like,
18:08
oh my God, why is this happening? I completely
18:09
went over the top. I was ringing the doctors
18:12
and my husband was just a bit like, calm down.
18:14
It probably isn't what you've got, just calm
18:17
down. And I was a bit like, well, why is he pooing
18:20
blood? And took him to the doctors and it was
18:22
actually because he'd started at nursery and
18:25
he'd been having like the UHT boxed milk. And
18:28
as soon as we stopped that, he stopped bleeding
18:30
out his bottom. So we think he did have a milk
18:31
allergy when he was a baby as well. So it was
18:34
to do with the milk. And I'd completely overreacted.
18:37
I said to the doctor, I said, well, I've got
18:39
Crohn's disease. I said, my dad's got Crohn's
18:41
disease. I'm really paranoid that this is what's
18:44
happening with him. Can you do some tests? And
18:47
she was a bit like, whoa, calm down. We're going
18:50
to speak through things. Has anything changed?
18:53
And then obviously I said about the milk at school.
18:55
And she said, tell them to stop the milk, see
18:57
if it... helps and as soon as he stopped it he
18:59
stopped doing that but I am I know it sounds
19:01
very strange but I do monitor their bowel movements
19:05
not to sound like some strange person but like
19:09
if my daughter will say like I feel a bit constipated
19:11
or I feel a bit bunged up I'm like the first
19:13
thing I think is oh god I hope this isn't gonna
19:16
I hope this is gonna pass like I get really I
19:18
do get quite worried about it and then I've got
19:21
my husband really trying to reassure me, which
19:24
does help. I try not to get worked up, but sometimes
19:27
I do get a bit worried because of me and my dad.
19:30
But it doesn't always necessarily mean that your
19:32
children are going to get it. I think it's just
19:34
unlucky with me and my dad because my cousin's
19:37
got ulcerative colitis as well and he's got a
19:39
stoma bag. And I think it's just, I think it
19:42
is a little bit in our family, but it doesn't
19:43
always mean that it's going to be passed down,
19:45
if you get what I mean. So there is a bit of
19:48
a worry there. Of course. And then, you know,
19:51
we as IBD warriors here, we already have ourselves
19:53
to be worried about. And we have this fear of
19:56
like, oh, is the next flare coming along? You
19:58
know, how long can we stay in remission? Or what
20:00
else, what other conditions am I going to develop
20:02
because of this disease? Now, if you have kids,
20:04
that just adds an extra layer of stress potentially
20:07
and something extra that we have to manage as
20:10
well. I talked to my GI, I asked her the question,
20:13
hey, listen, I'm the dad, I'm the only one with
20:15
IBD, is there a risk? And at least... Her perspective
20:19
was, honestly, it's not something to worry about.
20:22
If one of the parents has IBD, there's maybe
20:24
a microscopic chance, you know, a percentage
20:27
that goes up. But she says that it's kind of
20:30
still so insignificant that there's really no
20:33
direct link between, you know, dad or mom or
20:36
genetics and stuff. So, you know, we can hopefully
20:39
put our heads to rest as we keep going, you know.
20:45
You've experienced a lot over those last years
20:47
through your IBD journey. And a medical experience
20:53
like that one is not an easy one to process.
20:57
How has Crohn's disease changed you as a person?
21:02
I used to be very quiet. So anybody that knows
21:05
me, I was like, especially at school and in my
21:09
early 20s, I was a very, very quiet person. Some
21:12
people would say I was like a mute. And then
21:15
because I've had to advocate for myself because
21:17
the NHS isn't in a great place at the moment.
21:20
It's overrun. People are underpaid. It's really
21:24
diabolical when you get admitted into hospital.
21:27
And I've had to really advocate for myself. And
21:31
being a very quiet, anxious person, that was
21:33
really difficult for me. But I've got to that
21:35
point where I've done it so many times now. It's
21:39
not changed my personality. Well, I don't want
21:42
to say that it's changed me, but I want to say
21:44
it's changed me for the better. Like I am more
21:46
outgoing now. I am more, I will put my foot down.
21:49
I will advocate for myself and I will get my
21:52
opinion across now. Like, as I said before, I
21:54
was very quiet. I wouldn't say anything. I'd
21:56
sit there with the healthcare professionals and
21:58
just be all like this and I'd just take in everything
22:01
they'd say and I wouldn't say anything. But because
22:04
I've been gaslighted that many times now, I just
22:06
say what I think. And I do think IBD has changed
22:10
me for the better because I still think I'd be
22:12
that same person before if I hadn't experienced
22:15
all this. Yeah, more power to you. I think that's
22:18
great. And we can see it because you're very
22:20
active on social media, specifically on TikTok.
