Latest / Crohn's & Colitis Unfiltered / Ulcerative colitis, gut health and remission: Kylie’s naturopathic IBD journey

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Ulcerative colitis, gut health and remission: Kylie’s naturopathic IBD journey · Crohn's & Colitis Unfiltered

0:02
I feel like I have lost a lot of trust with doctors
0:05
and medications and actually what they know.
0:09
I feel like they'll give you a medication and
0:11
it's more of a band -aid fix whereas when I did
0:14
all the work with my naturopath we did like poo
0:17
samples and blood tests and how much fibre is
0:22
in your gut and microbiome and all these extra
0:25
bits and pieces which a specialist doesn't do.
0:29
Welcome back to the Colitis Unfiltered podcast.
0:32
Today, I have the pleasure in speaking with Kylie,
0:35
who got diagnosed with ulcerative colitis at
0:38
age 35 in Adelaide, Australia. Kylie, it's a
0:41
pleasure to have you on the show today. Hello,
0:44
how are you going? Good, good. And thanks so
0:46
much for speaking with me today. We're going
0:48
to talk IBD, specifically colitis today. And
0:51
what I'd like to do at the start is just to set
0:53
the context and actually go back to where it
0:56
all began. So my first question for you today
0:59
is, talk to me a little bit about the first symptoms,
1:03
how colitis started to show in your life, and
1:07
how you realized that something was wrong with
1:11
your body, with your health. one morning and
1:15
I had this strange urgency of like I needed to
1:21
go to the toilet and I was like went to the toilet
1:23
and I was just like what the heck was that that
1:26
is not normal I think it was a couple days later
1:30
like the same thing kept happening so I decided
1:33
to go to the doctor because I was like this is
1:37
not normal I did a Few tests there. And then
1:43
I did a colonoscopy, which is where I got diagnosed
1:49
with the colitis. If you go back to the moment
1:53
that the doctor announced colitis to you, did
1:57
he explain what colitis was? Have you heard of
2:00
colitis before? And what went through your mind
2:02
as well at that moment? So I hadn't heard of
2:06
it before. The doctor was just like, here. take
2:10
these medications, take this medication. It was
2:14
like enemas and then they're cellophanzines,
2:17
I think it's called. Take this, it'll make you
2:21
better type thing. And I was just like, what
2:24
is even happening right now? It was like three
2:28
days before my daughter's first birthday and
2:31
my mind was, what the heck has just happened
2:35
to me type thing. I think I got more answers
2:38
from Google, unfortunately, than from the actual
2:42
specialist that did the colonoscopy. So the person
2:47
that diagnosed you then was a gastroenterologist,
2:49
I assume. They were, but they were very vague
2:53
in explaining to me what everything was type
2:58
thing. So yeah, it was a bit strange, to be honest.
3:01
From then on, I went back to see him and I said,
3:06
I think he'd been like about five months or something
3:10
and I went back to see him and I said how long
3:13
do I have to be on this medication for because
3:16
I wasn't seeing any improvements and he was just
3:21
like as long as it takes type thing and I was
3:26
a bit like well am I going to be on this for
3:29
the rest of my life because that's what it seems
3:31
like is going to happen right now. So I went
3:35
to another specialist in Adelaide and had a second
3:41
opinion, which they did like a signography. And
3:45
after that, I was screwed because I pretty much
3:50
was bleeding. And it was like, they just weren't
3:54
careful enough type things. So I had to start
3:58
all over again. And they just said. Keep going
4:02
with like the medications. It'll help you. And
4:05
I think this was probably about a year and a
4:07
half later when, when all this was happening
4:10
still. I remember my kids, my kids were just
4:16
like, mum, and I'd be first place I'd look would
4:20
be on the toilet. And that's where I was. How
4:22
sad is that? So you were pretty much, sadly to
4:26
say, left alone, fighting with a new diagnosis,
4:30
not really sure which direction this disease
4:33
would take you, not really sure what treatments
4:37
behind you could potentially pull you out of
4:39
the mess or out of the flares. How did it progress
4:41
then? You mentioned they put you on medication,
4:44
but did you stay on that for quite a while? Did
4:47
they put you on different treatments because
4:50
you obviously didn't get better? that journey
4:54
progressed then so I was put on um I think they
4:58
said misobent they put me on that and I was also
5:03
taking steroids they just said you've got to
5:06
take a high dosage of steroids and we all know
5:09
what happens when you take steroids and high
5:11
dosages and and they also were just like They
5:16
were kind of telling me that it wasn't that bad
5:19
that I needed to go and have other medication.
