February 12, 2025 • 48 mins
Imagine navigating a life filled with complex medical diagnoses while juggling the everyday challenges of parenthood. That's the reality for our guest, Tish, the insightful creator of Luminous Wounds. Her journey with Crohn's disease, endometriosis, and other autoimmune conditions is not just a story of survival but a testament to resilience and advocacy. Tish shares her experiences of battling medical gaslighting and the importance of finding compassionate healthcare providers willing to listen.
The path to motherhood wasn't straightforward for Tish, and she courageously shares her struggles with fertility. Despite the heartbreak of miscarriage and the challenges of pregnancy during a pandemic, Tish now cherishes life as a mother to three, including twins. Her experiences bring to light the emotional and physical trials of fertility issues, alongside a narrative of hope and triumph over adversity with complications like hyperemesis gravidarum.
Yet, through all these trials, Tish emphasizes the significance of advocacy, trusting one's instincts, and the power of sharing stories. Her creation of Luminous Wounds is a beacon for those facing chronic health challenges, encouraging listeners to find humor amidst difficulty and the strength to speak up. Join us as we celebrate Tish’s journey and the impact of her story on the IBD community.
Links:
- Tish's instagram account
- "Life with Crohn's and Endometriosis: An Overlap of Painful Symptoms"- article at Endometriosis Foundation of America
- Link to Mara's episode
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi, I'm Alicia and I'm Robin, and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week we talked to Tish ofthe blog and Instagram account
Luminous Wounds.
Tish lives with Crohn's disease, endometriosis and other
(00:20):
autoimmune conditions.
We talked to her about thejourney that she went through to
get diagnosed with all of theseconditions and the medical
gaslighting that happened alongthe way.
We talked to her about theimportance of finding the right
healthcare provider that listensto you and will work with you
on your diseases.
We talked to her about herpregnancies and parenting and,
finally, we talked to her abouther experience with fecal
microbiota transplant.
(00:41):
Cheers.
Speaker 2 (00:45):
Hi everybody, Welcome to Bound Moments.
This is Robin.
Speaker 1 (00:48):
Hey everyone, this is Alicia.
We are so excited to be joinedby Tish Tish.
Welcome to the show.
Hi, thank you for having me.
We are so, so excited forpeople to get to know you and to
hear your story.
But first, our veryunprofessional question for you
is what are you drinking and?
Speaker 3 (01:05):
to hear your story, but first our very
unprofessional question for youis what are you?
Speaker 1 (01:09):
drinking Very, very exciting water.
Well, and we should tell peoplethat you are living in
Australia, melbourne, australia,so it is an entirely different
day and time for you, correct?
What day and time is it for youright now?
Speaker 3 (01:20):
Yes, I'm living in the future, so I'm Friday
morning for you right now.
Speaker 1 (01:27):
Yes, I'm living in the future, so I'm Friday
morning.
Yes, so fair Friday morning.
Water makes a lot of sense.
It makes a lot of sense, Robin.
What about?
Speaker 2 (01:30):
you.
I am drinking one of our favesTopo Chico lime with mint.
It's just flavored sparklingwater, but it's so refreshing.
I love it so much and you knowwe love a good Topo Chico.
Speaker 1 (01:41):
We love a Topo Chico.
Yes, I am drinking a decaflatte, so I'm sort of pretending
like it's breakfast for me aswell.
Very excited to be drinking.
I think I told him decaf it maynot be and that I guess I'll
find out when I try to go tosleep.
Terrible, terrible.
Well, tish, we are so, soexcited to have you on the show.
Welcome again, cheers.
(02:01):
I forgot, we always say cheers.
Speaker 3 (02:03):
Cheers.
Thank you for having me Cheers.
Speaker 1 (02:05):
Well, again, we're so excited to hear your story.
So next question for you istell us your IBD story.
What brought you into ourcommunity?
Speaker 3 (02:12):
Yes, so I'm an IBD patient.
I have Crohn's disease.
I was diagnosed back in 2015.
However, I've suspected, I'vehad IBD for quite a while, maybe
20 years or more.
My story is a little bit morecomplicated because I do also
have endometriosis and I had itsevil sister, adenomyosis, for
(02:32):
quite a while as well, which atlast has been cured.
I had a hysterectomy this timelast year, so I got rid of one
finally.
So hopefully a little lesscomplicated now, but that does
convolute my journey just alittle bit, because symptoms of
endometriosis and Crohn's canoverlap sometimes.
So that's been a hard part ofmy journey, but that's basically
(02:56):
where it began.
Speaker 2 (02:57):
Okay, you said you were diagnosed in 2015, but you
suspected that you had Crohn'sfor 20 years, but you suspected
that you had Crohn's for 20years.
Speaker 3 (03:05):
Yes, because my symptoms were all very much GI
related.
I also have a cousin who hasulcerative colitis, so I
suspected something was up,bowel related.
Whether we called it IBD orCrohn's, I knew something was
wrong with my gut because I wasfine for a long time and then I
just got hit with certainsymptoms you know, urgency
(03:26):
frequency or lovely jazz that weall know about when I was in
university, again complicated bythe fact that I had very
intense periods.
So I hope that's not too muchinformation for your audience,
but I've got used to sharing alot of intimate details.
But yeah, back in 2006, I hadmigraines, I had very intense
(03:49):
cramping, I had severe periodpain, I had abdominal cramping,
urgency frequency, you name it.
So the doctors were veryconfused.
I kept rocking up to emergencydepartments in severe,
excruciating pain and they justkept dismissing it as irritable
bowel syndrome or at one pointthey were looking at abdominal
(04:11):
migraine and they did go downthat pathway for a long time.
And then, a few years later, Ihad an episode of pancreatitis
which led to them removing mygallbladder and and
unfortunately, because of thatmistake, I ended up with, like a
very rare side effect of thatsurgery, which is called
sphincter body dysfunction.
(04:31):
So now when I'm given painrelief, I get severe chest
crushing pain.
It's like, it's almost like afeeling of a heart attack, and
the first time I had it I didn'tknow what was going on.
It was after that gallbladdersurgery, when they sent me home
with pain relief and I ended upback in the doctor's office and
the nurse said she's not in agood way, doctor, and he said
tell her to get over it.
(04:52):
So you know, that's yeah.
Unfortunately, that's been abig part of my journey is the
misdiagnosis, the medicalgaslighting you know from day
one, and unfortunately it's justbeen a case of learning how to
keep fighting and keepadvocating through all these
(05:12):
missteps and mistakes and livingwith the consequences of those
mistakes as well.
So, yeah, I did.
Finally, in 2015, I again endedup in hospital with a few
flare-ups of pain and anincrease in uptake in symptoms.
It actually happened because Iwas coming off some medication
that I was put on for my jaw.
(05:34):
I have quite severe TMJdysfunction, transmenstrual jaw
dysfunction and so they put meon a muscle relaxant.
When I came off that, becausewe wanted to start a family, I
ended up in ED with pain,abdominal pain and the CT scan
suggested inflammatory boweldisease.
So it just so happened thatbecause I came off that
(05:54):
medication, that medication wasmasking my Crohn's for quite a
few years.
So they've kept me on thatparticular medication.
They don't want me to come offthat, but it's because of that
that, yeah, but I happened tofind out.
I don't think I would have hadit had I not come off that
medication.
Speaker 1 (06:10):
There's a lot.
There's a lot here.
I have a lot of questions.
I mean it's interesting becauseRobin and I were just talking
about this the other day abouthormones, and actually just
spoke to Marla Dubinsky theother day and she runs a
preconception conception clinicfor people living with
inflammatory bowel disease andtalking about hormones and that
kind of thing and just howlittle it's studied about the
interactions of hormones forwomen, especially with
(06:30):
inflammatory bowel disease.
So I am curious, when you didfinally figure out the Crohn's,
have you figured out perhaps,what was what?
Or was it just all so meshedtogether that it's like
difficult for you to be able tosay well, this, I think, was the
endometriosis, this was theCrohn's.
Speaker 3 (06:46):
Yeah, it's like difficult for you to be able to
say well, this, I think, was theendometriosis, this was the
Crohn's.
Yeah, it's like a puzzle thatyou have to try and figure out,
basically because there arehormones that I think it's
prostaglandins that when thosehormones are released it causes
contractions of your bowel.
So when you have your cycle,some women will have more
intense cramping than others,and this wasn't during
necessarily like my period.
(07:07):
This was in the weeks leadingup to.
So deciphering whether that wasendo or Crohn's was tricky and
prior to having the diagnosis ofCrohn's, it was really like
confusing, because and there's alot of misconceptions about
Crohn's and there's a lot ofmisconceptions about
endometriosis too, so figuringout what's's going on can be
very, very confusing.
(07:28):
But basically, for a while Ihad a focus on endo and that was
kind of stealing the spotlight,and I had six laparoscopies,
quite a few back to back everyyear, and each time they went in
they would find endoolesions.
So that would be theexplanation of the pain.
Then, in 2015, there was adifference in the pain and my
(07:52):
Crohn's has always been smallbowel Crohn's disease and mostly
located in the ileal region.
So I have a very specificfeeling of the pain on one side
and I can tell certain symptomsnow separate to the endo and the
endo after 2015, because whatthey did actually is they made
(08:13):
me have a laparoscopy to confirmthat it wasn't endo related.
So, even though they saw onimaging like thickened loops of
bowel, the doctor said you needto go and talk to your
endospecialist and make surethis isn't endo related.
So we didn't.
So we actually went into hisoffice.
We didn't say anything.
We just showed him the scansand showed him the results and
(08:33):
made him make up his mind.
I didn't want to influence thedoctor.
So the doctor said we need todo a lap, which we were trying
to avoid, because withendometriosis you want one
surgery done really well insteadof multiple surgeries done
incorrectly, and you want itdone with an excision specialist
, not someone who's going toburn it off.
So this is an excisionspecialist I went to.
(08:54):
He went in and found noendolesions.
So they concluded then thismust be inflammatory bowel
disease.
It was a shock that they foundno endolesions as well, because
every other lap had foundendolesions.
So they said finally, thetreatment that you've been on
has hopefully been working.
So that went quiet for a littlewhile and then the spotlight
(09:14):
went to Crohn's.
Then I was asked to see a IBDspecialist from my GI.
Within a few minutes the redflags went up with that
specialist because he startedasking me about my childhood and
if I'd been abused as a child.
And he went through all myfamily members and asked how my
relationships were with them andif I had any abuse.
(09:35):
It was very confusing and hesaid he concluded that he didn't
think that this was Crohn's, hethought it was an incidental
finding and that I needed to seea psychiatrist to talk about
the stress from my childhood.
So the worrying factor therewas that I had just started on
Budesonide, my first evertreatment for Crohn's disease,
and it had made me functional.
So I'd gone from bedridden andin pain with all these horrible
(09:58):
symptoms to back to work and myworry was that if this
specialist went and told my GIthis, that they'd remove the
treatment.
But luckily, the moment I gotout of that doctor's office I
got on the phone to my GI and Isaid look, this is what he said.
I don't know why.
And my GI said did you show himyour results?
And I said yes, I hadeverything he told me to give,
(10:18):
right there in front of me.
He didn't want to look at it,but he insisted I see a
psychiatrist and he apologised.
The GI apologised and said I'msorry, I thought I was sending
you to the best.
We'll keep treating you thisway and we'll see how we go.
