A lot of people don't think their self -talk
is that bad. When I first say, you know, tell
me about your self -talk, they're like, it's
not that bad. But then when they start to pay
attention, they start to realize, oh, wow, yeah,
I do say a lot of negative things, like I can't
do that, I'm too tired, I'm too sick, I'm not
going to be able to, I'll never be able to. So
all that negative self -talk, start to catch
yourself. And when you catch yourself, stop and
change it to something the opposite. And it's
okay if the opposite sounds ridiculous. Today,
I have the pleasure of speaking with Trina, who
was diagnosed with Crohn's disease at age 37
in Vancouver, Canada. Trina, welcome to the show.
Thank you for having me. So we're going to talk
a lot about body image, intimacy in today's episode.
But before we get there, I'd like to take a step
back and focus a little bit on your individual
IBD journey. So tell me a little bit about when
your symptoms began and how they eventually led
to your IBD diagnosis. So it was actually in
2008 when my symptoms began and it was a reaction
to a pharmaceutical. I had taken Twinrix vaccine.
It's Hep A, B, and it was recommended for working
in a transition house. That's where I was working
at the time with a lot of people with multiple
barriers. So because they engaged in addiction
and that kind of thing, it put me at a higher
risk for Hep A or Hep B. So it was recommended.
And at that time, I didn't know that. people
ever had bad reactions to vaccines but I found
out pretty fast that some people do sometimes
and I was one of those people that time. My symptoms
were just disabling and majority they centered
around gastrointestinal issues and neurological
issues. Doctors just weren't able to help me.
I went on tons of different medications but none
of them helped my my symptoms they just kind
of masked them a little bit like I was on beta
blockers because my heart would race so fast
and I was on an antidepressant because I was
so depressed because I was so sick and doctors
I'm sure you've heard other guests say this and
maybe it's happened to you will often gaslight
you and suggest that it's all in your head So
I was going through that. I was being told that
it was all in my head. So the antidepressant
was recommended to, you know, deal with my head
problems. But that didn't make the symptoms go
away. And I was on like salt taps, a few different
medications, but none of them were helping me.
And at that time, I think because... I didn't
realize it was caused by the vaccine. And my
doctor, even though he was the one who administered
it, didn't catch that either. We didn't know
what was causing my issues. So we were just going
from specialist to specialist and getting tests
run. And I think another really common experience
of people with these issues is when you're first
sick, you'll feel sick for a long time before
your tests will come back. weird. It's like our
bodies could just balance things out until we're
so sick that they just can't balance things out
anymore or something. I don't know. But my symptoms
were really terrible, but my tests were always
coming back normal. But four years into that,
and actually I started to be able to manage my
symptoms during that time by changing my diet.
What had happened is I had developed food sensitivities
that I didn't have before the pharmaceutical
reaction. And so then I didn't realize that I
still had them. So I was eating all those foods.
And when I changed my diet and I went gluten
-free and I cut out like food chemicals and processed
foods, mostly that kind of stuff, I actually
felt like 80 % better. It felt like a miracle
at the time. But the gastrointestinal issues
just continued. There was like constipation,
then diarrhea, then constipation, a lot of like
just stomach pain and bloating and rectal bleeding.
And I was just told, eat more fiber. And I tried
that, believe me. It didn't work. Yeah, we all
did, right? So it just got worse and worse. In
2012, so this is four years after of me struggling
with these issues, I got really sick. And I felt
kind of like a flu because I was vomiting and
having diarrhea and feeling just very, very unwell.
But it just didn't, wouldn't go away. And I had
to go to work. I had to go back to work. you
know, I was taking so much time off, but I was
so, so ill. So I went to the hospital like two
or three times and they did an x -ray and they
said, you look a little gassy in your bowel,
they said. So they sent me home with a laxative.
And after I took the laxative, everything went
really downhill from there. I became so sick
that one morning my husband had took my our children
to school and daycare. And I was lying in bed
at home and I picked up my phone and I called
my mom and I said, Mom, I think I'm dying. I
feel like I'm dying. And she was on her way to
work and she turned around and she came back
and she called an ambulance and they came and
got me and they took me to the hospital. And
I had a really horrible experience there too,
where they forced me to take more laxatives.
They were basically just letting me die behind
a curtain because I had a bowel perforation.
And they didn't know it and they wouldn't run
any tests until I agreed to take another laxative.
