Latest / Crohn's & Colitis Unfiltered / Crohn’s, motherhood and resilience: Liesel’s refusal to give up

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Crohn’s, motherhood and resilience: Liesel’s refusal to give up · Crohn's & Colitis Unfiltered

0:02
I was envious, I think, of some of the, it just
0:05
seemed easier for other people. And I shouldn't
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judge because, you know, we just don't know what
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other people are going through. I'm sure there
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were people who looked at me and didn't realize
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the struggle that I was going through. But to
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me, it seemed it was easier for everybody else
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or many other people. So it did make me sad.
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I thought, that's a shame. I missed out on that.
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I missed out on the crucial months of my baby's
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development. Chronic illness does that, it takes
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that away from you, it takes the normality away
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from you. And it can be easy to fall into a bit
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of self -pity sometimes. And I think that's okay
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every now and then to go, you know what, I'm
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sad for myself. Welcome back to Colitis Unfiltered.
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My name is Frank Tabering, and on this show,
0:46
we talk everything IBD. Today, I have the pleasure
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of speaking with Liesl, who got diagnosed with
0:52
Crohn's disease at age 25 in Sydney. Australia.
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So Liesl, welcome to the show. Thank you, Frank.
1:01
So let's start with the basics. We're going to
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go back in time a little bit, and I would love
1:06
for you to share with us how your Crohn's disease
1:10
first started to manifest, the time where you
1:13
noticed that something was wrong and that you
1:16
needed some sense of medical attention. I was
1:20
22 and I was a university student and I just
1:23
started to notice suddenly my knees, both of
1:25
them swelled up. They became very painful and
1:27
swollen and I had red lumps on my shins. And
1:30
I'd been a very active person, so I thought that
1:33
was very unusual and it was affecting my life.
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So I went off to the doctor quite quickly and
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said, I'm a bit worried about my knees. What's
1:40
happening? They were both x -rayed and they said
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they're normal and that was about it at that
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point. I wasn't very medically aware. So, you
1:48
know, told... Your knees look fine. Okay, good.
1:51
So I carried on with life and then I noticed
1:53
that I was getting very, very tired and I was
1:56
getting abdominal pain and I was losing a bit
2:00
of weight and I just didn't feel well in myself.
2:05
But it was very gradual, headaches, fatigue.
2:08
Again, I went back to a doctor. It was a different
2:10
doctor this time because I was at university
2:12
and there were different doctors at the clinic.
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It was very vague and nonspecific, my symptoms.
2:18
So I had some blood tests which said, you're
2:20
a bit low in iron, that's probably why you're
2:22
tired. And again, I was left with fairly no answers.
2:26
And I didn't push very hard because I thought,
2:28
well, if there was something wrong, they should
2:30
be able to tell me. So it wasn't until I started
2:33
noticing that I was having blood in the toilet
2:36
bowl, actually, that I went, oh, there's something
2:38
really wrong here. Now, that was a process of
2:41
about two years from my very first symptoms to
2:44
when that started to happen, which is when we
2:46
really pushed and I ended up having a colonoscopy
2:48
and being diagnosed at that stage. But it did
2:52
start off very subtly. So then at the stage of
2:55
the diagnosis, when your doctor... mentioned
3:00
Crohn's disease. What went through your mind
3:03
at that point and had you heard of Crohn's disease
3:06
before or was this completely new to you? I that's
3:12
a good question I knew one other girl who had
3:15
had Crohn's disease she was the sister of a friend
3:17
of mine and I'd been to visit her in hospital
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because she'd had a resection of a small bowel
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segment and that's about all I knew and this
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was the 1990s and information wasn't like it
3:27
is now we couldn't access it very easily there
3:29
was no internet essentially I did look it up
3:32
in the library and found some textbooks and read
3:34
a bit about it but um It didn't really, because
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I think there was not a lot was known in my community
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and because I didn't know a lot about it, I kind
3:42
of, my doctor said, look, take the medication.
3:45
It'll probably live your life and we'll see how
3:48
it goes. So I didn't really pay it that much
3:50
attention because I didn't know enough. Of course.
3:55
So keyword medication. This leads into my next
3:59
question. How did you mentally but also physically
4:02
navigate life after diagnosis? And what treatments
4:06
were you on post -diagnosis? So initially, I
4:11
was on mesalazine, which is a fairly amethyst
4:14
cell. I don't know what it's called around the
4:15
world, but mesalazine is the brand name. And
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I was on that two tablets three times a day,
4:19
an hour before food, which I found quite difficult
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to do, actually. As I was a student, I was also
4:24
studying. I was working as a waitress to fund
4:27
my studies. So doing that was quite difficult.
4:29
And I probably just didn't really understand
4:32
the severity of what could happen. So I just
4:36
went, okay, well, it still didn't feel particularly
4:37
well. I was still losing a bit of weight. I still
4:40
had sore knees. But I just kind of got on with
4:43
it. I think, again, because there wasn't a lot
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of information for me to access. There were no
4:48
pamphlets that I was given. There were no handouts.