So I kept taking Budesonide forabout another year and a half
year or two, and I'd have toincrease it when there was, you
(10:38):
know, a flare up, and then,basically, it was time to start
a family, and so we had toreconsider a few things as well.
So, yeah, so it's been aconfusing, confusing journey.
Speaker 1 (10:50):
Oh my gosh, I am so sorry that's that is so
invalidating.
It's so incredibly invalidating.
I'm so sorry.
I give you very high marks fornot punching that person in the
face the moment that came out ofhis mouth, because, yeah,
that's, that's really terrible.
And I'm glad that your doctorresponded.
Your regular, your first GI,responded in the appropriate way
(11:12):
to say that is not okay andcontinue to help you the funny
thing is is that my endo journeyfollowed a very similar path as
well.
Speaker 3 (11:20):
So they found endometriosis in 2007 in a
laparoscopy and she said I don'tthink this is endometriosis.
In 2007 in a laparoscopy.
And she said I don't think thisis endometriosis.
This is stress, and if youdon't quit your job, you won't
feel any better.
So her recommendation was thatI stopped teaching and that that
would cure my endometriosis.
So I didn't get any treatmentfor endo for another two years
(11:41):
after that, and then I found adifferent gynecologist and when
she went in for the second lapfor endo, when I woke up, she
said no, no, no, this isdefinitely endometriosis, you
need treatment.
We're going to start you ontreatment and it's not in your
head, it's definitely in yourpelvis and we're going to fix
this up.
(12:01):
And so both endo and Crohn'swere misdiagnosed was found, and
then I was told no, so yeah,it's been a journey.
Speaker 1 (12:11):
Yes, yeah, I mean, and again like what a thing to
mess with your head, whereyou're like no, no, no, I
finally have an answer.
And then this gets like the ruggets completely pulled out from
under you to be like no, no,it's not actually that thing
twice, not just once, but twice.
That is very, very, veryfrustrating, is not even a valid
enough word for it, but that'sincredibly frustrating for you.
So, talking about starting afamily, I don't know a lot about
(12:32):
endometriosis, but I know ofcourse that does complicate
getting pregnant and stayingpregnant.
So does Crohn's.
So I am curious about yourjourney there.
I'm guessing it took a fairamount of medical intervention
and a lot of talking to a lot ofpeople about it.
Speaker 3 (12:48):
Yeah, so luckily, because the endo was being I
guess I say luckily, but a funny, I guess, coincidence of fate
in it being misdiagnosed is thatI finally did get onto the
right track.
And so, in seeing anendospecialist, they were
actually a fertility specialistas well, and so they were very
fast to ask are you wanting tostart a family?
(13:11):
And so, without even basicallymeaning to, they did all the
testing and everything to makesure I didn't need any further
assistance.
They found out I wasn'tovulating naturally because I
had a high AMH level and thatindicated that I haven't been
ovulating correctly.
So they started me on somemedication to help me ovulate.
(13:32):
I did get pregnant quitequickly.
Unfortunately, my firstpregnancy did end in a
miscarriage, which was quitedevastating because you think
that the hurdle is gettingpregnant and then, once you're
pregnant, you think, yes, you'vedone it, you don't need to
worry anymore.
And I didn't realize how commonmiscarriage is.
So one in four is the number,and so I kept blaming myself
(13:55):
that I'd done something wrong orthat this was because I've been
told for a long time, since Iwas 19, that I probably wouldn't
be able to have a child.
Based on all my symptoms andmisdiagnoses, I was misdiagnosed
with polycystic ovariansyndrome as well.
So they told me that based onthat, I wouldn't have children.
So that, yeah, that was ringing, felt like it was ringing true.
Then my specialist said aftermy miscarriage that around six
(14:19):
weeks post my miscarriage, thatthe new research is indicating
that if you try again after thatamount of time, that you're
more likely to carry to term.
So I, even though it felt likeI wasn't ready, I desperately
wanted a child and I knew Iwanted to be a mum and to try
again.
So, you know, went withwhatever the odds were and I got
(14:40):
pregnant again and was the moststressful pregnancy because I
was scared every day.
You know I didn't want to tellanybody till she graduated, so I
just because I just the fear,you know, um, and yeah, so I was
able to carry her to term.
She, when she came out, shewasn't breathing as well, so the
scariest few minutes of ourlives, but.
(15:03):
But they did get her breathingand luckily she's earthside now
and she's turning seven thisyear.
And then when, funnily enough,during the pandemic, they told
me if you want to have a siblingfor your little one, you know,
now's your chance.
Your adenomyosis looks like it'sactually getting better, which
never happens, according to them.
So the size of my uterus hadgone from being, you know, quite
(15:25):
large and it was very obvious.
My adenomyosis was diagnosedafter I had my daughter, which
they had suspected, but you,unless you can see it on scan,
will actually get a biopsy.
It's very hard to diagnose.
So it was very obvious, though,on scan, and so they said back
in 2020 now's a chance.
So we went through the processof starting the ovulation
(15:46):
medication again, but I gotsomething called ovarian
hyperstimulation, which is not afun side effect.
I ended up in hospital.
I was in an excruciating amountof pain.
Basically, the ovary isobviously overstimulated and you
feel very, very unwell, andthis is just before the pandemic
(16:07):
started.
So they switched me to adifferent type of ovulation
induction medication, and a sideeffect of ovulation induction
medication even though I wastold I would never have children
is twins.
So in May of 2020, I found outI was pregnant with twins.
So, yeah, 2020, I found out Iwas pregnant with twins.
(16:29):
So, yeah, I'm surprised.
Everybody, including I'm stillsurprised.
They've turned four now and I'mstill in shock.
So I went from fearful that Iwould never be able to have a
baby, to being able to beblessed with three beautiful
kids and they are so again.
That pregnancy then became themost stressful and probably the
most difficult thing I've everdone in my entire life because
(16:50):
of all the complications.
All manner of complicationsarose from that pregnancy.
Twin pregnancies are very highrisk, and so I was alone when I
found out that I was pregnantwith twins, because what
happened is I had hyperemesisgravidarum.
It's like severe morningsickness.
It's 24-7 morning sickness.
(17:10):
You can't eat, you can't drink,I couldn't even brush my hair
without vomiting.
So it was intense.
That happened within three weeksof finding out I was pregnant
because I was always being.
I had so many blood tests veryearly on with my specialist.
So when they told me I waspregnant, they said your HCG is
quite high, so we just need tomake sure this isn't, you know,
a multiple pregnancy.
And I said you said that withmy daughter, so I'm not worried.
(17:32):
And then I ended up in hospitalbecause of the hyperemesis and
I was alone with the pandemicand they made me do a ultrasound
.
They said let's just check.
We need to check because yourHCG is actually skyrocketing and
it indicates twins.
So I was like, okay, you can doit, but I doubt it.
And they did the scan.
I was alone for the scan and Isaw the two.
(17:54):
They said they won't seeheartbeats or hear heartbeats,
but we'll see the two sacs.
And lo and behold because Iknow a little bit now, quite a
lot, being on this journey I sawthe two sacks and the swearing
just did not stop and thesonographer actually got really
worried.
They were like are you okay?
I was like no, I said where arethey going to go?
(18:19):
Where, how, what?
Like?
My worry was where is it going?
Like?
How are two babies gonna fit?
Because I'm very little.
One pregnancy was I had pelvicinstability with one pregnancy,
so I was.
I had to walk back to myhospital bed and, um, my nurse
saw me and she's like are youokay, honey?
You look like you've seen aghost.
And I just said twins and she'slike yay, and I said no, no, no
(18:43):
, no, no.
So, yeah, so twins.
So surprised everyone.
But yes, it also led to somecomplications, so I can bring it
back to IBD, if you like it.
Um, based on my body being putthrough quite a rough run, the
(19:04):
following year, I actuallycontracted a very intense and
very horrible infectious disease, like a gastric infection
called C diff, and it's not afun one.
Normally, though, the symptomscause like extreme diarrhea,
like 20 times a day, andvomiting, and all that kind of
stuff.
I didn't have any of thosesymptoms, though, which I'm very
(19:24):
grateful for.
That's the one good thing thathappened is it didn't present
normally, but because it didn'tpresent normally, I had to again
check off all the lists.
Is this endopain?
Is this because I suddenly gotabdominal distension that made
me look like I was pregnant, andI was just crippled with severe
systemic nerve pain like aching, and I was bedridden for weeks
(19:48):
and we thought Crohn's flare.
We thought endoflareadenomyosis, but we got
everything checked off.
I went through everything.
I got all the scans tested.
They're like no, your adeno isunder control, your endo is
under control.
No, the Crohn's is undercontrol.
But then, when I asked for thestool test, that's how they
found the C Diff, and C Diff canbe a very stubborn infection.
(20:08):
I first contracted it in Bali in2017 after I'd had my
miscarriage.
My family took me away to tryand get away after the
miscarriage because I was insuch a bad way, so they took me
on a holiday, and then I gotBali belly, which ended up being
cdif.
And if you get cdif once,unfortunately it can stay
dormant in your system, and soafter the intense pregnancy and
(20:34):
in being in hospital basicallyall of 2020, with hyperemesis
and all the other colorectalcomplications that came with
having twins, somehow Icontracted cdif again.
Or the antibiotics they put meon after having the twins for
some random infection I got mayhave triggered it again and it
just wouldn't go away.
They tried antibiotics for therest of the year this was May of
(20:54):
2021.
And for the rest of the year itjust kept being a cycle of
antibiotics.
It'd go away.
It stopped the antibiotics, theC diff would come back, and then
, unfortunately, towards the endof that year, my calprotectin
started to rise, and so thatreally alerted my GI and he said
we need to get you in for acolonoscopy.
But because I don't know if youknew, but Melbourne had some of
(21:16):
the harshest lockdownrestrictions in the world during
the pandemic, and so in Januaryof 2022, we actually had a code
brown in hospitals, where theywere only taking really urgent
cases, so any electives werecancelled.
So my colonoscopy got cancelledand about two weeks later I
(21:37):
landed in hospital because the Cdiff just went insane and my
Crohn's blared because of the Cdiff.
Tragically, my GI decided toretire at that time and with
that came a new GI who decidedto make my life miserable and
questioned whether I'd ever hadCrohn's yet again.
(21:58):
And yeah, I know, you thoughtit was only twice.
It happened three times.
Speaker 2 (22:05):
I have to stop you for one second, like what in the
world?
What in the world?
First of all, as patients, wegaslight ourselves right.
I mean I do, especially whenI'm having symptoms and all my
labs look beautiful and I'm likemy body is a liar.
But then I'm like, well, am Imaking this up?
I literally say that to myself.
(22:27):
Am I making this up when I knowthat I'm not?
And now you have had not one,not two, but this is the third
doctor who has said this to you.
It is infuriating.
I'm so, so sorry.
Oh my gosh.
Speaker 3 (22:43):
Some doctors forget is that these are individual
cases.
We're looking at human beingswho have very different bodies
that work very differently, witha whole host of other external
influences, and so they don'tindividualize the cases, they
just some of them, not all ofthem.
Some of them just thinkCalprotecta needs to be this
high for it to be of an issue,or, you know, inflammation needs
(23:05):
to be seen on scan for there tobe this high for it to be of an
issue, or, you know,inflammation needs to be seen on
scan for there to be Crohn'swhere we all, as you're saying,
you know, robin, you can haveyour labs come back all clear,
but you can be so symptomatic.