22:22
I mean, that's how I found you. That's how we
22:23
connected. And going through your feed, like
22:28
you said, you're very outspoken. You're definitely
22:30
not shy anymore. You're definitely not timid,
22:32
right? You don't have an issue calling people
22:34
out when you are facing ignorance, especially
22:37
when it comes to IBD or questions that are not
22:39
necessarily, let's say, of the smartest kind,
22:42
right? Which is great, by the way. I love that
22:44
because that's a really fresh take. How did it
22:47
come to you really engaging yourself and taking
22:50
the time to build your own platform on social
22:52
media and, first of all, share your own story,
22:55
but then also sort of fight against stigma or
22:58
misconceptions? Where did that come from? So
23:02
I just started my TikTok because I wanted some
23:04
support because of what I was going through.
23:06
I just not long had my surgery done. Then I was
23:08
experiencing all these gastroparesis symptoms.
23:11
So I thought, I'm going to do some videos, see
23:13
if anyone will help me, see if it'll hit off.
23:16
And I was really surprised how well it's gone
23:19
over the last couple of years. And then I'd get
23:21
some of these silly comments. And the ignorance
23:25
from people when it comes to IBD is astounding.
23:29
And I just used to get so annoyed with it. And
23:31
yes, I probably shouldn't have reacted in how
23:33
I have with some of the videos, but I just...
23:36
I get so annoyed at people's perception with
23:37
IBD that they don't think it's that bad and they
23:39
just think it's a pooing disease, when in fact
23:42
we do suffer a lot with other problems associated
23:45
with IBD. And the misconception of, which I know
23:49
IBS is terrible, I've got friends that have got
23:52
IBS and they do suffer, but IBD is not IBS. And
23:57
some of the things that I see on here just really
24:01
rile me up. I don't know where I've got the confidence
24:04
from, to be honest. I try not to sound rude to
24:07
people because I'm not that kind of person. But
24:09
I like to get it across because I'm so protective
24:12
over it. I know it sounds silly, but I'm so protective
24:15
over the IBD community because there's a lot
24:19
of misconceptions with it. And I don't accept
24:21
that. I don't accept it at all as somebody who's
24:23
gone through it and has gone through hell. Do
24:26
you know what I mean? And there's a lot of others
24:27
as well. And I just call it out now. I just call
24:30
it out because I've had enough of it. Yeah, absolutely.
24:33
And you just, I mean, you said just now, oh,
24:35
maybe I should not be this harsh or something,
24:37
but I disagree with you. I think you should be
24:39
because you just said it, you know, there's an
24:41
IBD community and a lot of people speak up for
24:43
themselves, 100%. But I think the IBD community
24:46
of people that are a little bit shyer or that's
24:49
facing the same sort of ignorance or misconceptions,
24:51
seeing somebody like you, I think that empowers
24:53
them and empowers them to see somebody who is
24:55
maybe a little bit more aggressive than others,
24:57
right? So I think from my point of view, keep
25:00
doing what you're doing. I don't think you need
25:01
to apologize for anything. It's really great.
25:04
Talk to me maybe a little bit about some of the
25:07
major misconceptions that you just keep seeing
25:09
that really tick you off. I know you talked just
25:10
about IBS, IBD, but give me maybe one or two
25:12
more. What is it something that you just keep
25:14
on seeing where like, oh my God, guys, we need
25:16
to stop with this? Oh, it's the food aspect.
25:19
Now I know, I understand what some people are
25:22
saying, like certain foods will trigger you off.
25:24
We all have different triggers and things. But
25:27
the whole just eat better and you'll be fine.
25:29
Just eat and exercise and you'll be fine. Trust
25:31
me, I've done that. I've done that. My diet has
25:35
been perfect at times. And my exercise, I exercise
25:38
a lot. And sometimes it makes absolutely no difference.
25:41
And telling me to try all these other diets.
25:44
And I've tried it and it doesn't work for everyone.
25:47
Sometimes it does for some people, which is absolutely
25:49
great. But there's this massive misconception
25:51
that this one diet or just diet alone is... going
25:55
to help you. Some people need the medication
25:58
and I don't like that either when some people
26:01
come on here saying, oh, you don't need all these
26:03
immune suppressants. They're really bad for you,
26:06
blah, blah, blah. And I've heard that as well,
26:09
which is really bad. And I'm like, some of these
26:10
medications save people's lives. When it comes
26:13
to IBD, you can't be going around telling people
26:16
that they need to speak to their gastroenterologist
26:18
and do their own plan. They need to think for
26:21
themselves, stop spouting, things like that.
26:24
That's the worst one for me, to be honest. That's
26:27
the main one, really, that really gets on my
26:29
nerves. Oh, yeah. Same here. It's like, hey,
26:32
eat this, drink this. And, you know, oh, I healed
26:35
my colitis or my IBD naturally by adjusting my
26:39
diet. I'm like. Yeah, there's something that
26:41
doesn't sound right too right. You know, I think
26:43
it's a combination of a lot of things. And I
26:44
spoke to a dietician recently as well. I said
26:46
like, you know, no, I mean, food plays a role,
26:48
but it's just not the main reason. And that's
26:51
just not one single way to cure this. Kind of
26:57
coming back full circle as we sort of move towards
26:59
the final part, you talked a lot about support.