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There was no internet. So I just... put up with
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it because i guess i was fairly stoic about it
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and so mentally i was a bit upset that i wasn't
5:00
quite as well i stopped playing tennis and sport
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because my knees hurt and i didn't feel well
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but i didn't raise that my hand up and say you
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know what i'm not doing very well i just kind
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of kept it quiet to myself so when you when you
5:15
said that you're sort of stoic about it Does
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that mean then that your symptoms were more of
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the mild category? Because Crohn's disease, right?
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Sure, it can manifest very differently from person
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to person. But typically, you know, it's not
5:31
a quiet disease either. How did you navigate
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your social life then? And then how were you
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feeling actually through that period? That's
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a good question. When I look back now, I just
5:43
definitely did withdraw a lot socially. So I
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was the sort of person who did a lot of sport.
5:47
I played tennis every weekend and I stopped doing
5:49
that. I stopped going out because certain foods
5:52
really affected me. And I didn't feel well, so
5:55
I didn't go out. And I did isolate. Looking back,
5:58
I definitely became a much more isolated person.
6:01
I didn't want to talk about it. I didn't tell
6:03
people why I wasn't going. I just said, oh, I'm
6:06
busy or I'm working or I'm studying. I've got
6:08
exams. I didn't talk about it very much to anyone,
6:12
actually. I wish in retrospect I had, but at
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that time I didn't have that confidence to do
6:17
that. So I was missing lectures. There were times
6:20
when I'd be stuck in the bathroom and I would
6:22
miss a whole lecture or two lectures. I'd have
6:24
to explain to my tutors I wasn't very well or
6:26
get a note from my doctor, but I didn't tell
6:28
people why I was missing that. I think there
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was still quite a lot of me being embarrassed
6:35
about my symptoms and not wanting to talk about
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it. So you isolated a little bit. This is kind
6:41
of typical for people who are living with IBD.
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You got diagnosed sort of post -teenage years,
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so you were really moving on to your adult life.
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You said that you were in college, basically,
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you know, when everything sort of started. Even
6:58
at that age, you're still developing as an adult,
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so it's quite a crucial time in someone's life.
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How do you think... In what ways do you think
7:08
that, you know, your diagnosis and the symptoms
7:11
have impacted that stage of your life? Do you
7:13
feel like you, and you mentioned it, of course,
7:16
you know, you missed lectures, but other than
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that, do you feel that Crohn's disease sort of
7:19
put the brakes on your life, didn't really give
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you this stage of adulthood, the 20s that other
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people around you were living? Yes, I definitely
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think so. So I became anxious and I hadn't been
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an anxious person before that, but suddenly I
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became anxious because I needed to know where
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bathrooms were. I became anxious because I was
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worried I'd be given food that I wouldn't be
7:39
able to eat and how would I explain that when
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I usually ate that kind of food and my diet was
7:45
becoming more and more restricted. So I became
7:47
anxious and avoidant and quite depressed actually
7:50
when I think back now about how my life had contracted
7:55
down from being this person who just lived their
7:57
life and did their stuff to suddenly going, I'm
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stuck at home. I'm worried about the bathroom.
8:02
I can't eat all these foods and I can't tell
8:04
anyone about it. So I do think that I was, some
8:08
of that aspect of going out and partying just
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stopped. Not that I was a big partier, but suddenly
8:13
I wasn't engaging in those activities anymore
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and people didn't know why. So I did feel that
8:19
I missed out definitely on those crucial years.
8:23
Back in that time, with the internet sort of
8:26
barely kicking up, not having a lot of information,
8:31
not having, let's say, online communities, not
8:33
having social media to interact with other people
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who had IBD, how does one fight through that
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state of depression then? That's hard. I did
8:43
talk to my doctor every now and then, but I just
8:46
think... I put up with things that I wouldn't
8:49
put up with now because I just had a lack of
8:52
knowledge about things. So I just did the best
8:55
I could do. I had to get through uni. I had to
8:58
get to my job to earn money to go to university.
9:01
So I think I just... became a bit more, not resilient
9:08
because I didn't feel resilient, but I did start
9:11
to rely on myself a lot more rather than other
9:13
people. I'm a bit sad about that because wouldn't
9:15
it have been great to talk to other people, have
9:17
the online communities we have now and reached
9:19
out? I would have been comforted by that. I felt
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it was distressing. It was distressing to have
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these symptoms that I couldn't talk to people
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about. And the way I dealt with it was probably
9:29
by isolating and restricting my life, which is
9:34
very sad in retrospect. So you mentioned resilient,
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you said that you didn't consider yourself resilient
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at that time. I do have a feeling, without wanting
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to spoil it too much, that you did end up becoming
9:45
more resilient as the years went by because your
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IBD journey definitely does not stop there, right?