So finding a doctor who listensto you as a patient and looks
at the patient and says how'sthe the patient has been the key
(23:25):
for me.
And so in February, when I metthis doctor, all the red flags
went up because at first he was,you know, charming me with.
You know, I have an IBD nurseand I think that the problem is
that your Crohn's has never beentreated properly and I was like
who is this?
You know angel, who I've met,who wants to take my IBD more
seriously?
Wow.
(23:47):
But then, within less than 48hours, he says I think this is
all incidental, I need toactually educate you on the
difference between IBD and IBS.
And I said I know thedifference very well.
And then he said you know, Ihave a patient next door whose
calprotectin is in the thousands.
And I said so what I said?
If you talk to my GI the onewho retired he would tell you
(24:10):
that I'm very little and thesethings affect me very
differently.
So three milligrams ofbudesonide is very effective for
me, whereas for a lot of otherpatients that might not be
enough.
So he said I don't think so.
And I said if you could startme on budesonide, just so that I
can function I've just hadnewborn twins, please do
(24:31):
something.
And I felt like I was beggingto be taking taken seriously.
And he said well, look, we'lltrial you on it like a like,
let's see.
And within less than two weeks Iwent from being bedridden and
in hospital to functional againand able to move house.
We happened to be moving houseat that time, so I was able to
do that.
But again the red flags weregoing off and he was the one
(24:53):
that said you know, this C diffwe really need to take seriously
.
He got an infectious diseasespecialist to come and see me
and they put me on insane levelsof vancomycin, which is one of
the harshest antibiotics andstrongest antibiotics, and I was
on like 2000 milligrams a dayfor months and then the doctors
just started disappearing.
(25:13):
I just couldn't get hold ofthem, I couldn't talk to them
and I'd run out of scripts andso I'd be without medication and
that risks the C diff comingback whilst I was waiting for
this procedure that he wasconvinced I needed.
And the procedure was somethingthat at first, when I heard it,
I was so scared and reallydidn't want to do it.
It's called an FMT fecalmicrobial transplant, and just
(25:36):
the idea of that was putting allsorts of fears into me.
And I asked could a familymember be a donor?
And he laughed and said oh, no,no, no, no, not at all, whereas
my previous GI had said youcould just get a family member
to donate.
So I was being told differentthings.
It was all very confusing.
So I decided look, I think thisis kind of like what happened
(25:56):
with my endo.
I think it's time I find my ownspecialist.
So I did some research.
A friend of mine who hadCrohn's disease, raved about her
IBD specialist.
He's a professor at one of thetop universities here.
So I made a call and they said,look, we can't get you in till
June.
And this was in February.
And I was like, look, I'll wait.
You know, put me on the waitinglist, put me on a cancellation
(26:18):
list, please.
And then in May, when I got toMay this you know, gaslighting
GI that I had been given he mademe.
He made a phone call and saidyou know, I think it's time I
pass you on to one of mycolleagues.
And I was like, why?
And he said you know, there'snothing more I can do for you,
tish.
And I said, but what about theFMT that you've been going on
and on and on about and tellingme that you were organizing?
(26:40):
And he's like I don't do them?
I was like how do you go fromorganizing it to suddenly, six
months later, not doing them?
And having had convinced me thatthis is my only hope, because C
diff, if left untreated, can belife-threatening.
That's the other thing I shouldmention.
It can cause horrificconsequences.
So you can get something calledtoxic megacolon.
And when you see your bowelinflating like the distension of
(27:02):
my stomach looking pregnant,you get really worried that at
any time this is going to switchto life threatening and you
land in hospital and you'll needparts of your bowel removed,
and you know so.
I knew enough to know that thisis a very serious infection to
have, especially when it'srefractory and won't go away.
It's very hard to treat.
So when he was chopping andchanging his mind, it was talk
(27:25):
about medical gaslighting.
I just felt like I was goinginsane because one day he was
all about I need this and thenhe was like no, I don't do this.
It was very, very confusing.
So I'm glad I made the call tofind my own specialist.
It just so happened that I hadto wait just a few more weeks to
see him.
But the other thing is thisdoctor left me.
(27:46):
That phone call was the lasttime I spoke to him, with no
exit strategy, for the C diffDidn't leave me with any scripts
for vancomycin or any otherantibiotic.
I was just left alone.
I never knew what would happen.
I didn't know if I'd end up inhospital dead because of this
infection.
So I was terrified, and tryingto look after newborn twins at
(28:09):
the same time.
So it was shocking.
Thankfully I went in to see thisnew doctor but I was terrified.
I was so scared that he woulddo the same thing palm me off.
But thankfully he agreed thatthe vancomycin dose was at
stupidly high levels and that'sthe first thing that had to go.
So he helped me wean off that.
He said budesonide can make Cdiff worse.
(28:31):
So he wanted me off thebudesonide and he made a plan.
So the first plan was toobviously treat the C diff and
he said he's able to do the FMTand that a family member could
donate.
And so now it's a long runningjoke in my family because my
husband saved my life, becausehe was my donor.
So you know there's a lot ofshame around this kind of
(28:54):
procedure and at the time it'staken me till now to really talk
about it.
I have my little blog, luminousWounds, but I've never actually
spoken about the FMT becauseit's taken me a very long time
to process it and to try anddissolve that shame that's
attached to it.
You know, because it wasn't afun thing to do.
You know none of this is.
But I do want to kind of breakthe shame and stigma that's
(29:17):
attached to these kinds ofdiseases, just IBD in general,
endo all of this.
You know talking about periods,talking about going to the
toilet and bowel habits and youknow frequency and urgency and
all that kind of stuff.
There's just so much stigmaattached and I just want it to
go away so that we're not leftfeeling so alone and so scared.
Because I was terrified.
But yes, having my husband bethe donor was the thing that
(29:39):
helped me get through.
I ended up having a colonoscopy.
It's a procedure where theytake the sample and basically,
while you are under and they dothe colonoscopy, they're able to
basically fill the bowel withthat sample and the theory is
that that gut flora canannihilate the C diff.
And he warned me that for somepeople it works and for some
(30:00):
people they need a fewprocedures.
So I was very scared butthankfully, touch wood wood, it
worked, yeah.
And then he went on to treatthe Crohn's because while I was
under he said with thecolonoscopy, it's very obvious
that you do have Crohn's disease.
And again it was that sigh of Ido, because the other doctor
said I didn't.
And you know, he said it wasincidental.
(30:24):
He's like no, no, no, youdefinitely have Crohn's and
we're going to do a pill cambecause he wanted to find out
the extent of the disease.
And back in 2015, I don't knowif I mentioned it, but I had
three colonoscopies.
I remember waking up from eachone with my GI at the time
saying, sorry, we can't get farenough to get to the point on
(30:44):
scan, so we need to repeat thescope next week.
And then I did it the next weekand then I woke up again and he
said I'm really sorry, but I'mgoing to send you to another
hospital to have somethingcalled a double balloon
enterography where theyhopefully can get far enough.
And they did it.
But again when I woke up, theysaid we couldn't find the source
.
So it's always been a case ofwe think this exists, we just
(31:07):
can't find it.
So when this new doctor said wewant to do a pill cam, that's
what I'd been waiting for for solong because I knew it existed
and I remember seeing it on thenotes of my previous doctor.
It said pill cam question mark.
And I always wondered why don'tyou just do it?
But I felt felt like if Ipushed, they'd think I'm, you
know, crazy or they already.
(31:28):
I felt like they alreadythought I was crazy.
So I never.
I kind of felt like I had tostay a little bit quiet and not
push too hard, whereas this newdoctor, he took it upon himself
and said no, you need the pillcam.
And the pill cam found extensivesmall bowel cramps.
And that moment I broke down inthe car after the appointment
(31:48):
because they just make you feellike you're insane.
So to be validated and to findout that I had extensive, not
just cranes, it was all throughthe bowel now and I wasn't
insane, I was right.
And he said we're going to makea plan to treat you properly.
You need to be on long-termtreatment, not just Budesonide.
So he tried methotrexate.
(32:09):
Unfortunately that didn't workfor me.
I got every side effectpossible because of that
gallbladder removal.
I have lots of issuespost-gallbladder removal.
So they have to be very carefulwith the medication they use.
Then they tried it's calledHumira, but is the name for it,
but the actual chemical name Ithink is Adalimab, I think is
(32:31):
how you pronounce it.
So they tried Humira and thething was it was kind of like
what comes first, the chicken orthe egg, because the exact same
time I'd had the fecaltransplant as starting treatment
for Crohn's.
So I felt really good becauseof the faecal transplant.
But it turns out the Humirawasn't working.
But I didn't know.
I felt good.
I felt so much better so wethought it was working.
(32:54):
So they kept me on it for it'sbeen almost two years.
But unfortunately last year inAugust my symptoms started going
berserk again and I ended uphaving to say to the doctor look
, I think my Crohn's is startingto present itself again.
Can you check?
And he's willing.
You know I'm always scared nowwhen I approach my doctors.
(33:17):
But he really listened and hesaid no, no, let's do another
pill cam and let's just changeyou.
He said I'm not even going towait for the pill cam, let's
change you.
He said I'm not even going towait for the pill cam, let's
change you.
And thankfully he did, becausethe pill cam showed that my
Crohn's has actually got worse.
So the pill cam was in Septemberlast year and it was
devastating to see that Humirahadn't done anything.
But I'm glad I spoke up andthen they've started me on
(33:41):
Stelara now.
So I had my first loading dosein September and I'm about to
have my second maintenance dosenext week.
So touch wood, it seems to havealready been helping.
Again, it's just my story isjust basically one of a person
who has constantly had to raiseher voice and just keep fighting
the system that's a little bitbroken and, yeah, just not give
(34:04):
up in terms of trusting pardonthe pun trusting your gut and
making sure you don't give upand find a doctor who will
listen because they're out there.
So that's basically been mystory with IBD to date.
Speaker 2 (34:18):
I want to just emphasize something you said
about not giving up, because weknow our bodies best and while
it is frustrating and sometimesdemoralizing for medical
professionals to tell you thatyour labs are in normal, it took
the benefit of age for me toreply to that.
Normal for who?
(34:39):
Exactly?
So I mean now, whenever anybodysays, oh, it's a normal range,
I'm like great.
Normal for who?
Not normal for me.
Normal for the 45 to55-year-old men.
50 years ago, when these normalranges were established, Normal
for who?
Speaker 3 (34:55):
Exactly?
Who was the standard testedagainst?
You know, because research ismostly done on men, you know,
that's right.
It's not done on women.
So how can they look us in theeye and say your labs are fine,
you know?
Speaker 2 (35:09):
Yeah, alicia.
Please correct me if I'm wrong,but, tish, I think you are the
first person on this show thathas actually had an FMT, yay, no
, who else had it Mara, don'tyou?
Speaker 1 (35:20):
remember Mara's dramatic story about like having
this super cute nurse.
So we had lovely young Maracame on and she did FMT and they
didn't warn her that afterwardsyour body may expel things very
quickly and this very likefrankly hot nurse, male nurse,
came in and she was like hellofriend and he kept being like
(35:41):
you're feeling okay, you should,you should, you sure?
Speaker 2 (35:45):
oh, my gosh.