But the first laxative had made me feel like
I was going to die. So I didn't want to take
it. But I finally gave in and it nearly killed
me. That night I had to have 75 % of my large
intestine removed. just so I wouldn't die because
I had a hole in my bowel and it was like leaking
poo into my body and then the bowel itself became
ischemic. So then I had a temporary ileostomy
for like four months and then they reconnected
me and then I spent 10 years trying to avoid
ever having an ostomy again and eventually got
to the point where my What was left of my large
intestine, no matter how hard I tried, I could
not heal it. So eventually just realized the
obstacle is the way and said, just give me the
surgery because I can't live like this anymore.
So they gave me the surgery. And that was huge
for me because the first time I had the ostomy,
I was so depressed and my life was like such
a mess. And I hated the ostomy so much and had
incredible insecurities around it. Like for that
four months, I couldn't have a life at all. I
cried every time it farted in front of someone
because like they, the ostomies that have a bowel,
not, not like, not your ostomies, but colostomies
and ileostomies, they can fill with air. They
can fart. You don't know what's going to happen.
Like you can't clench your butt cheeks, you know?
And it can be really embarrassing. And I didn't
have the resources or the understanding to manage
it at that time. So 10 years later, when I was
faced with it again, I decided I wasn't going
to allow myself to go through that again. During
that first time, it was about three years from
my surgery till I felt well enough to start to
live again. And during that three years, I went
through touch starvation. I became very spiritual
because I really needed something to hold on
to to get me through. And I became a really new
person and started to see life in an entirely
different way because... I couldn't live it.
And so I knew if I ever had the chance to live
it again, that I would just be so grateful. I
would never take another minute for granted,
you know. So coming out the other side, then
kind of skipped a little bit in the middle. That
is very integral to what I'm doing now. I left
my husband when I was well enough because we
didn't have a very good marriage. Hence the touch
starvation. And once I was out of that marriage,
I was living on disability, taking care of three
children, still struggling with my health. And
I needed a job that I could work that I wouldn't
get fired. And I used to be a stripper years
ago. So I went back to the strip club and I said,
can I be your massage girl? And basically a massage
girl in the strip club just gives like neck massages.
walks around, gives neck massages, and you're
self -employed, so I wouldn't get fired if I
couldn't work because I was sick, and I could
make enough money to help me live because disability
wasn't enough to support my kids. So while I
was doing that work, I literally would have,
like, I'd be massaging these men in the strip
club, and occasionally they would literally start
crying and say, no one's touched me in so long.
And I could relate because I went through that.
And I just started to really have like the sensitivity
for how people are suffering from not having
touch in their lives. And it became something
that just was important to me to advocate about.
I didn't expect to become a coach, but years
later, a few years later, I... Especially since
I got the ostomy. I just started intimacy coaching
about a year before, a couple years before the
ostomy. But now, especially since I got the ostomy,
I feel like people with disabilities especially
struggle with getting their intimacy needs met
and also with self -worth. And self -worth can
block intimacy. So it's just so important to
me to... try and help people overcome those issues
that I've learned how to overcome. So that's
kind of where I am now. I have an ostomy bag.
I'm not scared about it farting. You know, I'm
so still so grateful that I have life to live.
And I feel that coaching people who are dealing
with touch starvation or a lack of intimacy in
their lives is really rewarding. Right, right.
Well, that's quite a journey. And you just answered
about five, six questions that I was going to
ask you anyway, which is great. That kind of
moved things along. And I do want to take one
step back before we're going to dive in a little
bit into what it is that you're doing today.
So you had these surgeries. Obviously, you were
one of those very unfortunate people that did
not even have any time to... you know, emotionally
process getting ready for surgery, or at least
not your first surgery. And then you said, you
know, you looked at your ostomy and you hated
it. So my question for you about this journey,
I think it was a 10 -year period that you described
as well until you got to where you are today.
How did your perception of your own body shift?
And also, how long did it take you to feel grounded
again, you know, based on seeing that ostomy,
hating it, you know, and the surgeries that you
had? Those are great questions. I think every
person obviously goes through a grieving process
when your body is changed, especially if you've
taken pride in your body. And as someone who
had been an exotic dancer for years, my body
was how I made my money. I was very proud of
my flat, perfect stomach. you know my athleticism
so when i got really sick really frail i looked
like a skeleton i would go to the hospital and
be treated like i was a drug addict because i
looked like I just walked in off the street.