9:50
It doesn't stop with the diagnosis, it doesn't
9:52
stop with just mesalazine. So now take us through
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how Crohn's disease then kept impacting your
9:58
life as the years went on. It did impact a lot,
10:02
and it actually impacted quite quickly. So I
10:04
was diagnosed at 25, and by the age of 27, I'd
10:08
actually gotten married, because I had a boyfriend
10:11
and a fiancé before I was diagnosed, and I had
10:14
a child, and I became quite unwell during that
10:17
pregnancy, which is unusual because usually IBD
10:20
gets a bit better. But I wasn't well. So I actually
10:24
had to have her a bit early. So I had a cesarean
10:26
section because I wasn't well at all. And then
10:29
things progressed very quickly. So from being
10:32
somebody who sort of managed her disease, I became
10:34
somebody who was really tied to home. I was in
10:37
pain. I had a new baby. I literally had to put
10:41
her bouncer in the bathroom because I never knew
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when I was going to have to run to the bathroom.
10:45
It was very severe. And then my specialist said
10:49
to me, I think we need to do another colonoscopy.
10:51
You need to stop breastfeeding your child. You
10:53
need to be on medication, stronger medication.
10:56
And that... prep for that colonoscopy put me
10:59
into hospital in the middle of the night. I remember
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three o 'clock in the morning being driven to
11:02
hospital. I was heart rate of 150. I had a fever.
11:06
I was very unwell. So my disease progressed quite
11:09
quickly after having a baby and I was admitted
11:11
to the emergency department and in the hospital
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that night, my baby was four months old and I
11:17
was very, very, very sick at that point. So the
11:19
colonoscopy showed that the Crohn's, which had
11:22
just being actually in a distal part of the bowel,
11:24
so the last part of the colon was now all the
11:26
way through the colon, and I was very unwell
11:29
and needed to be on intravenous medication, so
11:31
high -dose steroids, antibiotics, and then very
11:37
restrictive in eating to the point where I couldn't
11:39
eat at all. And I had something called a TPN
11:42
line in place, so a central line in place, and
11:44
I was being fed by... directly into my veins
11:47
so i call it total parenteral nutrition where
11:50
i couldn't actually anything at all i was only
11:51
allowed to sip water so my disease progressed
11:54
very fast a lot of people kind of had this indolent
11:57
journey where it comes and goes and they have
11:59
it for years and years mine just ramped up very
12:01
fast with those months to the point when then
12:04
i needed emergency surgery on a sunday afternoon
12:06
so and that was a very long time ago now for
12:09
me that's more than more than 25 years ago so
12:14
People have so many different experiences with
12:17
this. So surgery on a Sunday afternoon, was this
12:21
just, you know, sudden in the moment? Did your
12:24
doctor warn you about this? Did you have a chance
12:26
to discuss this with your doctor or surgeon of
12:29
what was going to happen to prepare yourself
12:31
for what's going to be next? Take us a little
12:33
bit through that surgery and then the next steps
12:37
essentially in your IBD journey. So I had had,
12:40
I'd been in hospital for two weeks when my surgeon
12:42
started to talk to me about the fact that I actually
12:44
wasn't getting better. I was only getting worse
12:46
despite high dose steroids, which is basically
12:49
all they had for treatment in those days for
12:51
that kind of illness. That severity of illness
12:53
was high dose prednisone, but through a drip,
12:56
so hydrocortisone. And not eating at all and
12:59
being fed through a tube in my neck. Despite
13:02
all those, I was getting worse and losing a lot
13:04
of weight. And he said to me, I'm very worried
13:06
about you. Your health is at risk. Your life
13:08
can be at risk. And we have to start talking
13:10
about surgery. Now, when he mentioned that and
13:13
he started talking about a colectomy and an ileostomy,
13:16
I was extremely devastated. I remember wailing.
13:21
You know, I was in hospital and I just remember
13:23
losing it and sobbing and going, I don't want
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to have that surgery. I don't want to do that.
13:29
So I really had that discussion with him. But
13:31
then what happened too, I'm glad I'd had that
13:33
because two days later. I got an infection through
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the central line. So I got sepsis, which means
13:39
I had a severe infection and I had a very high
13:43
fever, high heart rate, and sepsis is something
13:46
that kills people if it's not treated. So I'd
13:49
only had a very brief discussion about surgery
13:51
before it became apparent that I really did need
13:53
surgery because they weren't really sure where
13:55
the sepsis was coming from. Did I have a, you
13:58
know... a bowel that was about to rupture and
14:01
needed to be removed, which is what they were
14:03
worried about. So I was taken there. He was called
14:06
in. My surgeon was called in and he briefly discussed
14:09
with me, we really need to go to theatre and
14:12
we really need to do this operation. And by which
14:14
stage I really felt like I was dying. I actually
14:17
did. I thought, looking back, I thought this
14:19
is how it feels to die. And so I gave permission.
14:22
I said, yes, do whatever you need to do to make
14:25
me better, which I'm really glad I did. because
14:29
it did make me better. So I had that emergency
14:32
operation and it was a five and a half hour operation.
14:35
And I now know that my parents and my husband
14:38
at the time were very anxious I wouldn't make
14:41
it. And I didn't fully realize how sick I was.
14:44
So I woke up in intensive care that night in
14:48
a lot of pain and a lot of drugs. I woke up with
14:53
a bag. But what I remember about that night was
14:56
just... the intensity of what had happened and
14:59
the pain I was in. But it happened so quickly,
15:01
there wasn't really time to think about it. It
15:04
was a done to save my life and I'm forever grateful.