Speaker 1 (35:46):
I remember now yeah all of a sudden she was like and
she said, all of a sudden sherealized why he kept asking that
way, because all of a suddenshe's like I almost pooped all
over the floor okay, because shehad to get all the tubes off
and she like ran to the bathroomand she's like there's like she
was so mortifiedly embarrassedit was a very, very funny story.
She's over it now.
But same thing where, like shelike nobody warned me that this
(36:09):
was going to be this way.
I'm grateful I didn't have thatreaction.
Oh Well, and she was so upsetafterwards because nobody warned
her that this may happen, andso she thought she had just
pooped out all of the progressthat she just made.
How did I?
Speaker 2 (36:24):
not remember this story.
Speaker 1 (36:25):
Oh my gosh, oh my God , I can't believe you don't
remember this story.
It was so funny, like she was.
She was laughing too, but Imean cause she's told it in a
very entertaining format, butlike, yeah, she was very upset.
Afterwards, like she said, Ijust started crying on the
toilet because I'm like, oh myGod, what have I done?
You know kind of thing.
Speaker 3 (36:41):
I was warned.
I was told if you have to tryand lie down the rest of the day
so that you can not go to thetoilet, if you can avoid it, and
if you do go to the toilet, youneed to take some gastrostop or
lamotil or whatever it is totry and stop it immediately,
because you don't want thatbeing flushed away, because
that's like the gold stuff thatyou've been good stuff.
Yeah, but my husband did dosomething that was quite funny.
(37:05):
So I had to.
My procedure was like 6 a 6amand I stayed at my parents
because I had to do like a fullcolonoscopy prep and so, because
I have little children, Ididn't want to be up all night
and wake them up.
So I went to my parents' housethat's like my home away from
home to do the prep and then inthe morning we had to come and
pick up the donation that mylovely husband had made and he
(37:25):
decided to make us a laugh andnot just put it in a regular
container like the hospital hadgiven us.
He put it in the container andthen he put that container in a
chocolate box.
So I rocked up to the hospitalwith this big chocolate box and
my doctor looked so confusedwhen I walked into the thing and
he's like no, no, no, no, thisis my husband's sick, warped
(37:48):
sense of humour.
And so he took it and helaughed.
And I heard him walk into thelike little you know, the prep
area of the day surgery, and thenurse said, doctor, you brought
us some chocolates.
And I was just like oh, no.
And he's like no, ladies, thisis not what you think.
And I'm just like great, that'smy husband.
Speaker 1 (38:08):
Oh, that's so cute.
I love that.
I do love it too.
Speaker 3 (38:15):
If you don't laugh, you'll definitely cry with this
kind of stuff you got to findthe funny, 100%.
Speaker 1 (38:19):
Well, I will.
I will add a link to Mara'sepisode in case somebody would
like a slightly alternativestory to their experience of a
fecal matter transplant.
Sorry, fecal microbiotatransplant.
I got that wrong once.
Abdominal migraine I'm curious.
Why did they think it wasabdominal migraine?
Is it like?
Were there specific symptomsthat you were having that
(38:40):
they're like?
Oh, we think that's this.
Speaker 3 (38:41):
Just because I had migraine, I was having migraines
from probably hormonal based orcyclical based migraines.
They hormonal-based orcyclical-based migraines, they
were connecting that.
And because I had bowelsymptoms, they just joined the
two together and said this mustbe abdominal migraine, whereas I
have someone I know, someonewho has abdominal migraine
(39:02):
presents very differently.
So they feel a little bit of aheadache before their symptoms
set in and then maybe a day ortwo later they'll get like
crippling nausea and reflux andabdo pain that doesn't respond
to Zofrin and any antiemetics ora lot of treatment and they're
bedridden for a few days.
So that is more abdominalmigraine than what I was getting
(39:26):
, which was severe migrainesthat you know.
I was photosensitive and wouldhave me lying down for a long
time, but the migraine wouldn'tbe at the same time as the bowel
symptoms.
That's the thing that made methink this isn't right.
And then I started tracking mysymptoms and I started noticing
cyclical patterns.
So a week prior to my periodI'd be getting the urgency and
(39:49):
the frequency.
It wasn't just then, but that'swhen there would be a big
uptick in symptoms and the firstGI that ended up retiring he's
the one that listened to me whenI was in ED because they called
him just because GI symptoms.
So this has to be GI, right?
I said to him I really thinkthis has something to do with my
cycle and they foundendometriosis two years ago but
(40:12):
they never treated it.
And he said look, I really thinkyou need to see another
gynecologist.
So then again, finding someonewho someone else recommends is
also a very good idea, someonewho someone else trusts, as
opposed to being with a doctorthat the hospital just gives you
because they're not necessarilythe best.
So this new gyno she said, look, we need to do a lap.
(40:37):
And then they found the endoand said no, this is all.
This explains a lot of yoursymptoms.
And then she was still willingto discuss my case with my GI.
So when it became we don'tthink this is endo anymore she
called the GI and they wouldtalk very regularly.
So they became like a team andso that was really important.
(40:57):
But, yeah, abdominal migrainefor me, I knew that that wasn't
what it was.
Speaker 1 (41:03):
No, does not sound like it, that's for sure.
At what point in here did youstart Luminous Wounds, and what
was sort of the impetus for youto get started with that?
Speaker 3 (41:11):
So it's been like more than 20 years now.
I was in university when Ifirst started getting symptoms
and this was before social media, before anything like that, and
I couldn't find anyone oranything to help me go through
the beginning of the journey,which is one of the hardest
parts of it, especially whenyou're being thrown from
specialist to specialist andhospital to hospital and being
(41:33):
told all the different things.
It's so confusing.
And so the last time I was inhospital when I met the new GI
after my regular doctor retired,when he started questioning the
diagnosis again and this wasthe third time that happened
just said I can't.
You know, I think my storycould help some people and I had
(41:54):
done a campaign with anAustralian non-profit for endo
and that was quite successfuland a lot of people resonated
with my story there.
Because the other thing is,every time I go into ED with
this amount of pain and thischest crushing pain where I
can't take a lot of normalmedication, they presume I'm a
drug seeker.
Because I say I can't have thisdrug.
(42:15):
I can't have this drug, justgive me this.
If you go into ED saying justgive me this drug, and you're a
regular visitor of ED, theyimmediately think drug seeker.
So they withhold treatment andthey treat you horribly.
So all of these experiencesthey withhold treatment and they
treat you horribly.
So all of these experiences.
I just decided, hopefully, Icould be of help, and so by
(42:36):
sharing my story with thatcampaign, I did end up helping a
lot of people.
And then I realized, you know,hopefully I could do the same
with IBD as well, and just innavigating the medical system
it's called Luminous Woundsbecause I have quite a few
different, you know, chronichealth issues and I didn't want
to focus particularly on onething.
A lot of people have told me ifyou change your name to make it
more specific about endo or IBD, you'll get more followers.
(42:59):
So it's a very little blog.
I don't have a bazillionfollowers, but I have quality
followers.
I will say that.
But I didn't want to change itbecause my whole thing has been
that, yes, these horrible thingshave happened to me, but at the
same time it makes me so muchmore grateful for the little
joys in my life and the big joysI think I've recently.
(43:21):
I talk a lot about my blog,glimmers.
You know it's the opposite of atrigger and it's something that
makes you feel joy and makes youfeel calm and, you know,
centered, and so I try and focuson all of that.
So one of my favorite quotes byRumi is the wound is where the
light enters, and that'sbasically like summing up my
experience as a spoonie, and soyou know someone with chronic,
(43:44):
so many chronic health issues.
So I decided to call itLuminous Wounds because, yes,
there are many wounds, but Ihave three beautiful kids, I
have a beautiful family and I amalways trying to find the joy
wherever possible.
And I think, if I can teachother people to do the same
thing and not give up no matterwhat they tell you, to keep
(44:07):
trusting that voice and to speakeven if your voice shakes
because mine has been shaking alot lately, but I still speak up
when I know something's wrongand I trust that.
So advocacy now is part of myjourney.
So I just thought starting alittle blog, see what would
happen, see who I can help.
Speaker 1 (44:24):
I love that.
What a great quote too.
No, I think that's reallybeautiful and I think it's good
that it's not disease specifictoo, because I think it is going
to be more impactful for thepeople like you that it's not
just one thing, it's multiplethings and unfortunately, with
our community, there are a lotof people that it's not just
their IBD, it's something elseon top of it, Even if it's just
the mental health struggle ofliving with a chronic illness
(44:46):
and you know that, gut brainconnection being a comorbid
thing that goes along with it.
Speaker 3 (44:51):
Exactly, and you know I've had complications from
twin pregnancy, from pregnancythat I've had to go in and have,
you know, pelvic floor Botoxall of last year to try and
reverse all the complicationsfrom my twin pregnancy.
So there's been so manydifferent things.
So I talk about all sorts ofthings fertility, ibd, endo, I
(45:12):
don't know, tmj, nerve pain,pain, life in general.
So yeah, I try and touch oneverything and hopefully can
help some people that way.
Speaker 2 (45:21):
There's no way that you're not helping people, I'm
sure of it.
Even though you said you have asmall quality following.
We have a small following aswell, a small quality following,
but we have kept you talkingfor longer than an hour now.
It's now time for me to ask youour last question, and that is
what is the one thing that youwant the IBD community to know?
Speaker 3 (45:43):
I would say for the IBD community and for chronic
illness warriors in general, totrust your gut and find a
specialist in your disease.
So not a general doctor, not adoctor that can necessarily look
at a whole bunch of stuff, butthat is focused in on the
disease that you havespecifically, because for me
(46:03):
that has been the difference,the key difference.
Making sure that they have thatexpertise is really key.
If I had known that 20 yearsago, I think my life might have
looked a little bit different.
I can't cry over spilt milk,though, so it is what it is.
But now I tell anyone who asksyou know I have these symptoms.
The first thing I say isendospecialist, ibd specialist,
(46:26):
not GI, not gyne.
Very, very specific.
Second is that you've got tospeak up.
You know, trust your instinctand they might be doctors, but
they're not gods.
We shouldn't be afraid of them.
There are wonderful doctors outthere, so keep going until you
find one.
Speaker 1 (46:42):
That's really great advice.
I mean, I totally understandyou're like I can't cry over
spilled milk, but it's hard toalso say I should have done this
when you were being told itwasn't what they said.
You know you kept being gaslitinto what it actually was.
So it's hard to find the rightspecialist when you don't really
know what's going on or youcan't Exactly, you don't have
the correct information to findthe best person to really treat
(47:03):
you is so helpful and you knowhaving these social media
communities is beautiful.
Speaker 3 (47:10):
You know we're here to help each other and so if you
recognize your symptoms oryou're hearing someone's story,
you recognize your story bysharing stories on podcasts like
these and in.
You know, online communitiesask the question.
You know don't be afraid to geton there and search for the
answers yourself.
You know we're made to feellike don't Google anything.
(47:30):
Yes, I agree, because there's alot of misinformation.
You do have to be careful whatyou believe.
You know.
If you hear someone telling youthey can cure your IBD, run a
mile Because there's no cure.
We know that.
So we do have to be carefulwhat we believe and listen to
online.
But trying to navigate that asbest you can and following
(47:51):
people that have references andtrusted sources is, I think,
just really invaluable very wildride with you, and so I can't
imagine being you.
Speaker 1 (48:11):
To be honest, this is where I joke that I really wish
we used the video, becauseRobin and I definitely were
reacting to your story quietlywhile you were talking, yes, but
thank you, thank you so muchfor sharing it.