I was so skinny and frail. Not that drug addicts
should be treated that way, but it was like I
had to tell them I'm not a drug addict. You know,
it's just ridiculous. But it was so hard at first.
Like it was so hard to see my stomach destroyed,
the scars. Like even after the ostomy was reversed,
I had no belly button. I had extremely bad scars.
A few years later, I went back and had scar revision
surgery, which made the scar a little bit less
hideous, but still quite hideous. But what actually
made the difference for me to become more confident
was taking risks. I had to risk being naked in
front of a lover. I had to risk, you know, being
rejected. I had to see for myself that people
wouldn't be repulsed by me. You know, and because
I'd been in the adult entertainment industry
and I'd spent a lot of years nude modeling even,
I decided that... I especially after the recent
ostomy that I was going to like do a lot of photo
shoots. So, you know, with my bag showing and
feeling confident. But even before that, when
it was just the scars between my two big surgeries,
then that was that took me like being in a relationship.
So leaving my marriage where I never was touched,
starting a new relationship with someone and
and getting over my fear of them seeing my scars.
Really. And then not being rejected. So I think
there is another way of going about that now.
Because with my second ostomy surgery, I started
to go through all the fears again. I'm going
to be repulsive. No one's going to want to have
sex with me. My partner's going to leave me.
All of those thoughts started to come again.
And that time, I was able to address those emotions
and those feelings before my surgery. So that
when I had it, it was really smooth sailing.
And I did that by using visualization, which
is just so powerful. But literally like visualizing
myself doing all the things that I was scared
I wouldn't be able to do, including imagining
myself making love. But in all of my visualization,
having the bag. and it being fine and it being
great and it not even me not even noticing it
there and just visualizing myself living my life
happy go lucky with my bag transformed how I
experienced having the bag it sounds so simple
and it sounds like impossible that it made such
a big difference but it was literally within
days that I started to unclench and my fears
started to go away and I started to feel like
I already had had the surgery even though I hadn't
had it yet That's how powerful visualization
is. So with my clients, my coaching clients,
I'll often try to like skip the whole taking
risks first, you know, and let's go straight
to your feelings, your emotions. What are you
visualizing? What are you affirming to yourself?
And then that can give you a really big jumpstart
before you start going out and risking having
people see you and see your body. So you just
mentioned clients and you mentioned earlier,
of course, that you sort of transitioned into
this new purpose in your life, right? To coach
others and really focus on intimacy. What does
an intimacy coach do exactly in the context of
chronic illness or disabilities in general? The
reason I focus on people with disabilities is
because most people in coaching or even in therapy,
aren't disabled. And so they can't relate. And
I've been in that position of trying to access
care or therapy from people who just don't understand
what it's like. They haven't been through it.
Often they haven't, they aren't, haven't like
gotten as evolved as I am because of what I've
been through. And I'll feel like I'm not really
getting from them what I need. For instance,
you know, when you're sick and you're trying
to explain it to someone, a normie, a normie
who's never been sick. And they say something
dumb or really rude because they really have
no idea what to say. Or you go through a major
surgery like what I went through and there are
friends that just suddenly disappear. And it's
not because they don't like me anymore. It's
because they don't know what to say. They don't
know how to relate. It's like if someone you
know has their child or their parent die. You
know, you'll see so many people hightail it out
of there because they just don't know how to
relate. They don't know how to talk. And then
if you are disabled and someone says something
wrong to you and you react poorly, like, why
did you say that? You know, now you're pushing
them away even more. And and it's not that they
are intending usually it's not that they're intending
to be offensive. They're just don't know what
to say. Right. But I kind of went off on a tangent
there. But as someone who's been through this
stuff, I can I can like say things. I can even
say it be a little more edgy. I can even be a
little more crude, kind of like you're talking
shit podcast because you're you're talking about
literally, you know, human. stuff. And a lot
of people who are having problems with ostomies
or things that have to do with bodily fluids
or sex, it's very uncomfortable to talk to someone
who has no idea what they're going through and
has never been through it. So in that way, I
can relate to people. I don't have to worry too
much about what I say because I... I know what's
offensive. Like if someone tells me a gross story,
I'm not going to act disgusted, you know, for
instance. But definitely having a background
in the adult entertainment industry and then
going through my health journey, I'm the type
of person that my clients tell me they just feel
really comfortable to say anything. And that's
kind of the key, right? Absolutely. So we agree
that most people who are going through these
types of IBD journeys, surgeries, ostomies, obviously
a whole bunch of issues that they're dealing
with, insecurities, body image issues. And then,
of course, like you mentioned, touch starvations
and sort of fears about being intimate in the
future, having sexual relations, et cetera. How
do you help someone? that approaches you who
is convinced that their body is now unattractive
or unlovable because of their ostomy? Yeah, unfortunately,
I can't convince them. It's something they have
to do for themselves. All I can do is help them
learn strategies and techniques to change their...