15:07
I will never not be grateful for that because
15:09
I think without that surgery, I wouldn't have
15:11
survived. So now you woke up, your life's changed
15:17
in an instant, essentially, because there's something
15:19
very different about your body. Yes. What happened
15:23
next in your journey? I woke up and I was moved
15:27
eventually I was moved from intensive care to
15:29
the ward and a stoma nurse came by and talked
15:32
to me about what had happened to my body and
15:34
it was quite shocking actually because I didn't
15:37
have one of those nice neat operations where
15:39
it's all done with keyhole surgery I had a great
15:41
big you know incision right from right down my
15:45
entire abdomen down the front and then I had
15:47
the bag as well so I found that very confronting
15:49
initially I was like wow That's a lot of scars.
15:52
But I started to feel better almost straight
15:55
away. So the fact that I picked up after that
15:59
and went, oh, it was like this diseased organ
16:01
was out of my body and I started to feel better
16:04
and I was so grateful to be alive meant that
16:06
even though it was confronting and it was scary,
16:11
I was... grateful and I just listened to what
16:14
the stoma nurse said to me and she helped me
16:16
get in the shower the first couple of days showed
16:18
me what the bag what had to be done and it was
16:22
it was confronting but as I said I was grateful
16:26
because now I got to go home to my baby who was
16:28
five months old by that point and I wanted to
16:31
get back to her so I just accepted it when my
16:35
life has been saved and now I get to be a mother
16:38
and so I'll find a way of dealing with this.
16:41
But I didn't want to tell anyone for a while
16:43
about what had happened. What is motherhood like,
16:47
living with Crohn's disease? Yes, your baby was
16:52
young when you had your first surgery. But I
16:55
would say surgery, or at least one surgery, is
16:57
not necessarily a cure to IBD. And I think in
17:00
your case also, you've continued to have and
17:03
experience some medical complications or issues
17:05
throughout your life. IBD, right? IBD takes a
17:10
lot of our energy. Most of the time, we just
17:12
want to be by ourselves. We want to suffer in
17:14
silence. But when you have a small child that
17:17
you have to care for at the same time, how do
17:19
you navigate that? That was hard. Initially,
17:22
I needed a lot of help. So I'd lost a lot of
17:24
muscle. When I first came out of hospital, I
17:26
actually couldn't even hold my baby. I was that
17:27
weak. So my sister moved in. She'd actually moved
17:30
in and helped look after my baby when I was in
17:33
hospital. And she stayed on and helped and she
17:36
fed me. She's a chef and she would feed me, feed
17:38
my baby, look after me until I was strong enough.
17:41
So that took a while. And then I just paced myself.
17:44
I just kind of just did the basics that I needed
17:47
to do every day. Got some help with the baby.
17:50
which is from family and friends who came around
17:52
and helped. But it was hard and it has been hard
17:55
over the time when I haven't been well and I've
17:57
had flare -ups of other things because Crohn's
17:59
doesn't just affect your bowel, as we know, that
18:02
there have been times when I found it hard to
18:04
parent because I'm tired, I'm feeling unwell.
18:10
I have abdominal pain or whatever it is that
18:12
I have at the time and I still have to get kids
18:14
to school or I still have to pick up children
18:17
from sport or there's still a parent -teacher
18:19
interview to go to. So those times have been
18:22
difficult, really. When I look back, I just navigated
18:29
them somehow. I think I've always been a fairly
18:31
positive person and so I just kind of go, I'll
18:33
make it happen. There have been times when I
18:35
would say to the kids, because I had a second
18:38
baby after that, you know, I just need to rest
18:41
today. Let's do something at home. But I felt
18:44
guilty. I felt guilty at times that I couldn't
18:46
give to my children when I was sick. I couldn't
18:49
give them the energy that other people could.
18:51
And that leads straight into my next question.
18:53
Were you ever envious of other people, other
18:56
moms, watching them? struggle less well at least
19:01
not with Crohn's or IBD do you feel like you
19:03
missed out on a very crucial time of a let's
19:07
say calmer sense of motherhood yeah I was envious
19:12
I think of some of the it just seemed easier
19:15
for other people um you know And I shouldn't
19:18
judge because, you know, we just don't know what
19:19
other people are going through. I'm sure there
19:21
were people who looked at me and didn't realize
19:22
the struggle that I was going through. But to
19:24
me, it seemed it was easier for everybody else
19:27
or many other people. So it did make me sad.
19:30
I thought, that's a shame. I missed out on that.
19:32
I missed out on the crucial months of my baby's
19:35
development. And I remember very, very distinctly.