We know that's not always easy,and so we really, really
appreciate you doing it, and Iknow sharing your blog is
incredibly impactful for ourcommunity, so thank you for
doing that as well.
Speaker 3 (48:27):
Thank you for giving me the opportunity to come on
and have a chat and to share mystory.
I really appreciate it.
Speaker 1 (48:32):
We love it.
We love it.
Thank you everybody else forlistening as well.
So cheers, guys, cheers.
Speaker 2 (48:37):
Cheers everybody.
Speaker 3 (48:38):
Hi, this is Tish, and if you enjoyed this episode,
please rate, review, subscribeand share it with your
Hi, I'm Alicia and I'm Robin, and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week we talked to Tish ofthe blog and Instagram account
Luminous Wounds.
Tish lives with Crohn's disease, endometriosis and other
(00:20):
autoimmune conditions.
We talked to her about thejourney that she went through to
get diagnosed with all of theseconditions and the medical
gaslighting that happened alongthe way.
We talked to her about theimportance of finding the right
healthcare provider that listensto you and will work with you
on your diseases.
We talked to her about herpregnancies and parenting and,
finally, we talked to her abouther experience with fecal
microbiota transplant.
(00:41):
Cheers.
Speaker 2 (00:45):
Hi everybody, Welcome to Bound Moments.
This is Robin.
Speaker 1 (00:48):
Hey everyone, this is Alicia.
We are so excited to be joinedby Tish Tish.
Welcome to the show.
Hi, thank you for having me.
We are so, so excited forpeople to get to know you and to
hear your story.
But first, our veryunprofessional question for you
is what are you drinking and?
Speaker 3 (01:05):
to hear your story, but first our very
unprofessional question for youis what are you?
Speaker 1 (01:09):
drinking Very, very exciting water.
Well, and we should tell peoplethat you are living in
Australia, melbourne, australia,so it is an entirely different
day and time for you, correct?
What day and time is it for youright now?
Speaker 3 (01:20):
Yes, I'm living in the future, so I'm Friday
morning for you right now.
Speaker 1 (01:27):
Yes, I'm living in the future, so I'm Friday
morning.
Yes, so fair Friday morning.
Water makes a lot of sense.
It makes a lot of sense, Robin.
What about?
Speaker 2 (01:30):
you.
I am drinking one of our favesTopo Chico lime with mint.
It's just flavored sparklingwater, but it's so refreshing.
I love it so much and you knowwe love a good Topo Chico.
Speaker 1 (01:41):
We love a Topo Chico.
Yes, I am drinking a decaflatte, so I'm sort of pretending
like it's breakfast for me aswell.
Very excited to be drinking.
I think I told him decaf it maynot be and that I guess I'll
find out when I try to go tosleep.
Terrible, terrible.
Well, tish, we are so, soexcited to have you on the show.
Welcome again, cheers.
(02:01):
I forgot, we always say cheers.
Speaker 3 (02:03):
Cheers.
Thank you for having me Cheers.
Speaker 1 (02:05):
Well, again, we're so excited to hear your story.
So next question for you istell us your IBD story.
What brought you into ourcommunity?
Speaker 3 (02:12):
Yes, so I'm an IBD patient.
I have Crohn's disease.
I was diagnosed back in 2015.
However, I've suspected, I'vehad IBD for quite a while, maybe
20 years or more.
My story is a little bit morecomplicated because I do also
have endometriosis and I had itsevil sister, adenomyosis, for
(02:32):
quite a while as well, which atlast has been cured.
I had a hysterectomy this timelast year, so I got rid of one
finally.
So hopefully a little lesscomplicated now, but that does
convolute my journey just alittle bit, because symptoms of
endometriosis and Crohn's canoverlap sometimes.
So that's been a hard part ofmy journey, but that's basically
(02:56):
where it began.
Speaker 2 (02:57):
Okay, you said you were diagnosed in 2015, but you
suspected that you had Crohn'sfor 20 years, but you suspected
that you had Crohn's for 20years.
Speaker 3 (03:05):
Yes, because my symptoms were all very much GI
related.
I also have a cousin who hasulcerative colitis, so I
suspected something was up,bowel related.
Whether we called it IBD orCrohn's, I knew something was
wrong with my gut because I wasfine for a long time and then I
just got hit with certainsymptoms you know, urgency
(03:26):
frequency or lovely jazz that weall know about when I was in
university, again complicated bythe fact that I had very
intense periods.
So I hope that's not too muchinformation for your audience,
but I've got used to sharing alot of intimate details.
But yeah, back in 2006, I hadmigraines, I had very intense
(03:49):
cramping, I had severe periodpain, I had abdominal cramping,
urgency frequency, you name it.
So the doctors were veryconfused.
I kept rocking up to emergencydepartments in severe,
excruciating pain and they justkept dismissing it as irritable
bowel syndrome or at one pointthey were looking at abdominal
(04:11):
migraine and they did go downthat pathway for a long time.
And then, a few years later, Ihad an episode of pancreatitis
which led to them removing mygallbladder and and
unfortunately, because of thatmistake, I ended up with, like a
very rare side effect of thatsurgery, which is called
sphincter body dysfunction.
(04:31):
So now when I'm given painrelief, I get severe chest
crushing pain.
It's like, it's almost like afeeling of a heart attack, and
the first time I had it I didn'tknow what was going on.
It was after that gallbladdersurgery, when they sent me home
with pain relief and I ended upback in the doctor's office and
the nurse said she's not in agood way, doctor, and he said
tell her to get over it.
(04:52):
So you know, that's yeah.
Unfortunately, that's been abig part of my journey is the
misdiagnosis, the medicalgaslighting you know from day
one, and unfortunately it's justbeen a case of learning how to
keep fighting and keepadvocating through all these
(05:12):
missteps and mistakes and livingwith the consequences of those
mistakes as well.
So, yeah, I did.
Finally, in 2015, I again endedup in hospital with a few
flare-ups of pain and anincrease in uptake in symptoms.
It actually happened because Iwas coming off some medication
that I was put on for my jaw.
(05:34):
I have quite severe TMJdysfunction, transmenstrual jaw
dysfunction and so they put meon a muscle relaxant.
When I came off that, becausewe wanted to start a family, I
ended up in ED with pain,abdominal pain and the CT scan
suggested inflammatory boweldisease.
So it just so happened thatbecause I came off that
(05:54):
medication, that medication wasmasking my Crohn's for quite a
few years.
So they've kept me on thatparticular medication.
They don't want me to come offthat, but it's because of that
that, yeah, but I happened tofind out.
I don't think I would have hadit had I not come off that
medication.
Speaker 1 (06:10):
There's a lot.
There's a lot here.
I have a lot of questions.
I mean it's interesting becauseRobin and I were just talking
about this the other day abouthormones, and actually just
spoke to Marla Dubinsky theother day and she runs a
preconception conception clinicfor people living with
inflammatory bowel disease andtalking about hormones and that
kind of thing and just howlittle it's studied about the
interactions of hormones forwomen, especially with
(06:30):
inflammatory bowel disease.
So I am curious, when you didfinally figure out the Crohn's,
have you figured out perhaps,what was what?
Or was it just all so meshedtogether that it's like
difficult for you to be able tosay well, this, I think, was the
endometriosis, this was theCrohn's.
Speaker 3 (06:46):
Yeah, it's like difficult for you to be able to
say well, this, I think, was theendometriosis, this was the
Crohn's.
Yeah, it's like a puzzle thatyou have to try and figure out,
basically because there arehormones that I think it's
prostaglandins that when thosehormones are released it causes
contractions of your bowel.
So when you have your cycle,some women will have more
intense cramping than others,and this wasn't during
necessarily like my period.
(07:07):
This was in the weeks leadingup to.
So deciphering whether that wasendo or Crohn's was tricky and
prior to having the diagnosis ofCrohn's, it was really like
confusing, because and there's alot of misconceptions about
Crohn's and there's a lot ofmisconceptions about
endometriosis too, so figuringout what's's going on can be
very, very confusing.
(07:28):
But basically, for a while Ihad a focus on endo and that was
kind of stealing the spotlight,and I had six laparoscopies,
quite a few back to back everyyear, and each time they went in
they would find endoolesions.
So that would be theexplanation of the pain.
Then, in 2015, there was adifference in the pain and my
(07:52):
Crohn's has always been smallbowel Crohn's disease and mostly
located in the ileal region.
So I have a very specificfeeling of the pain on one side
and I can tell certain symptomsnow separate to the endo and the
endo after 2015, because whatthey did actually is they made
(08:13):
me have a laparoscopy to confirmthat it wasn't endo related.
So, even though they saw onimaging like thickened loops of
bowel, the doctor said you needto go and talk to your
endospecialist and make surethis isn't endo related.
So we didn't.
So we actually went into hisoffice.
We didn't say anything.
We just showed him the scansand showed him the results and
(08:33):
made him make up his mind.
I didn't want to influence thedoctor.
So the doctor said we need todo a lap, which we were trying
to avoid, because withendometriosis you want one
surgery done really well insteadof multiple surgeries done
incorrectly, and you want itdone with an excision specialist
, not someone who's going toburn it off.
So this is an excisionspecialist I went to.
(08:54):
He went in and found noendolesions.
So they concluded then thismust be inflammatory bowel
disease.
It was a shock that they foundno endolesions as well, because
every other lap had foundendolesions.
So they said finally, thetreatment that you've been on
has hopefully been working.
So that went quiet for a littlewhile and then the spotlight
(09:14):
went to Crohn's.
Then I was asked to see a IBDspecialist from my GI.
Within a few minutes the redflags went up with that
specialist because he startedasking me about my childhood and
if I'd been abused as a child.
And he went through all myfamily members and asked how my
relationships were with them andif I had any abuse.
(09:35):
It was very confusing and hesaid he concluded that he didn't
think that this was Crohn's, hethought it was an incidental
finding and that I needed to seea psychiatrist to talk about
the stress from my childhood.
So the worrying factor therewas that I had just started on
Budesonide, my first evertreatment for Crohn's disease,
and it had made me functional.
So I'd gone from bedridden andin pain with all these horrible
(09:58):
symptoms to back to work and myworry was that if this
specialist went and told my GIthis, that they'd remove the
treatment.
But luckily, the moment I gotout of that doctor's office I
got on the phone to my GI and Isaid look, this is what he said.
I don't know why.
And my GI said did you show himyour results?
And I said yes, I hadeverything he told me to give,
(10:18):
right there in front of me.
He didn't want to look at it,but he insisted I see a
psychiatrist and he apologised.
The GI apologised and said I'msorry, I thought I was sending
you to the best.
We'll keep treating you thisway and we'll see how we go.
So I kept taking Budesonide forabout another year and a half
year or two, and I'd have toincrease it when there was, you
(10:38):
know, a flare up, and then,basically, it was time to start
a family, and so we had toreconsider a few things as well.
So, yeah, so it's been aconfusing, confusing journey.
Speaker 1 (10:50):
Oh my gosh, I am so sorry that's that is so
invalidating.
It's so incredibly invalidating.
I'm so sorry.
I give you very high marks fornot punching that person in the
face the moment that came out ofhis mouth, because, yeah,
that's, that's really terrible.
And I'm glad that your doctorresponded.
Your regular, your first GI,responded in the appropriate way
(11:12):
to say that is not okay andcontinue to help you the funny
thing is is that my endo journeyfollowed a very similar path as
well.