5:21
It was just borderline bad enough that I needed
5:25
to take this medication type thing. So they said,
5:30
you can go do trials at the Adelaide hospital,
5:34
go do cancer trials, which is obviously not what
5:38
I had, but that was what they were telling me
5:40
I should be doing too. So I didn't have to take
5:43
the medication that. was the next level up type
5:46
thing, which is really strange to me. I really
5:49
do feel alone at that point. So there was definitely
5:54
a lack of proactivity from your medical team
5:57
at that standpoint, because it's like you said,
5:59
if something typically is not working, then they
6:01
move you up to the next tier, you know, eventually
6:03
you ended up with biologics. So now, how did
6:07
you continue to navigate your diagnosis? And,
6:10
you know, how did you get better? So I went to,
6:14
I said to my husband, we had a long discussion
6:17
about what to do next. And I, at that point I
6:21
had started seeing a naturopath and we decided,
6:25
I went into the specialist and I said, I don't
6:29
think what you're offering me is going to suit
6:31
me, having all the steroids and that I was going
6:35
to follow the path of the naturopath. And she
6:38
was a gut wellness naturopath. I followed that
6:42
path for about two years and I got into remission,
6:46
which was amazing. It was a long journey, but
6:50
I did it, which was amazing. Wow. And good for
6:54
you. I mean, typically when we talk about IBD,
6:58
colitis, Crohn's, obviously the word medication
7:01
is one of the first words that pop up, right?
7:03
So I'm curious to know that now. And obviously
7:07
you don't have to reveal all the secrets, but
7:09
I'm just curious to see. What the basics are
7:11
that this gut wellness specialist put you on
7:16
or recommended you do that you can actually go
7:19
from, let's say, you know, prednisone to basically
7:23
no medication and yet being in remission as well?
7:28
Yeah, so it was a lot of trial and error. Beginning
7:32
with, we kind of said, okay, try this. That didn't
7:38
go so well. I ended up with like a bit of a leaky
7:40
gut, which was obviously another illness on top
7:47
of the IBD type thing, because we all know what
7:49
that is. But she actually diagnosed with me having
7:54
SIBO. I don't know if you've heard of SIBO before.
7:57
It's in the small intestine. So we treated...
8:01
the SIBO in my small intestine. And then we went
8:05
on to do some extra, she gave me some extra medications
8:10
that helped with the, which was just a natural
8:14
kind of natural zinc medication to help with
8:17
the gut lining and also a laxative, which helps
8:23
to push everything through. What role did any
8:28
potential adjustments to diet play? as you as
8:32
you navigated this sort of well treatment in
8:35
a sense yeah so I think the diets was probably
8:40
the only thing that held me back a bit because
8:42
I say it took me two years but I think I was
8:46
probably a bit naughty in between that I'd be
8:49
like oh I'm getting a bit better so I'll go eat
8:51
a donut and that was obviously from what the
8:55
gut the gut wellness naturopath was like That
8:58
is really bad, Kylie. You should not eat a donut.
9:01
And I was like, I know, but I was feeling better.