19:39
My sister had said to me, I think she needs to
19:41
be fed solids now, this baby of yours, because
19:43
she's waking up in the night. And I said, please
19:46
don't do that without me. And they brought her
19:48
to the hospital for her first solids so that
19:51
I would be witness to that because I would have
19:53
missed out. And I did miss out. And I did miss
19:56
out. So I think chronic illness does that. It
20:00
takes that away from you. It takes the normality
20:03
away from you. And it can be easy to fall into
20:06
a bit of a pit of... self -pity sometimes and
20:09
I think that's okay every now and then to go
20:11
you know what I'm sad for myself as long as you
20:15
don't stay there and you don't I'm not able to
20:17
get out of that so lots of physical struggles
20:21
mental struggles today when I speak to you when
20:25
I look at you you seem to be doing okay, at least
20:28
just by the looks of it. Now, we know that IBD
20:30
has sort of this reputation of being an invisible
20:33
disease, but it seemed to me that you did get
20:37
your life back. Between that period of first
20:40
surgery, being a mother of a five -month -old,
20:44
and now, at what point do you think in your life
20:48
did you reach that sort of... moment of calmness,
20:53
right? Where you felt like you had your Crohn's
20:58
mostly under control. The moment where you said,
21:01
listen, now I went through my struggles, I am
21:04
better now, but long term. When did that happen?
21:09
What else happened between sort of that first
21:11
surgery and adjusting to life and the person
21:14
you are today? Quite a lot, actually. So I think
21:18
with, like you said, with IVD and Crohn's, it's,
21:22
I got wary of saying everything's fine and my
21:24
Crohn's is fine because invariably something
21:28
would come up. So initially I didn't actually
21:30
need any medication. The surgery had worked really
21:32
well. I felt great. And then three months after
21:35
that surgery, I had a small bowel obstruction
21:36
from scar tissue and I ended up back in emergency
21:40
surgery having another operation, which had come
21:42
completely out of the blue to me. You know, I
21:44
thought, wow, okay, what's this? And that was
21:47
another setback. And I recovered from that operation
21:51
as well. And that was another big operation because
21:53
they couldn't do a keyhole because I had too
21:55
much surgery, too much scar tissue. So after
21:58
that, I went, okay, everything will be fine now.
22:00
But then I started to get some of the other things
22:03
that Crohn's can lead to. So I got joint pain
22:06
again. I got some skin issues. I got fatigue.
22:10
I had some problems with the stoma. And so then
22:15
I had to go back on medication. I had to go back
22:17
in immunosuppression. which really disappointed
22:19
me at the time because I thought I had cured
22:22
this disease. I used to say to people, I had
22:24
Crohn's disease. And I realize now how naive
22:29
that was. I really had to get my head around
22:32
that just because I had had surgery didn't mean
22:34
I still had the disease. So that was a bit of
22:38
a mind thing. I really had to wrestle with myself
22:41
and go, okay, you have Crohn's disease. You've
22:45
had surgery for your Crohn's. You've had surgery
22:46
twice. And then I needed surgery again because
22:49
in the initial surgery, it was an emergency surgery.
22:52
So they took the whole colon, formed the ileostomy,
22:56
but left behind the rectum because it would have
22:58
been far too, I was too unwell. And two years
23:01
later, I started having a lot of trouble with
23:04
the remaining bowel that was there. So a lot
23:06
of inflammation. Again, I lost weight. I had
23:08
back pain. I felt really unwell. And the surgeon
23:11
said, we have to take that out because it's a
23:14
cancer risk and it's also making you sick. So
23:17
I think the disappointment comes when you think
23:19
I'm cured because there is no cure, right? I
23:22
think all that just goes, I'm well or I'm not
23:24
well. And that's how I deal with it now. I'm
23:26
in remission. Great. That's fantastic. Do the
23:29
things I want to do. And fingers crossed that
23:32
I don't have a flare of something at some point,
23:34
but I have. unfortunately, over the years. I
23:37
needed drugs and I'm still on medication. The
23:40
one thing, though, Frank, is the medication has
23:42
improved so much over the years, from salazine
23:46
and prednisone to biologics, which have completely
23:50
revolutionized the treatment of Crohn's disease.
23:52
So there's a bunch more. I was on the very first
23:56
biologic in 2006 and I said to my gastroenterologist,
24:00
because it worked really well, what happens when
24:03
it doesn't work anymore? He said, there'll be
24:05
more. And sure enough, we've had so many more.
24:08
So that's given me hope. But yeah, you can't
24:13
rest on your laurels with this illness. It can
24:15
come back at you when you least expect it, unfortunately.
24:20
And that's the disappointing thing about it.
24:22
You can feel really well and you'll be doing
24:24
great and then something will stop you in your
24:25
tracks. Yeah. So yes, it's a constant battle,
24:29
not just with your body, but also with your mind,
24:31
because you want to stick to hope. You want to
24:34
not get angry with your body, with the world.
24:40
You need to build up a certain resilience. So
24:44
let's go back to resilience. At the beginning,
24:46
you said that you were not that kind of resilient
24:48
person, or you would not think of yourself as
24:50
resilient, but... How do you stay resilient after
24:54
everything that you've been through? It can be
24:59
hard, is what I'll say. And there are definitely
25:01
days when I know I'm actually a very resilient
25:04
person now. I'm very resilient. I've dealt with
25:06
so many things. And each time I have a setback,
25:08
I go, I dealt with this last time or something
25:10
similar. I can do it again. And that's helped
25:12
me build resilience to think back to things,
25:14
the bad times ago. I got through that, so I'll
25:17
get through this now. But there are still days.