Speaker 3 (11:20):
So they found endometriosis in 2007 in a
laparoscopy and she said I don'tthink this is endometriosis.
In 2007 in a laparoscopy.
And she said I don't think thisis endometriosis.
This is stress, and if youdon't quit your job, you won't
feel any better.
So her recommendation was thatI stopped teaching and that that
would cure my endometriosis.
So I didn't get any treatmentfor endo for another two years
(11:41):
after that, and then I found adifferent gynecologist and when
she went in for the second lapfor endo, when I woke up, she
said no, no, no, this isdefinitely endometriosis, you
need treatment.
We're going to start you ontreatment and it's not in your
head, it's definitely in yourpelvis and we're going to fix
this up.
(12:01):
And so both endo and Crohn'swere misdiagnosed was found, and
then I was told no, so yeah,it's been a journey.
Speaker 1 (12:11):
Yes, yeah, I mean, and again like what a thing to
mess with your head, whereyou're like no, no, no, I
finally have an answer.
And then this gets like the ruggets completely pulled out from
under you to be like no, no,it's not actually that thing
twice, not just once, but twice.
That is very, very, veryfrustrating, is not even a valid
enough word for it, but that'sincredibly frustrating for you.
So, talking about starting afamily, I don't know a lot about
(12:32):
endometriosis, but I know ofcourse that does complicate
getting pregnant and stayingpregnant.
So does Crohn's.
So I am curious about yourjourney there.
I'm guessing it took a fairamount of medical intervention
and a lot of talking to a lot ofpeople about it.
Speaker 3 (12:48):
Yeah, so luckily, because the endo was being I
guess I say luckily, but a funny, I guess, coincidence of fate
in it being misdiagnosed is thatI finally did get onto the
right track.
And so, in seeing anendospecialist, they were
actually a fertility specialistas well, and so they were very
fast to ask are you wanting tostart a family?
(13:11):
And so, without even basicallymeaning to, they did all the
testing and everything to makesure I didn't need any further
assistance.
They found out I wasn'tovulating naturally because I
had a high AMH level and thatindicated that I haven't been
ovulating correctly.
So they started me on somemedication to help me ovulate.
(13:32):
I did get pregnant quitequickly.
Unfortunately, my firstpregnancy did end in a
miscarriage, which was quitedevastating because you think
that the hurdle is gettingpregnant and then, once you're
pregnant, you think, yes, you'vedone it, you don't need to
worry anymore.
And I didn't realize how commonmiscarriage is.
So one in four is the number,and so I kept blaming myself
(13:55):
that I'd done something wrong orthat this was because I've been
told for a long time, since Iwas 19, that I probably wouldn't
be able to have a child.
Based on all my symptoms andmisdiagnoses, I was misdiagnosed
with polycystic ovariansyndrome as well.
So they told me that based onthat, I wouldn't have children.
So that, yeah, that was ringing, felt like it was ringing true.
Then my specialist said aftermy miscarriage that around six
(14:19):
weeks post my miscarriage, thatthe new research is indicating
that if you try again after thatamount of time, that you're
more likely to carry to term.
So I, even though it felt likeI wasn't ready, I desperately
wanted a child and I knew Iwanted to be a mum and to try
again.
So, you know, went withwhatever the odds were and I got
(14:40):
pregnant again and was the moststressful pregnancy because I
was scared every day.
You know I didn't want to tellanybody till she graduated, so I
just because I just the fear,you know, um, and yeah, so I was
able to carry her to term.
She, when she came out, shewasn't breathing as well, so the
scariest few minutes of ourlives, but.
(15:03):
But they did get her breathingand luckily she's earthside now
and she's turning seven thisyear.
And then when, funnily enough,during the pandemic, they told
me if you want to have a siblingfor your little one, you know,
now's your chance.
Your adenomyosis looks like it'sactually getting better, which
never happens, according to them.
So the size of my uterus hadgone from being, you know, quite
(15:25):
large and it was very obvious.
My adenomyosis was diagnosedafter I had my daughter, which
they had suspected, but you,unless you can see it on scan,
will actually get a biopsy.
It's very hard to diagnose.
So it was very obvious, though,on scan, and so they said back
in 2020 now's a chance.
So we went through the processof starting the ovulation
(15:46):
medication again, but I gotsomething called ovarian
hyperstimulation, which is not afun side effect.
I ended up in hospital.
I was in an excruciating amountof pain.
Basically, the ovary isobviously overstimulated and you
feel very, very unwell, andthis is just before the pandemic
(16:07):
started.
So they switched me to adifferent type of ovulation
induction medication, and a sideeffect of ovulation induction
medication even though I wastold I would never have children
is twins.
So in May of 2020, I found outI was pregnant with twins.
So, yeah, 2020, I found out Iwas pregnant with twins.
(16:29):
So, yeah, I'm surprised.
Everybody, including I'm stillsurprised.
They've turned four now and I'mstill in shock.
So I went from fearful that Iwould never be able to have a
baby, to being able to beblessed with three beautiful
kids and they are so again.
That pregnancy then became themost stressful and probably the
most difficult thing I've everdone in my entire life because
(16:50):
of all the complications.
All manner of complicationsarose from that pregnancy.
Twin pregnancies are very highrisk, and so I was alone when I
found out that I was pregnantwith twins, because what
happened is I had hyperemesisgravidarum.
It's like severe morningsickness.
It's 24-7 morning sickness.
(17:10):
You can't eat, you can't drink,I couldn't even brush my hair
without vomiting.
So it was intense.
That happened within three weeksof finding out I was pregnant
because I was always being.
I had so many blood tests veryearly on with my specialist.
So when they told me I waspregnant, they said your HCG is
quite high, so we just need tomake sure this isn't, you know,
a multiple pregnancy.
And I said you said that withmy daughter, so I'm not worried.
(17:32):
And then I ended up in hospitalbecause of the hyperemesis and
I was alone with the pandemicand they made me do a ultrasound
.
They said let's just check.
We need to check because yourHCG is actually skyrocketing and
it indicates twins.
So I was like, okay, you can doit, but I doubt it.
And they did the scan.
I was alone for the scan and Isaw the two.
(17:54):
They said they won't seeheartbeats or hear heartbeats,
but we'll see the two sacs.
And lo and behold because Iknow a little bit now, quite a
lot, being on this journey I sawthe two sacks and the swearing
just did not stop and thesonographer actually got really
worried.
They were like are you okay?
I was like no, I said where arethey going to go?
(18:19):
Where, how, what?
Like?
My worry was where is it going?
Like?
How are two babies gonna fit?
Because I'm very little.
One pregnancy was I had pelvicinstability with one pregnancy,
so I was.
I had to walk back to myhospital bed and, um, my nurse
saw me and she's like are youokay, honey?
You look like you've seen aghost.
And I just said twins and she'slike yay, and I said no, no, no
(18:43):
, no, no.
So, yeah, so twins.
So surprised everyone.
But yes, it also led to somecomplications, so I can bring it
back to IBD, if you like it.
Um, based on my body being putthrough quite a rough run, the
(19:04):
following year, I actuallycontracted a very intense and
very horrible infectious disease, like a gastric infection
called C diff, and it's not afun one.
Normally, though, the symptomscause like extreme diarrhea,
like 20 times a day, andvomiting, and all that kind of
stuff.
I didn't have any of thosesymptoms, though, which I'm very
(19:24):
grateful for.
That's the one good thing thathappened is it didn't present
normally, but because it didn'tpresent normally, I had to again
check off all the lists.
Is this endopain?
Is this because I suddenly gotabdominal distension that made
me look like I was pregnant, andI was just crippled with severe
systemic nerve pain like aching, and I was bedridden for weeks
(19:48):
and we thought Crohn's flare.
We thought endoflareadenomyosis, but we got
everything checked off.
I went through everything.
I got all the scans tested.
They're like no, your adeno isunder control, your endo is
under control.
No, the Crohn's is undercontrol.
But then, when I asked for thestool test, that's how they
found the C Diff, and C Diff canbe a very stubborn infection.
(20:08):
I first contracted it in Bali in2017 after I'd had my
miscarriage.
My family took me away to tryand get away after the
miscarriage because I was insuch a bad way, so they took me
on a holiday, and then I gotBali belly, which ended up being
cdif.
And if you get cdif once,unfortunately it can stay
dormant in your system, and soafter the intense pregnancy and
(20:34):
in being in hospital basicallyall of 2020, with hyperemesis
and all the other colorectalcomplications that came with
having twins, somehow Icontracted cdif again.
Or the antibiotics they put meon after having the twins for
some random infection I got mayhave triggered it again and it
just wouldn't go away.
They tried antibiotics for therest of the year this was May of
(20:54):
2021.
And for the rest of the year itjust kept being a cycle of
antibiotics.
It'd go away.
It stopped the antibiotics, theC diff would come back, and then
, unfortunately, towards the endof that year, my calprotectin
started to rise, and so thatreally alerted my GI and he said
we need to get you in for acolonoscopy.
But because I don't know if youknew, but Melbourne had some of
(21:16):
the harshest lockdownrestrictions in the world during
the pandemic, and so in Januaryof 2022, we actually had a code
brown in hospitals, where theywere only taking really urgent
cases, so any electives werecancelled.
So my colonoscopy got cancelledand about two weeks later I
(21:37):
landed in hospital because the Cdiff just went insane and my
Crohn's blared because of the Cdiff.
Tragically, my GI decided toretire at that time and with
that came a new GI who decidedto make my life miserable and
questioned whether I'd ever hadCrohn's yet again.
(21:58):
And yeah, I know, you thoughtit was only twice.
It happened three times.
Speaker 2 (22:05):
I have to stop you for one second, like what in the
world?
What in the world?
First of all, as patients, wegaslight ourselves right.
I mean I do, especially whenI'm having symptoms and all my
labs look beautiful and I'm likemy body is a liar.
But then I'm like, well, am Imaking this up?
I literally say that to myself.
(22:27):
Am I making this up when I knowthat I'm not?
And now you have had not one,not two, but this is the third
doctor who has said this to you.
It is infuriating.
I'm so, so sorry.
Oh my gosh.
Speaker 3 (22:43):
Some doctors forget is that these are individual
cases.
We're looking at human beingswho have very different bodies
that work very differently, witha whole host of other external
influences, and so they don'tindividualize the cases, they
just some of them, not all ofthem.
Some of them just thinkCalprotecta needs to be this
high for it to be of an issue,or, you know, inflammation needs
(23:05):
to be seen on scan for there tobe this high for it to be of an
issue, or, you know,inflammation needs to be seen on
scan for there to be Crohn'swhere we all, as you're saying,
you know, robin, you can haveyour labs come back all clear,
but you can be so symptomatic.
So finding a doctor who listensto you as a patient and looks
at the patient and says how'sthe the patient has been the key
(23:25):
for me.
And so in February, when I metthis doctor, all the red flags
went up because at first he was,you know, charming me with.
You know, I have an IBD nurseand I think that the problem is
that your Crohn's has never beentreated properly and I was like
who is this?
You know angel, who I've met,who wants to take my IBD more
seriously?
Wow.
(23:47):
But then, within less than 48hours, he says I think this is
all incidental, I need toactually educate you on the
difference between IBD and IBS.
And I said I know thedifference very well.
And then he said you know, Ihave a patient next door whose
calprotectin is in the thousands.