9:03
And then you take a few steps back. So, yeah,
9:07
I'm sure we can all relate. You're like, yes,
9:09
I'm feeling better. And then it's like, no, I
9:12
should have never done that. So natural ways
9:16
of treating this as opposed to, you know, the
9:18
typical medications. Now, this was a two -year
9:22
period. You're in remission. Did you, in a way,
9:28
maybe lose trust in sort of traditional medicine,
9:32
medications, or do you just sort of apply this
9:34
mindset to your colitis? I'm just curious to
9:37
see, like choosing sort of the natural path versus
9:41
typical medications, if this is something that,
9:44
I don't know, you would apply to the rest of
9:46
your life, like the rest of your health as well,
9:48
or if you still sort of stayed level -headed
9:51
as well and said, well, you know, hey, science
9:53
is one thing, so I'll continue to... trust in
9:56
that as well. How do you feel about this now,
9:58
two years later? So I feel like I have lost a
10:03
lot of trust with doctors and medications and
10:06
actually what they know. I feel like they'll
10:09
give you a medication and it's more of a band
10:11
-aid fix. Whereas when I did all the work with
10:14
my naturopath, we did like poo samples and blood
10:18
tests. how much fiber is in your gut and microbiome
10:23
and all these extra bits and pieces, which a
10:26
specialist doesn't do. A specialist is just like,
10:29
take some medication, take it, put an enema in,
10:32
take a suppository and let's see how that goes.
10:36
And I just really wish that more people would
10:39
trust someone that has studied the gut. There's
10:44
a lot to it and a lot more to it than what a
10:47
regular specialist, I think. even like says remission
10:52
is the ultimate end goal anyway right so however
10:56
we get there whatever works it's great and i
10:59
do think that even though a lot of people are
11:03
able to achieve remission with medications i
11:06
think a lot of people who don't achieve remission
11:09
with nutritional medications feel a little bit
11:11
lost so maybe a story like yours can actually
11:14
well be inspiring to those people to at least
11:16
explore the way right because we're not talking
11:18
about this is right this is wrong but it's one
11:21
of those this works for you cases and potentially
11:24
it might work for someone else right so today
11:27
how are you feeling and you say you're in remission
11:30
but you know do you have occasional flare -ups
11:32
are you just completely symptom -free so um about
11:36
it was may i was made redundant from my job before
11:41
that The job that I was in was just stressing
11:44
me out which then I started flaring up quite
11:48
badly. I do feel like stress is a big part of
11:52
colitis. It doesn't cause it but I do feel like
11:55
it definitely is a part of it and so then I decided
12:01
to start doing my online business where I can
12:06
just work from home and start feeling. see how
12:10
I feel about that and whatnot. But today, unfortunately,
12:14
I'm probably at the worst place I've been in
12:17
probably in the last two years, having the major
12:20
flare up. Last week we were away and I wasn't
12:25
able to get the medication that I needed. So
12:28
it's just, yeah, this week's been a tough week,
12:31
but we'll get there. We'll get there. Yeah. Oh,
12:34
absolutely. Yes. So in these periods of flares,
12:39
How do you deal with the symptoms? What are sort
12:44
of your go -to tips and tricks that you use that
12:47
at least put a little bit of ease, you know,
12:50
to the agony and the physical pain that you're
12:52
going through? What helps you feel better as
12:56
you navigate flares? I think just lots of rest
12:58
and lots of sleep. I love peppermint tea. I think
13:03
peppermint tea is amazing and very gut healing.
13:06
But also like... My kids are a lot older now
13:10
and they just realise that sometimes mum just
13:13
needs to rest. Also, the fact that I get to work
13:17
from home is I'm very lucky that I don't have
13:20
to think about, do I have to call in sick tomorrow
13:24
because I'm having an awful time? I can just
13:28
stay home and feel sorry for myself. That's completely
13:33
fine, you know. I mean, when we're flaring, we
13:36
tend to like to sort of isolate ourselves a little
13:39
bit. If we don't have the opportunity to completely
13:41
be by ourselves, right, because we have other
13:43
responsibilities, like, you know, parenthood,
13:45
of course, then we give it our best. But, you
13:48
know, I always say suffering in silence sometimes
13:50
is sort of the best course of action. So despite
13:53
everything you've done to get better, still sometimes,
13:57
like right now, you know, suffering from flares,
14:00
how do you... How do you keep moving on? How
14:03
do you keep the hope alive that, hey, I don't
14:08
want to necessarily want to at one point consider
14:10
going back on, you know, traditional medications
14:12
because it must be sort of a little bit of soul
14:15
crushing, right? To feel good, to choose the
14:19
natural way, but then still get sucked into a
14:21
flare. So how do you deal with that? Yeah. And
14:23
sort of, yeah. Yeah. So I have been in contact
14:28
with my naturopath again and she, for some reason,
14:33
she'll just ground me. She'll put me back on
14:36
the right track and she'll help me to find where
14:40
I need to be again. I know she will. So I just
14:44
love that lady so much. She's just been a life
14:47
changer. Yeah. So then these flares are the one
14:50
that you're experiencing right now. These are
14:52
then temporary. if I understand correctly. So
14:55
you're sort of able to rebound and get better.