25:20
and times when I don't feel that resilient and
25:24
when I feel sad or angry or upset. And some of
25:27
the complications I've had from immunosuppression,
25:29
which I'll talk about, have led me to those days
25:32
when I've just been angry and upset and not felt
25:34
resilient and just wanted to stay at home and
25:36
not talk to anybody. And that goes along with
25:39
resilience. We can be resilient, but we can be
25:42
sad about things at the same time. So being resilient
25:45
doesn't mean that you don't feel pain or upset
25:47
or sad or angry. It just means that you know
25:51
that when you have those times that you'll get
25:53
through them and you'll get back to your baseline
25:56
resilience at some point. I think that's what
25:58
resilience means to me because it would be naive
26:03
of me to say nothing is bad going to happen and
26:06
I should feel good all the time. I don't feel
26:08
good all the time. There are days I know I look
26:11
great now, but there's days when I haven't felt
26:13
great, even in the last couple of months. Yes,
26:16
yes. Key phrase, you don't feel good all the
26:19
time. So you touched on a couple of more complications
26:23
coming from being immunosuppressed. Give us a
26:26
brief summary of those complications. And then
26:29
I would love for you to answer the following
26:33
question. If you look at all those complications
26:36
that you've lived, how did you deal with anger?
26:40
as you navigated those challenges? All right,
26:43
well, let's start with the challenges first.
26:45
So I like to think from the top down. So the
26:47
challenges for me or the complications of immunosuppression
26:50
and drug therapy have been that I've had two
26:52
skin cancers, one of which was on the top of
26:55
my head and I didn't find it till quite late
26:57
and I needed a big operation. You know, under
26:59
general anesthetic, 25 staples in my head and
27:03
then I've had another one in my nose. So I'm
27:05
more prone to skin cancers and that was a big
27:06
one. Hair loss, so my hair has become thinner
27:10
from medication, from steroids. The depression
27:13
and anxiety we've talked about already. Then
27:16
if we're working from the head down, I had a
27:18
very significant complication almost three years
27:22
ago, which was I discovered a little sore in
27:25
my tongue, and it turned out to be a squamous
27:28
cell carcinoma. which was a direct result of
27:31
the immunosuppression I had been on at the time
27:34
called azathioprine, which is renowned for skin
27:36
cancers. I'm lucky. I'm very, very lucky I caught
27:39
it early. I went and said, there's something
27:42
on my tongue. I don't like it. It's not healing.
27:44
And it was biopsied and it was cancer. So tongue
27:47
cancer can be very bad if it's caught late. So
27:50
I had one operation and that was brutal and they
27:53
didn't get it all. And then I had to have another
27:56
operation with more of my tongue removed and
27:58
also have lymph nodes cut out of my neck so I
28:00
have a scar on my neck. And that was a really,
28:03
really difficult operation for me. I found that
28:07
really difficult and I'll tell you why in a minute.
28:09
Some of the other complications I've had is I've
28:11
got osteoporosis from the steroids and I've got
28:14
a lung infection now that I've had for three
28:16
years and I can't get rid of in my right middle
28:19
lobe of my lung. So I've been colonized by a
28:22
bacteria that we can't get rid of. So that goes
28:24
up and down, makes me feel very tired and cough,
28:27
and that's frustrating. So those are the sorts
28:30
of complications I've had, just more infections,
28:32
definitely more infections. I've had viral meningitis
28:35
twice, which I've been in hospital for a while
28:38
and been really sick with. I tend to get sicker
28:41
and stay sicker for longer, so I'm more prone
28:43
to those things. So those are the sorts of things
28:45
that are going on in the background. you know,
28:47
significant things for me that need treatment.
28:49
So I need treatment for osteoporosis. I need
28:52
treatment for my lung infection. I've needed
28:53
surgery for skin cancers. I've needed hospitalization
28:56
for meningitis. But really the one that rocked
29:00
me the most of all of those things was the tongue
29:02
cancer. Because I knew that if I hadn't found
29:06
it early, what could have happened. And one of
29:11
my ways of dealing with my stress is to talk.
29:15
When you've had tongue surgery and you've had
29:17
your, you can't talk. So I was stuck at home.
29:20
I couldn't talk. I couldn't eat properly. So
29:23
I couldn't eat the things that I enjoyed because
29:25
it hurt too much. I couldn't exercise, which
29:27
is another way that I deal with stress. I found
29:30
that very bleak. So I really struggled with that
29:34
diagnosis because I didn't have any of my usual
29:39
coping strategies. And I was staying in bed.