And I said so what I said?
If you talk to my GI the onewho retired he would tell you
(24:10):
that I'm very little and thesethings affect me very
differently.
So three milligrams ofbudesonide is very effective for
me, whereas for a lot of otherpatients that might not be
enough.
So he said I don't think so.
And I said if you could startme on budesonide, just so that I
can function I've just hadnewborn twins, please do
(24:31):
something.
And I felt like I was beggingto be taking taken seriously.
And he said well, look, we'lltrial you on it like a like,
let's see.
And within less than two weeks Iwent from being bedridden and
in hospital to functional againand able to move house.
We happened to be moving houseat that time, so I was able to
do that.
But again the red flags weregoing off and he was the one
(24:53):
that said you know, this C diffwe really need to take seriously
.
He got an infectious diseasespecialist to come and see me
and they put me on insane levelsof vancomycin, which is one of
the harshest antibiotics andstrongest antibiotics, and I was
on like 2000 milligrams a dayfor months and then the doctors
just started disappearing.
(25:13):
I just couldn't get hold ofthem, I couldn't talk to them
and I'd run out of scripts andso I'd be without medication and
that risks the C diff comingback whilst I was waiting for
this procedure that he wasconvinced I needed.
And the procedure was somethingthat at first, when I heard it,
I was so scared and reallydidn't want to do it.
It's called an FMT fecalmicrobial transplant, and just
(25:36):
the idea of that was putting allsorts of fears into me.
And I asked could a familymember be a donor?
And he laughed and said oh, no,no, no, no, not at all, whereas
my previous GI had said youcould just get a family member
to donate.
So I was being told differentthings.
It was all very confusing.
So I decided look, I think thisis kind of like what happened
(25:56):
with my endo.
I think it's time I find my ownspecialist.
So I did some research.
A friend of mine who hadCrohn's disease, raved about her
IBD specialist.
He's a professor at one of thetop universities here.
So I made a call and they said,look, we can't get you in till
June.
And this was in February.
And I was like, look, I'll wait.
You know, put me on the waitinglist, put me on a cancellation
(26:18):
list, please.
And then in May, when I got toMay this you know, gaslighting
GI that I had been given he mademe.
He made a phone call and saidyou know, I think it's time I
pass you on to one of mycolleagues.
And I was like, why?
And he said you know, there'snothing more I can do for you,
tish.
And I said, but what about theFMT that you've been going on
and on and on about and tellingme that you were organizing?
(26:40):
And he's like I don't do them?
I was like how do you go fromorganizing it to suddenly, six
months later, not doing them?
And having had convinced me thatthis is my only hope, because C
diff, if left untreated, can belife-threatening.
That's the other thing I shouldmention.
It can cause horrificconsequences.
So you can get something calledtoxic megacolon.
And when you see your bowelinflating like the distension of
(27:02):
my stomach looking pregnant,you get really worried that at
any time this is going to switchto life threatening and you
land in hospital and you'll needparts of your bowel removed,
and you know so.
I knew enough to know that thisis a very serious infection to
have, especially when it'srefractory and won't go away.
It's very hard to treat.
So when he was chopping andchanging his mind, it was talk
(27:25):
about medical gaslighting.
I just felt like I was goinginsane because one day he was
all about I need this and thenhe was like no, I don't do this.
It was very, very confusing.
So I'm glad I made the call tofind my own specialist.
It just so happened that I hadto wait just a few more weeks to
see him.
But the other thing is thisdoctor left me.
(27:46):
That phone call was the lasttime I spoke to him, with no
exit strategy, for the C diffDidn't leave me with any scripts
for vancomycin or any otherantibiotic.
I was just left alone.
I never knew what would happen.
I didn't know if I'd end up inhospital dead because of this
infection.
So I was terrified, and tryingto look after newborn twins at
(28:09):
the same time.
So it was shocking.
Thankfully I went in to see thisnew doctor but I was terrified.
I was so scared that he woulddo the same thing palm me off.
But thankfully he agreed thatthe vancomycin dose was at
stupidly high levels and that'sthe first thing that had to go.
So he helped me wean off that.
He said budesonide can make Cdiff worse.
(28:31):
So he wanted me off thebudesonide and he made a plan.
So the first plan was toobviously treat the C diff and
he said he's able to do the FMTand that a family member could
donate.
And so now it's a long runningjoke in my family because my
husband saved my life, becausehe was my donor.
So you know there's a lot ofshame around this kind of
(28:54):
procedure and at the time it'staken me till now to really talk
about it.
I have my little blog, luminousWounds, but I've never actually
spoken about the FMT becauseit's taken me a very long time
to process it and to try anddissolve that shame that's
attached to it.
You know, because it wasn't afun thing to do.
You know none of this is.
But I do want to kind of breakthe shame and stigma that's
(29:17):
attached to these kinds ofdiseases, just IBD in general,
endo all of this.
You know talking about periods,talking about going to the
toilet and bowel habits and youknow frequency and urgency and
all that kind of stuff.
There's just so much stigmaattached and I just want it to
go away so that we're not leftfeeling so alone and so scared.
Because I was terrified.
But yes, having my husband bethe donor was the thing that
(29:39):
helped me get through.
I ended up having a colonoscopy.
It's a procedure where theytake the sample and basically,
while you are under and they dothe colonoscopy, they're able to
basically fill the bowel withthat sample and the theory is
that that gut flora canannihilate the C diff.
And he warned me that for somepeople it works and for some
(30:00):
people they need a fewprocedures.
So I was very scared butthankfully, touch wood wood, it
worked, yeah.
And then he went on to treatthe Crohn's because while I was
under he said with thecolonoscopy, it's very obvious
that you do have Crohn's disease.
And again it was that sigh of Ido, because the other doctor
said I didn't.
And you know, he said it wasincidental.
(30:24):
He's like no, no, no, youdefinitely have Crohn's and
we're going to do a pill cambecause he wanted to find out
the extent of the disease.
And back in 2015, I don't knowif I mentioned it, but I had
three colonoscopies.
I remember waking up from eachone with my GI at the time
saying, sorry, we can't get farenough to get to the point on
(30:44):
scan, so we need to repeat thescope next week.
And then I did it the next weekand then I woke up again and he
said I'm really sorry, but I'mgoing to send you to another
hospital to have somethingcalled a double balloon
enterography where theyhopefully can get far enough.
And they did it.
But again when I woke up, theysaid we couldn't find the source
.
So it's always been a case ofwe think this exists, we just
(31:07):
can't find it.
So when this new doctor said wewant to do a pill cam, that's
what I'd been waiting for for solong because I knew it existed
and I remember seeing it on thenotes of my previous doctor.
It said pill cam question mark.
And I always wondered why don'tyou just do it?
But I felt felt like if Ipushed, they'd think I'm, you
know, crazy or they already.
(31:28):
I felt like they alreadythought I was crazy.
So I never.
I kind of felt like I had tostay a little bit quiet and not
push too hard, whereas this newdoctor, he took it upon himself
and said no, you need the pillcam.
And the pill cam found extensivesmall bowel cramps.
And that moment I broke down inthe car after the appointment
(31:48):
because they just make you feellike you're insane.
So to be validated and to findout that I had extensive, not
just cranes, it was all throughthe bowel now and I wasn't
insane, I was right.
And he said we're going to makea plan to treat you properly.
You need to be on long-termtreatment, not just Budesonide.
So he tried methotrexate.
(32:09):
Unfortunately that didn't workfor me.
I got every side effectpossible because of that
gallbladder removal.
I have lots of issuespost-gallbladder removal.
So they have to be very carefulwith the medication they use.
Then they tried it's calledHumira, but is the name for it,
but the actual chemical name Ithink is Adalimab, I think is
(32:31):
how you pronounce it.
So they tried Humira and thething was it was kind of like
what comes first, the chicken orthe egg, because the exact same
time I'd had the fecaltransplant as starting treatment
for Crohn's.
So I felt really good becauseof the faecal transplant.
But it turns out the Humirawasn't working.
But I didn't know.
I felt good.
I felt so much better so wethought it was working.
(32:54):
So they kept me on it for it'sbeen almost two years.
But unfortunately last year inAugust my symptoms started going
berserk again and I ended uphaving to say to the doctor look
, I think my Crohn's is startingto present itself again.
Can you check?
And he's willing.
You know I'm always scared nowwhen I approach my doctors.
(33:17):
But he really listened and hesaid no, no, let's do another
pill cam and let's just changeyou.
He said I'm not even going towait for the pill cam, let's
change you.
He said I'm not even going towait for the pill cam, let's
change you.
And thankfully he did, becausethe pill cam showed that my
Crohn's has actually got worse.
So the pill cam was in Septemberlast year and it was
devastating to see that Humirahadn't done anything.
But I'm glad I spoke up andthen they've started me on
(33:41):
Stelara now.
So I had my first loading dosein September and I'm about to
have my second maintenance dosenext week.
So touch wood, it seems to havealready been helping.
Again, it's just my story isjust basically one of a person
who has constantly had to raiseher voice and just keep fighting
the system that's a little bitbroken and, yeah, just not give
(34:04):
up in terms of trusting pardonthe pun trusting your gut and
making sure you don't give upand find a doctor who will
listen because they're out there.
So that's basically been mystory with IBD to date.
Speaker 2 (34:18):
I want to just emphasize something you said
about not giving up, because weknow our bodies best and while
it is frustrating and sometimesdemoralizing for medical
professionals to tell you thatyour labs are in normal, it took
the benefit of age for me toreply to that.
Normal for who?
(34:39):
Exactly?
So I mean now, whenever anybodysays, oh, it's a normal range,
I'm like great.
Normal for who?
Not normal for me.
Normal for the 45 to55-year-old men.
50 years ago, when these normalranges were established, Normal
for who?
Speaker 3 (34:55):
Exactly?
Who was the standard testedagainst?
You know, because research ismostly done on men, you know,
that's right.
It's not done on women.
So how can they look us in theeye and say your labs are fine,
you know?
Speaker 2 (35:09):
Yeah, alicia.
Please correct me if I'm wrong,but, tish, I think you are the
first person on this show thathas actually had an FMT, yay, no
, who else had it Mara, don'tyou?
Speaker 1 (35:20):
remember Mara's dramatic story about like having
this super cute nurse.
So we had lovely young Maracame on and she did FMT and they
didn't warn her that afterwardsyour body may expel things very
quickly and this very likefrankly hot nurse, male nurse,
came in and she was like hellofriend and he kept being like
(35:41):
you're feeling okay, you should,you should, you sure?
Speaker 2 (35:45):
oh, my gosh.
Speaker 1 (35:46):
I remember now yeah all of a sudden she was like and
she said, all of a sudden sherealized why he kept asking that
way, because all of a suddenshe's like I almost pooped all
over the floor okay, because shehad to get all the tubes off
and she like ran to the bathroomand she's like there's like she
was so mortifiedly embarrassedit was a very, very funny story.
She's over it now.
But same thing where, like shelike nobody warned me that this
(36:09):
was going to be this way.
I'm grateful I didn't have thatreaction.
Oh Well, and she was so upsetafterwards because nobody warned
her that this may happen, andso she thought she had just
pooped out all of the progressthat she just made.
How did I?
Speaker 2 (36:24):
not remember this story.
Speaker 1 (36:25):
Oh my gosh, oh my God , I can't believe you don't
remember this story.