27:03
Again, your husband, your dad, your family. There's
27:07
a lot of advice that... we as IBD warriors can
27:09
give to people who live with the disease. But
27:12
lots of times, the people who don't have IBD,
27:15
but who live with somebody or who love somebody
27:17
with IBD, they struggle as well because they
27:20
want to support, but they don't really know how
27:22
to. So as someone who has received incredible
27:25
support from your close ones, what kind of advice
27:28
do you have for friends or family who are supporting
27:31
someone with IBD, especially when they don't
27:34
know how to approach it? Just be there. Just
27:37
listen. I know that sounds like really mediocre
27:41
advice, but just listen because I sometimes feel
27:45
like I go on a little bit and ramble to my husband
27:47
and my mom and dad and things, but that's all
27:49
I want them to do. I just want them to listen
27:51
and just validate my feelings. My husband's absolutely
27:54
great at it. I don't know how he puts up with
27:56
it sometimes when I go on and on and on. But
27:59
the biggest main thing for me is just having
28:01
somebody who will listen to you and who will
28:03
just support you as in... But when I ask my husband
28:06
to go and get me some certain foods, he will.
28:09
He doesn't, you know, he's very patient. And
28:12
I think with somebody with IBD, you do have to
28:16
be very patient because they're going to have
28:18
their up and down days. And when the down days
28:20
are here, they can be quite bad, to be honest.
28:23
And specifically myself, I don't know about anybody
28:26
else, but my mood can change if I don't feel
28:28
very well. I can get quite irritable and I know
28:31
that myself. And my husband is very patient.
28:34
So a lot of patience and just being there just
28:37
to listen. That's the main thing that's helped
28:39
me a lot. And you just said that might sound
28:42
so simple, but those simple ones actually play
28:45
a huge, huge role. And they're very, very important.
28:48
A lot of people don't know how to listen. That's
28:50
the thing, right? They just want to overcompensate
28:52
and just be there. And then it becomes sort of
28:55
like they're pushing their opinions on some others.
28:57
So I think what you're saying is absolutely true.
28:59
I think exactly the same way. If you look back
29:04
at your IBD journey, and if you could speak to
29:08
yourself on the day that you were diagnosed,
29:11
what would you say and what would you wish you'd
29:16
known maybe from the start or much earlier? I'd
29:20
say it's going to be a tough journey. It's going
29:22
to be really tough, but you will get through
29:24
it. You'll become a better person for it, if
29:26
anything. and when they offer you that stoma
29:29
surgery just have it don't put it off don't try
29:32
and be some hero that thinks i don't need this
29:35
i don't need it i'll do it myself i'll be absolutely
29:38
fine because you won't so listen to the healthcare
29:41
professionals and just ride with it just go with
29:45
it because that's what i wish i wish i'd have
29:47
done i wish i hadn't tried to be some warrior
29:50
that can get through it myself when i can't yeah
29:53
do you think that in our lifetime we'll see an
29:58
IBD cure? I would hope so. I would really, really
30:03
hope so because it's a horrible disease. I wouldn't
30:06
wish it on my worst enemy. It's really horrible.
30:09
And I know it would be a bit too late for people
30:12
like me who've already got a stoma, but I'd take
30:15
it. If there was a cure, I'd take it straight
30:17
away to cure Crohn's and colitis. I really would.
30:20
And I would hope so in our lifetime. Fingers
30:24
crossed. Fingers crossed, exactly. And that's
30:26
kind of a message of hope. And that's why I always
30:28
like to end the show as well, because IBD brings
30:31
about a lot of challenges, but stories like you,
30:35
they bring out hope as well. even with surgery.
30:38
It's all about getting the quality of our life
30:41
back anyway. And it doesn't really matter how
30:43
we get that back as long as we get it back. And
30:45
I think you're really the epitome of a person
30:47
who went through a lot, had the surgery, and
30:50
now really lives her life, at least with IBD,
30:53
almost better than before. So Harriet, thanks
30:58
so much for talking to me. I think this was really
31:00
great, really inspiring. And please keep doing
31:02
what you're doing, especially on TikTok. And
31:05
please stay the... you know, sort of harsher,
31:07
aggressive view. I cannot stress it enough. It's
31:09
really refreshing to see somebody like really
31:12
calling out all the bullshit out there. So keep
31:14
doing that. And I wish you nothing but the best
31:16
moving forward. Thanks so much for talking to
31:19
me today. Thank you. Thanks for having me on.
31:21
I've enjoyed it. That's it for today's episode
31:24
of Kaleidos Unfiltered. I'm Frank Tabering. And
31:28
if this hit home or hit your gut, do us a favor,
31:31
subscribe to the show and follow us at Kaleidos
31:34
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31:40
inspiring stories from the bathroom floor.