15:00
Yeah, and I've started taking all of my supplements
15:05
again, which obviously is helpful as well. Of
15:10
course, of course. Probably just as much as a
15:14
normal person taking medication, but it's less
15:18
draining. Yeah, exactly. So I want to just quickly
15:23
go back in time one more time around the time
15:26
that you were diagnosed and also, you know, on
15:29
the period that you navigated before you achieved
15:32
remission. You were a mother at that point of
15:37
your diagnosis already. How did you navigate
15:40
that part of life while dealing with a disease
15:45
that really sucks the life and energy out of
15:49
you essentially, right? When you first diagnosed.
15:52
Yeah. It's crazy. It's such a blur. Like I was
15:56
thinking back about it all and it's such a blur
15:59
and it's such a mind game as to what actually
16:03
happened at that point. My husband said to me
16:06
the other day that he remembers coming home from
16:09
work and I'd just be curled up on the bed. and
16:12
the kids would just be we've got three kids and
16:14
they'd just be playing nicely which he said he
16:17
didn't get home and they weren't feral so that
16:19
was good but um yeah like I don't even remember
16:23
doing that like I can't even remember being held
16:26
up on the bed so it's such a blur when you diagnosed
16:31
your your kids were they at an age to be able
16:33
to sort of understand what mom is going through
16:36
were they just too young because obviously what
16:39
the way we feel as parents sort of has a very
16:42
strong impact on children, right? They're around,
16:44
they see us, they want to mimic us. What was
16:48
that for you like? My eldest, definitely. She
16:52
can remember. She's got such a good memory of
16:55
when she was little. But my other two kids, they
16:59
can't really remember. Like my youngest was one
17:03
and then I had... My son, he was like two, so
17:07
they were very close together. So yeah, they
17:10
don't really remember. But yeah, my eldest was
17:13
just like, she could remember and she can remember
17:17
me feeling sorry for myself, crying, exhausted,
17:21
couldn't do much. Yeah, it was tough. So coming
17:28
back to today then and reflecting on your colitis
17:31
journey. How has this disease changed you as
17:36
a person, you think? I feel like my kids are
17:39
my number one. Work is number two. And it's so
17:45
sad because these days everyone's such a hustle,
17:48
got to go to work, got to go do this, got to
17:50
go do that. And their kids just grow up so quickly.
17:54
So I'm so grateful that I can be at home with
17:57
my kids, pick them up from school, take them
18:00
wherever they need to go. And then while they're
18:03
at school, I can focus on just resting, which
18:06
is what is important with having this. A lot
18:14
of people out there in the world who are caring
18:16
for somebody with IBD, are living with somebody
18:19
with IBD, who are loving somebody with IBD. don't
18:23
always necessarily know how to approach this.
18:25
So what would your message, your advice be to
18:28
people, you know, friends, family who support
18:31
someone going through colitis or Crohn's? Oh,
18:35
that's a hard one. I feel like I found support
18:39
from one girl in Canada, which has been amazing.
18:42
We've been jumping off each other, explaining
18:45
like we just get it. I don't feel like your family
18:48
at home really understand exactly what. what's
18:52
happening, which is, it's hard, but it's like
18:55
kind of mean to say, I guess, but they don't
18:58
like, they don't see you at home, what you're
19:01
going through day to day. They see the version
19:04
of you pretty much putting, putting yourself
19:07
the fake version, which is a bit sad, isn't it?