It was so funny, like she was.
She was laughing too, but Imean cause she's told it in a
very entertaining format, butlike, yeah, she was very upset.
Afterwards, like she said, Ijust started crying on the
toilet because I'm like, oh myGod, what have I done?
You know kind of thing.
Speaker 3 (36:41):
I was warned.
I was told if you have to tryand lie down the rest of the day
so that you can not go to thetoilet, if you can avoid it, and
if you do go to the toilet, youneed to take some gastrostop or
lamotil or whatever it is totry and stop it immediately,
because you don't want thatbeing flushed away, because
that's like the gold stuff thatyou've been good stuff.
Yeah, but my husband did dosomething that was quite funny.
(37:05):
So I had to.
My procedure was like 6 a 6amand I stayed at my parents
because I had to do like a fullcolonoscopy prep and so, because
I have little children, Ididn't want to be up all night
and wake them up.
So I went to my parents' housethat's like my home away from
home to do the prep and then inthe morning we had to come and
pick up the donation that mylovely husband had made and he
(37:25):
decided to make us a laugh andnot just put it in a regular
container like the hospital hadgiven us.
He put it in the container andthen he put that container in a
chocolate box.
So I rocked up to the hospitalwith this big chocolate box and
my doctor looked so confusedwhen I walked into the thing and
he's like no, no, no, no, thisis my husband's sick, warped
(37:48):
sense of humour.
And so he took it and helaughed.
And I heard him walk into thelike little you know, the prep
area of the day surgery, and thenurse said, doctor, you brought
us some chocolates.
And I was just like oh, no.
And he's like no, ladies, thisis not what you think.
And I'm just like great, that'smy husband.
Speaker 1 (38:08):
Oh, that's so cute.
I love that.
I do love it too.
Speaker 3 (38:15):
If you don't laugh, you'll definitely cry with this
kind of stuff you got to findthe funny, 100%.
Speaker 1 (38:19):
Well, I will.
I will add a link to Mara'sepisode in case somebody would
like a slightly alternativestory to their experience of a
fecal matter transplant.
Sorry, fecal microbiotatransplant.
I got that wrong once.
Abdominal migraine I'm curious.
Why did they think it wasabdominal migraine?
Is it like?
Were there specific symptomsthat you were having that
(38:40):
they're like?
Oh, we think that's this.
Speaker 3 (38:41):
Just because I had migraine, I was having migraines
from probably hormonal based orcyclical based migraines.
They hormonal-based orcyclical-based migraines, they
were connecting that.
And because I had bowelsymptoms, they just joined the
two together and said this mustbe abdominal migraine, whereas I
have someone I know, someonewho has abdominal migraine
(39:02):
presents very differently.
So they feel a little bit of aheadache before their symptoms
set in and then maybe a day ortwo later they'll get like
crippling nausea and reflux andabdo pain that doesn't respond
to Zofrin and any antiemetics ora lot of treatment and they're
bedridden for a few days.
So that is more abdominalmigraine than what I was getting
(39:26):
, which was severe migrainesthat you know.
I was photosensitive and wouldhave me lying down for a long
time, but the migraine wouldn'tbe at the same time as the bowel
symptoms.
That's the thing that made methink this isn't right.
And then I started tracking mysymptoms and I started noticing
cyclical patterns.
So a week prior to my periodI'd be getting the urgency and
(39:49):
the frequency.
It wasn't just then, but that'swhen there would be a big
uptick in symptoms and the firstGI that ended up retiring he's
the one that listened to me whenI was in ED because they called
him just because GI symptoms.
So this has to be GI, right?
I said to him I really thinkthis has something to do with my
cycle and they foundendometriosis two years ago but
(40:12):
they never treated it.
And he said look, I really thinkyou need to see another
gynecologist.
So then again, finding someonewho someone else recommends is
also a very good idea, someonewho someone else trusts, as
opposed to being with a doctorthat the hospital just gives you
because they're not necessarilythe best.
So this new gyno she said, look, we need to do a lap.
(40:37):
And then they found the endoand said no, this is all.
This explains a lot of yoursymptoms.
And then she was still willingto discuss my case with my GI.
So when it became we don'tthink this is endo anymore she
called the GI and they wouldtalk very regularly.
So they became like a team andso that was really important.
(40:57):
But, yeah, abdominal migrainefor me, I knew that that wasn't
what it was.
Speaker 1 (41:03):
No, does not sound like it, that's for sure.
At what point in here did youstart Luminous Wounds, and what
was sort of the impetus for youto get started with that?
Speaker 3 (41:11):
So it's been like more than 20 years now.
I was in university when Ifirst started getting symptoms
and this was before social media, before anything like that, and
I couldn't find anyone oranything to help me go through
the beginning of the journey,which is one of the hardest
parts of it, especially whenyou're being thrown from
specialist to specialist andhospital to hospital and being
(41:33):
told all the different things.
It's so confusing.
And so the last time I was inhospital when I met the new GI
after my regular doctor retired,when he started questioning the
diagnosis again and this wasthe third time that happened
just said I can't.
You know, I think my storycould help some people and I had
(41:54):
done a campaign with anAustralian non-profit for endo
and that was quite successfuland a lot of people resonated
with my story there.
Because the other thing is,every time I go into ED with
this amount of pain and thischest crushing pain where I
can't take a lot of normalmedication, they presume I'm a
drug seeker.
Because I say I can't have thisdrug.
(42:15):
I can't have this drug, justgive me this.
If you go into ED saying justgive me this drug, and you're a
regular visitor of ED, theyimmediately think drug seeker.
So they withhold treatment andthey treat you horribly.
So all of these experiencesthey withhold treatment and they
treat you horribly.
So all of these experiences.
I just decided, hopefully, Icould be of help, and so by
(42:36):
sharing my story with thatcampaign, I did end up helping a
lot of people.
And then I realized, you know,hopefully I could do the same
with IBD as well, and just innavigating the medical system
it's called Luminous Woundsbecause I have quite a few
different, you know, chronichealth issues and I didn't want
to focus particularly on onething.
A lot of people have told me ifyou change your name to make it
more specific about endo or IBD, you'll get more followers.
(42:59):
So it's a very little blog.
I don't have a bazillionfollowers, but I have quality
followers.
I will say that.
But I didn't want to change itbecause my whole thing has been
that, yes, these horrible thingshave happened to me, but at the
same time it makes me so muchmore grateful for the little
joys in my life and the big joysI think I've recently.
(43:21):
I talk a lot about my blog,glimmers.
You know it's the opposite of atrigger and it's something that
makes you feel joy and makes youfeel calm and, you know,
centered, and so I try and focuson all of that.
So one of my favorite quotes byRumi is the wound is where the
light enters, and that'sbasically like summing up my
experience as a spoonie, and soyou know someone with chronic,
(43:44):
so many chronic health issues.
So I decided to call itLuminous Wounds because, yes,
there are many wounds, but Ihave three beautiful kids, I
have a beautiful family and I amalways trying to find the joy
wherever possible.
And I think, if I can teachother people to do the same
thing and not give up no matterwhat they tell you, to keep
(44:07):
trusting that voice and to speakeven if your voice shakes
because mine has been shaking alot lately, but I still speak up
when I know something's wrongand I trust that.
So advocacy now is part of myjourney.
So I just thought starting alittle blog, see what would
happen, see who I can help.
Speaker 1 (44:24):
I love that.
What a great quote too.
No, I think that's reallybeautiful and I think it's good
that it's not disease specifictoo, because I think it is going
to be more impactful for thepeople like you that it's not
just one thing, it's multiplethings and unfortunately, with
our community, there are a lotof people that it's not just
their IBD, it's something elseon top of it, Even if it's just
the mental health struggle ofliving with a chronic illness
(44:46):
and you know that, gut brainconnection being a comorbid
thing that goes along with it.
Speaker 3 (44:51):
Exactly, and you know I've had complications from
twin pregnancy, from pregnancythat I've had to go in and have,
you know, pelvic floor Botoxall of last year to try and
reverse all the complicationsfrom my twin pregnancy.
So there's been so manydifferent things.
So I talk about all sorts ofthings fertility, ibd, endo, I
(45:12):
don't know, tmj, nerve pain,pain, life in general.
So yeah, I try and touch oneverything and hopefully can
help some people that way.
Speaker 2 (45:21):
There's no way that you're not helping people, I'm
sure of it.
Even though you said you have asmall quality following.
We have a small following aswell, a small quality following,
but we have kept you talkingfor longer than an hour now.
It's now time for me to ask youour last question, and that is
what is the one thing that youwant the IBD community to know?
Speaker 3 (45:43):
I would say for the IBD community and for chronic
illness warriors in general, totrust your gut and find a
specialist in your disease.
So not a general doctor, not adoctor that can necessarily look
at a whole bunch of stuff, butthat is focused in on the
disease that you havespecifically, because for me
(46:03):
that has been the difference,the key difference.
Making sure that they have thatexpertise is really key.
If I had known that 20 yearsago, I think my life might have
looked a little bit different.
I can't cry over spilt milk,though, so it is what it is.
But now I tell anyone who asksyou know I have these symptoms.
The first thing I say isendospecialist, ibd specialist,
(46:26):
not GI, not gyne.
Very, very specific.
Second is that you've got tospeak up.
You know, trust your instinctand they might be doctors, but
they're not gods.
We shouldn't be afraid of them.
There are wonderful doctors outthere, so keep going until you
find one.
Speaker 1 (46:42):
That's really great advice.
I mean, I totally understandyou're like I can't cry over
spilled milk, but it's hard toalso say I should have done this
when you were being told itwasn't what they said.
You know you kept being gaslitinto what it actually was.
So it's hard to find the rightspecialist when you don't really
know what's going on or youcan't Exactly, you don't have
the correct information to findthe best person to really treat
(47:03):
you is so helpful and you knowhaving these social media
communities is beautiful.
Speaker 3 (47:10):
You know we're here to help each other and so if you
recognize your symptoms oryou're hearing someone's story,
you recognize your story bysharing stories on podcasts like
these and in.
You know, online communitiesask the question.
You know don't be afraid to geton there and search for the
answers yourself.
You know we're made to feellike don't Google anything.
(47:30):
Yes, I agree, because there's alot of misinformation.
You do have to be careful whatyou believe.
You know.
If you hear someone telling youthey can cure your IBD, run a
mile Because there's no cure.
We know that.
So we do have to be carefulwhat we believe and listen to
online.
But trying to navigate that asbest you can and following
(47:51):
people that have references andtrusted sources is, I think,
just really invaluable very wildride with you, and so I can't
imagine being you.
Speaker 1 (48:11):
To be honest, this is where I joke that I really wish
we used the video, becauseRobin and I definitely were
reacting to your story quietlywhile you were talking, yes, but
thank you, thank you so muchfor sharing it.
We know that's not always easy,and so we really, really
appreciate you doing it, and Iknow sharing your blog is
incredibly impactful for ourcommunity, so thank you for
doing that as well.
Speaker 3 (48:27):
Thank you for giving me the opportunity to come on
and have a chat and to share mystory.
I really appreciate it.
Speaker 1 (48:32):
We love it.
We love it.
Thank you everybody else forlistening as well.
So cheers, guys, cheers.
Speaker 2 (48:37):
Cheers everybody.
Speaker 3 (48:38):
Hi, this is Tish, and if you enjoyed this episode,
please rate, review, subscribeand share it with your
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