perspective of themselves and that's by using
like self -talk strategies visualization also
on my end pep talks and you know sharing stories
to provide context so if it's like for instance
I have a client who is he's struggling with walking
due to a disability as he gets older he's looking
at having to use a cane. He actually has a cane.
He probably should be using it already, but it's
a block for him. It's a fear. It's an insecurity.
It makes him feel like he's weak if he uses it.
And so what we talked about, for instance, is
doing the visualization of imagining himself
using his cane. And it's not a problem. And it's
not a pain in the ass. And nobody looks down
on him. And imagining himself feeling strong
and proud and using his cane and walking into
the different situations of his life, depending
on what the specific... situation that the person
is trying to avoid we can go through like the
visualization of it there's also like walking
through uh worst case scenarios which i find
really helpful where we actually walk through
what if what's the worst thing that could happen
if if you take this risk and then what and then
what and often it's manageable even if the worst
thing happens it's manageable and it's worth
the risk But I mean, a lot of touch starvation,
a lot of people with touch starvation are married.
So a lot of the coaching I do is if I have a
male client, it's on like how to understand your
woman, your wife's mind, so that you can attract
more intimacy back into your relationship. And
there is such a misunderstanding between. men
and women especially because we just we we are
wired differently so that could really create
a block in especially long -term relationships
once that kind of excitement wears off you know
like attracting touch and intimacy into your
life can be as simple as like imagining you're
sending out love energy for just one whole day
You know, there's just all these different techniques.
A big part of the fear of intimacy, it's not
just usually intimacy. It seeps into other parts
of the life. So some of the small risks people
could take might not be intimacy related at all.
They might just be like, go to a party or, you
know, invite your friend out for dinner or something
like that. And then increasing opportunities
for non -sensual touch, which is so important
because especially in relationships where there's
a lack of intimacy, when you increase that non
-sensual touch, sometimes that can be enough
to start to bring the desire back into the relationship.
What's non -sensual touch for people who've never
heard of this? Yeah, I'm so used to saying non
-sensual because you can't say sex on Instagram.
But basically non -sexual. So, you know, hugging
without expecting sex, rubbing someone's back,
giving them a massage without expecting sex,
having a 20 second hug, resting your hand on
their leg, touching their face and giving them
a kiss or, you know, things that don't aren't
the wife or the husband aren't thinking this
is going to lead into sex right now. Gotcha.
Gotcha. Okay. So you've been talking a lot about.
touch starvation. And I'm very keen to know,
based on your personal experience and specifically
for your IBD clients, is there a major discrepancy
between genders, you know, male, female? Is it
pretty balanced? Based on my experience and my
clients, I would say that there are more men
who are touch starved. For instance, like...
Women are more likely, especially if they have
young children, to be constantly getting hugged,
having their child on their hip, having, you
know, their children touching them all the time.
In fact, a lot of mothers can be like over -touched.
Like, I just don't want anyone to touch me right
now, you know? And whereas like you won't maybe
see that as much with the father who's out of
the home and providing and not getting as much
of that kind of touch in his life. That would
provide a discrepancy there. Also, what I find
is that women maybe don't realize that they need
touch as much or they don't prioritize it as
much. So there's two kind of aspects to that.
One is where they have just, they've just...
use it or lose it. They haven't used it and they've
lost it. You know what I mean? They just, they
get so accustomed to not having it in their life
and they just get used to their life being that
way. And it's just, they don't think they need
it. But they don't realize how important it is.
And actually they're, you know, their likelihood
of getting sick, their likelihood of having any
kind of problems increases when they don't have
touch and intimacy in their lives. The one thing,
other thing is like women are more likely to
hug their friends. They're more likely to like
sit close to their friend and like cuddle and
watch a movie. They're more likely to have emotional
bonding with their friends. So women are experiencing
more intimacy that's not necessarily touch usually
than men. But like in my case, and in a lot of
people who are sick, you're not having those
bonding moments with your friends. You're not,
you know, you're not even being touched by your
children, whatever. So that touch could just
go completely out the window. Men, on the other
hand, they usually prioritize intimacy. And the
reason for that is because men access their emotional
connection and their bonding through physical
intimacy. So you're much more likely to have
a really emotional bonding conversation with
a man after you've had some physical intimacy.