29:44
staring at the wall and doom scrolling Facebook
29:47
and binge watching shows to try and stop myself
29:51
from feeling so bad. But I did feel bad. I felt
29:54
really low during that time. And it took a while
29:56
to come out of that. And it made me more anxious
30:00
about what could happen. Like, okay, so I've
30:03
had two brushes with cancer. The skin cancers
30:05
were dealt with. They weren't melanoma. And tongue
30:08
cancer was a thing. I still have to follow up
30:10
for that, right? So there's a 10 % chance it
30:13
could come back. And that really shook the foundation
30:17
of me feeling that I had some control. I went,
30:19
oh, I don't really have what control I thought
30:23
I had. And that's been a little, I've had to
30:25
talk to people about that, you know, and say,
30:27
how do you deal with this? Because of all the
30:29
things that have happened, this has been the
30:31
one that's probably scared me the most. It's
30:34
made me go, what's next? Yeah, exactly. And so
30:38
this anger that you build up potentially going
30:42
through this, how do you deal with that? When
30:43
is enough enough? How did you keep going? I wrote.
30:47
So I wrote some stuff. So I like to write. It
30:51
helps me to get my feelings out. Sometimes I
30:54
just write angry things, not necessarily about
30:57
me or the disease, but also I thought about illness
31:01
and how it affects people's lives. And so writing
31:04
for me was cathartic. I really find that helpful.
31:07
Most people don't see what I've written. It's
31:09
for myself only. I couldn't say it's a journal.
31:12
I just would say that it's some writings that
31:14
when I feel deeply, I will write about that.
31:18
And sometimes I'll go back and read it later
31:20
and go, oh, like months later and go, wow, okay,
31:23
it sounds like I was really struggling then,
31:25
wasn't I? And then I go, I'm not struggling now,
31:27
so I think it helps. I'm talking to have a wonderful
31:30
husband who is very, very supportive. And if
31:35
I'm struggling, I can talk to him. I've got friends.
31:38
I've got a good doctor. I'm a lot more open about
31:41
my struggles now rather than trying to just do
31:44
it all on myself. I put my hand up and say, I'm
31:47
not doing so well today or I'm not doing well
31:49
this week. Those things have helped me deal with
31:51
the anger. Sometimes I'm still just angry, right?
31:54
Sometimes I still do think, why me? And then
31:57
I go, because life is random and stuff happens,
31:59
so, you know. I have to feel the anger and it's
32:04
an emotion like all others and eventually emotions
32:06
pass. So I know that I'll get through it. It's
32:09
a bit of mindfulness going, let me feel this
32:11
anger. Let me do something. Let me go for a walk.
32:14
Let me get out the adrenaline and then I know
32:17
I'll calm down and I'll feel better probably
32:19
later in the day. So I don't panic as much about
32:21
being angry. Absolutely. I mean, time heals some
32:25
wounds and then everybody develops their own
32:28
coping mechanisms or whatever they have to deal
32:31
with. There's a lot of misconceptions out there
32:34
about IBD, Crohn's, colitis. If I tell you chronic
32:42
illness limits your potential, what's your response?
32:46
It depends. So my response is it depends. It
32:50
depends what you want to do with your life. I
32:53
actually think that if you learn to live with
32:56
it well and you manage it well, it actually does
32:58
the opposite. It actually expands your life because
33:01
you understand suffering. You understand that
33:04
life can be complicated. You learn to deal with
33:06
hardship early. You develop resilience through
33:09
that. So I don't think it limits potential at
33:12
all. In fact, as I said, I think it expands potential.
33:15
And for me, it has done. I use my experience
33:17
in my job. It makes me a better doctor. It makes
33:20
me a better person. I understand what it's like
33:23
to be sick. And I can bring that to my work and
33:27
I can bring that to my patients. I think when
33:30
we talk about how it can restrict you, if you're
33:33
somebody whose disease is not ever controlled
33:35
well, that's going to affect your job. And it's
33:37
done that to me. I've had to have time off work.
33:41
So financially, it does affect you as well. If
33:43
you can't work, you can't earn an income. So
33:45
that's restrictive. It might restrict the kind
33:48
of jobs that you want to do. So for a while,
33:51
briefly, I was interested in becoming a surgeon.
33:53
Don't ask me why. It's much more interesting
33:55
to do what I do, I think, now. But physically,
33:57
my body wouldn't have held up with that. And
34:00
at one point, I did emergency medicine for 10
34:02
years, and then I went, do you know what? I actually
34:05
feel like long -term, this is not going to be
34:07
something my body can sustain. But I'd done that.
34:11
So I guess if you're thinking restriction, yes,
34:13
it can restrict. It just depends what you want
34:15
to do with your life. But it can expand your
34:18
emotional vocabulary and your ability to help
34:21
other people because you have experienced so
34:26
much yourself. It's no secret that everybody
34:29
is afraid of surgery, especially, you know, if
34:33
we focus on IBD patients. the one big thing that
34:37
nobody wants to have to live, essentially. And
34:42
yes, like in your case, and a lot of other people
34:45
too, they really don't get the choice. And sometimes
34:47
it happens so fast that they don't even have
34:50
time to process this. So your message to people
34:54
who do have the opportunity to think about it,
34:58
but who might not have the opportunity to skip
35:00
surgery. I would say don't be afraid of it. Surgery
35:05
can give you your life back, gave me my life
35:08
back. Surgery is not something to be feared.