19:11
When you're not breaking. Yeah. Yeah. Yeah. Yeah,
19:15
absolutely. It's, it's, we talk about it often
19:19
as an invisible disease, but, yes it's visible
19:22
to the people close to us but they don't understand
19:25
the level of pain you know that that we feel
19:29
inside so i i don't think it's you you said you
19:32
think it's mean to say but i don't think it is
19:34
mean to say it's just that they're they're innocent
19:37
in their ways of not being able to relate physically
19:41
to what you're going through right so and i think
19:43
there's nothing wrong with that so so living
19:46
with colliders for four years achieving remission
19:50
yet still experiencing flares every now and then,
19:53
obviously you have learned quite a lot about
19:56
the disease itself and about managing it in the
19:59
best way that works for you most of the time.
20:02
If you could travel back in time to the beginning,
20:06
when you were diagnosed, when the doctors didn't
20:09
really explain it to you, what you've really
20:12
struggled with, what would you tell that version
20:17
of yourself back then, four years ago? that is
20:20
okay. Like these things happen just to get through
20:24
it. I wish that it got explained to me a lot
20:27
better about what was required. And I do think
20:32
like things like the eating dairy, gluten, all
20:38
those things, it's, it's a flare for your body.
20:41
I believe it, it's not good for you. So yeah,
20:47
I wish from the day one that, Perhaps I didn't
20:52
let it get so bad and I just went and seen the
20:56
gut wellness naturopath and found my healing
21:01
through there. So where you are right now, if
21:04
you look back at how you personally approached
21:06
the management of your disease, do you have any
21:09
regrets? None. No. I would not do anything different.
21:14
I'm so happy with... with what I've achieved.
21:17
Like, I just think getting into remission was
21:19
amazing because I know that there are probably
21:22
people out there that have been diagnosed with
21:25
it for longer and they haven't been able to get
21:29
to that spot. So, yeah. So I'd like to sort of
21:33
end these conversations, obviously, with the
21:35
best possible message of hope. So two quick questions
21:39
before we wrap up is we actually just talked
21:42
about it. There's a lot of people out there in
21:44
the world who may be less fortunate in managing
21:47
disease, may have suffered for a long time. What
21:51
message of hope would you communicate to them?
21:55
It's okay to talk to people. It's okay to go
21:59
see a doctor, get their opinion on it, but really
22:03
listen to what they're saying. And if they're
22:05
not listening to you, then perhaps they're not
22:08
the person. That should be helping you. So really
22:13
listen to them as much as they're listening to
22:15
you. I think that's a huge factor in what I've
22:20
learned over the years because they weren't listening
22:22
to me. They were not listening to me. Just because
22:25
I look young doesn't mean I'm silly. I'm not.
22:29
Self -advocacy is crucial and people should really
22:33
stand up for themselves and stand their ground
22:35
because this is their health that they're talking
22:37
about. So absolutely. So my final question then
22:41
for you is, especially also somebody who has
22:45
attacked colitis in a more natural way, do you
22:50
think that we'll see a cure to IBD in our lifetime?
22:54
I think while the doctors are giving out the
22:57
medications, no, I don't think so. I don't think
23:01
that they actually really help. They just play
23:04
games with your body. But I think that while
23:07
there's people... studying the gut and like gut
23:12
wellness people then yes potentially I'd recommend
23:16
going to see one even the one I've seen is like
23:20
100 % recommend. So a different perspective on
23:26
getting better and treating the disease which
23:28
is obviously quite fascinating to hear and also
23:31
to see that you know you're able to achieve remission
23:34
at least for some time and also get back into
23:37
it kylie thank you so much for taking the time
23:40
i also commend you for having this conversation
23:43
with me while flaring basically so that that
23:47
takes a lot of strength i really do appreciate
23:49
it and um and it shows that you know despite
23:52
being despite suffering you know it's still important
23:55
to talk about ibd to talk about what you're going
23:59
through. So for me, I wish you all the best.
24:02
I really hope that you'll feel better soon. And
24:04
thank you for sharing your story as well. Thank
24:06
you. And I really appreciate you being here.
24:09
That's it for today's episode of Kaleidos Unfiltered.
24:12
I'm Frank Tabering. And if this hit home or hit
24:15
your gut, do us a favor, subscribe to the show
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We'll see you soon for more inspiring stories.
24:28
from the bathroom floor.