Whereas women, we tend to like need that bond
before we feel desire. So kind of recognizing
those differences. And men, because they're so
unlikely to ask for help, their friends aren't
like giving them hugs. And so if their wife starts
rejecting them, they can internalize that as
something wrong with them. They start to doubt
their ability in the bedroom, and then they won't
ask for it. A woman, if she feels like her man's
not touching her enough, will usually eventually
ask for it. But a man is less likely. Once he's
been rebuffed a few times, he's less likely.
Or what could happen too is he doesn't understand
how to get his wife. in the mood or, you know,
get that kind of reaction from women. And so
he'll behave in ways that will actually push
it away more, you know? Well, of course, of course.
So you talked a little bit about, you know, your
own fears, potentially insecurities, especially
when talking about intimacy post -surgery. What
I... What are the most common fears that you
see people have before initiating intimacy post
-surgery? With ostomies, I think two big ones.
Will the bag fart? And will the bag leak? Those
are the two big ones to do with ostomies. And
I can quickly tell people how to handle that.
So if the bag farts, you just go, oops. put your
hand over it so it stops or so you can muffle
it and just go oops and then keep going pretend
it didn't happen after that because if you make
a big deal out of it out of it that's going to
make your partner uncomfortable that will it's
not the fart that's going to kill the moment
it's the it's your negative reaction that will
kill the moment so if you can act like it's no
big deal you're doing your partner a big favor
like huge You don't want to make them uncomfortable
by, like, being like, oh my god, I'm so embarrassed,
you know? Just think of all the weird noises
that happen during sex. Like, when we were young
kids, sure, we'd laugh, like, oh, but as we get
older, we're like, oops. And then with the bag
leaking, it usually doesn't happen, number one,
so. Don't worry too much about it. Number two,
if it does happen, the majority of people that
this has happened to report that their partners
were not grossed out. They weren't. It didn't
wreck their relationship. It didn't turn anyone
off. And I've actually had it happen to me. And
the person I was with just waited patiently while
I went. dealt with it in the bathroom cleaned
up yeah yeah and luckily for me it wasn't like
a big usually if something starts to kind of
go in that situation we could catch it before
it's a you know a big mess or anything so it's
not like it's the end of the world it's just
it's just like oh shit literally um i i gotta
go to the bathroom uh my bag is leaking and then
you go you change your bag you come back you
keep going Right, right. So what I'm getting
from this, what I'm starting to pick up from
based on what you're saying is that is it better
to just be frank, be straightforward, be candid,
potentially introduce a little bit of humor and
things will kind of take care of themselves?
Because it's still pretty tough, I think, for
people to imagine that, hey, oh, just being casual
will probably solve the problem. But that doesn't
necessarily reassure me, right? Because I might
be too embarrassed. Is it as... easy for people
as you described also like well at first you
kind of have to fake it right and if you're faking
it if you're faking it for your partner right
like ladies can understand this just just kidding
um but if you're like if you're faking it because
you don't want to make your partner or the other
person feel uncomfortable it's a little easier
you know if you know you're you're doing it for
them like yeah you i mean i've turned bright
red and went oops And then just keep going, you
know, like, yeah, it's, it's embarrassing. Right.
But if you remind yourself and also like, like
think of it from the other perspective, if it
was your partner and they had a bag and you're
in the middle of having some fun and their bag
farts and like, would, do you want them to start
crying about it? I mean, literally, I would have
started crying about it back in the day. So I'm
not laughing at people who do cry because I know
that feeling. But obviously, you don't want them
to. You don't. You just want them to feel safe
and comfortable with you and know that you're
not going to judge them. Right. I mean, in the
very unlikely situation, which it can happen
if you're with a very. not nice person you could
be with you could be with someone that's rude
or mean and and you could go through something
really bad because of that and if that's the
case i mean i can't help but suggest that that's
not your person you know of course yeah so you
you talked about the actual acts of intimacy
but getting there is a whole different story
so i'd like to ask you now if we look at this
From a practical point of view, what steps can
couples take to rebuild a certain level of intimacy
after long periods of IBD illness? Well, I'll
start with like when someone's sick, right? Because
when we're sick, people are scared. They don't
know if they should touch us. they don't know
if they can touch us, right? And sometimes they'll
touch us, and the way they're touching us, it's
either, you know, we can't handle it, or it's
too much, or it's too, it tickles, or it hurts.