35:10
No one wants to have an operation. But if it's
35:12
between an operation and your health being so
35:15
bad that you can't live your life, then an operation
35:18
is actually a blessing. It was a blessing for
35:21
me in disguise because it saved my life and it
35:25
allowed me to then live my life and achieve things
35:28
I didn't even think I'd be able to achieve at
35:30
all. don't be afraid of surgery talk to the talk
35:34
to people who've had it you know i've i've gone
35:36
into hospitals and talked to people about this
35:38
and what it's like and showed them my bag and
35:40
said this is how it is and this is most people
35:43
would look at me go i would never have known
35:44
i'm like no unless you tell somebody most people
35:48
in my life would have no idea that i had a bag
35:50
on my side that i have an ileostomy um so educate
35:53
yourself don't be afraid Make sure you chat to
35:58
your surgeon about what type of procedures. You
36:00
might be able to have it laparoscopically if
36:02
that's suitable, which is definitely less invasive
36:05
than having a big cut down your middle. But if
36:07
you do have to have that, if you do have to have
36:09
the big laparotomy scar, which is the big cut
36:11
down the middle, try not to be afraid of that.
36:18
Try and understand that it could give you your
36:20
life back. You went through so much that... Coming
36:25
from you, these are words that people should
36:28
welcome as words of hope. I hope so, because
36:32
I don't want people to ever give up hope. That's
36:34
the big thing. We shouldn't take hope away from
36:36
people. It's the thing that humans hang on to
36:39
and keeps us going in times when things are pretty
36:42
bad. Hope is really essential. Looking at it
36:46
today, how do you think that this medical journey
36:51
has changed you as a person or has defined you
36:54
as a person? It has made me more than I would
36:57
have been before because I understand suffering
37:00
and I've developed a resilience and a strength
37:03
that I may not have developed if I hadn't had
37:06
such hardship early on. I actually, in a way,
37:09
this will sound so strange, I'm grateful that
37:12
I had an illness that could be treated and could
37:15
be surgically addressed that allowed me to grow
37:18
as a person. and as a clinician. So I think it's
37:22
been a strength for me to bring to my career
37:25
and bring to my life. When you understand suffering
37:27
that way and you understand what it's like to
37:29
be so terribly ill and face death potentially,
37:32
it gives you a new perspective. It means that
37:35
I'm grateful for the good stuff in my life. So
37:37
every day, my motto is every single day, no matter
37:39
how bad it is, I'm going to find one good thing
37:41
because life's short and we don't know what's
37:43
happening tomorrow. So, you know, be sensible
37:46
and plan for your future, but also to... Don't
37:49
forget to look at the joy in the world every
37:50
single day because life's unpredictable. And
37:55
I'm glad that I've had the experiences I've had
37:58
because I think I'm a much richer person for
38:01
it. Would you say the exact same thing to yourself
38:06
on diagnosis day if you could travel back in
38:09
time? Or what would you tell yourself? I would
38:13
tell myself to be a little bit more educated.
38:16
But I'd also tell myself it's all going to be
38:18
okay. You're going to be okay. You're going to
38:20
survive this. You're going to come through it.
38:22
You're going to be a different person. You will
38:24
be different. Life will be different than you
38:26
imagine, but it's going to be even better because
38:28
you've experienced a range of situations and
38:33
health crises that you would never have anticipated,
38:35
and you're going to make it through, and you're
38:37
going to come out as a more rounded person. So
38:41
don't be afraid. Do take your medication. Do
38:46
ask questions. Do chat to other people. Don't
38:49
keep it to yourself. You'll be lonely, so don't
38:52
do that. And if you have a chance to be on social
38:54
media, which didn't exist at all when I was diagnosed,
38:58
get on there and share your experience because
39:01
the community out there is amazing. So that's
39:05
what I would tell my 25 -year -old self. It's
39:07
going to be tough sometimes, but you're strong
39:09
enough and you'll survive and you will thrive
39:11
eventually. Liesl, I have to say. I see you as
39:15
the epitome of somebody who got crushed by IBD
39:20
over and over again, but somebody who stood up
39:23
to the challenges, got back on her feet and kept
39:26
fighting. So your story definitely is one of
39:29
inspiration. I want to, first of all, thank you
39:32
so much for opening up today and sharing your
39:34
IBD journey with us. And I want to also wish
39:38
you nothing but the best moving forward. You
39:41
said it yourself, you never know what's going
39:42
to happen in life. You have to be ready for everything.
39:45
But I do hope that for you, you'll catch a break.
39:48
And it's going to be for quite a while. Me too,
39:51
Frank. I wish the same for you as well. Absolutely.
39:55
And we wish the same for everybody who's listening,
39:57
who is struggling with IBD or any other chronic
40:00
illness or any illness period in their lives.
40:03
So that's our message of hope today. So Liesl,
40:06
thank you so much again. Pleasure to have you.
40:07
Thank you so much, Frank. Bye. That's it for
40:11
today's episode of Kaleidos Unfiltered. I'm Frank
40:14
Tabering, and if this hit home or hit your gut,
40:17
do us a favor. Subscribe to the show and follow
40:20
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40:23
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40:27
see you soon for more inspiring stories from
40:29
the bathroom floor.