I've created an intimacy guide for people with
ostomies, and I'd like to create one for the
partners of people with ostomies. And one thing
I would really like partners to do is just to
keep touching their sick spouse. keep touching
them even if they push you away sometimes find
out what they can tolerate if it's just a hand
on the leg in the hospital bed if it's like light
petting of the hair like give give them 10 minutes
if that's all you can give you know longer would
be great or more often maybe not even longer
sometimes when you're sick having touch for too
long is too much But often, maybe just a little
more often, very light, tender, kind touch. And
if they're like, that tickles, then you know
it's too light. But if they say, don't touch
me like that, don't give up. Don't give up and
just be like, fine, I'm not going to touch you.
Because we need to be touched. We just, we're
really fragile and our... sensitivity, like the
nerve endings of our skin are reacting differently
right now, we still need to feel like you care
about us. That's the main thing. And touch, even
just a little bit of touch, just a tiny little
bit of touch here and there when you're talking
to your spouse is going to make a big difference.
And then when, if you're trying to rebuild intimacy
in a relationship that hasn't had it for a long
time, Communication is really important, but
I feel like often what will happen is it kind
of backfires because in the moment, you know,
one person will say something and the other person
will take it the wrong way. Or there's just misunderstandings
because we don't really speak the same language,
especially in heterosexual couples. So what I
suggest and what I encourage. the person i'm
coaching to do is to start with the non -sexual
touch and just to increase that same kind of
touch like what I'm talking about if your spouse
is sick like just increase touch so in my case
I'm usually my most of my clients are the ones
with the disability and they're not being touched
anymore and they they start to internalize that
they feel like it's because of my ostomy bag
it's because I'm sick all the time it's because
I'm not lovable I'm not worthy anymore in my
partner's eyes and even if they don't verbalize
that in their minds it's how they start to feel
So it's kind of like hard sometimes for them
to say, well, I'm the one who has to do the work
now. And the work for them would be to start
increasing emotional bonding and non -sexual
touch in the relationship. So more long hugs,
trying to get them for like 20 seconds at least,
because that's when the hormones start getting
released that calm us and make us feel like we're
connecting to the person and we're bonding with
the person. So 20 second hugs, you know, cuddling
on the couch, foot massages, just touching, non
-sexual touching, legs touching when you're sitting
next to each other, things like that, building
that up. And then women, if it's like, if it's
a man, women really like to feel loved. like
loved like give give her tell her she's sexy
tell her she's beautiful pay attention to her
in crowds in front of people that that those
are the kinds of things that will make a woman
feel that bond that connection that desire um
that will bring her back and make her and it
makes her not want to do it to please you. It
makes her want to do it because she's feeling
in love with you, you know? So that's, that's
kind of the way to a woman's heart. With men,
it's really about validation mostly because men,
men are doing their best, but they're not getting
a lot of feedback on it, I feel like. So appreciation
for like how hard they work and saying thank
you. And also, once you are in an intimate situation
with a man, being open to your own pleasure,
being unafraid to let go, you know, because that
that's what really gets like men. Their biggest
thing in the bedroom is like, how is she enjoying
this? Women are like, does he think I look fat?
You know. oh my God, he touched my stomach. He
touched that roll on my stomach, you know, or
something. That's the kind of thing that a woman
will think that will take her out of the moment.
And men will be taken out of the moment because
they're like, am I pleasuring her? Is she happy?
Is this working? Am I doing it right? And a lot
of women don't realize it, but they're just too
quiet, you know? Like just a little bit of feedback
would make a big difference in their relationships,
you know? And they'll see that being Having a
little more verbal communication in those encounters
actually can make it so much better. But people
don't realize that because they fear to make
noise. They fear to make a funny face. They fear
to bend forward and have their stomach hang or
their, you know, all the normal things of being
human. But it's like instead of being in our
fear, we need to get into our connection. Instead
of focusing on does this person like what I'm
doing or does this person like me, we should
be focusing on how can I connect with this person.
And then the connection is what will lead to
the really amazing encounters, right? Right,
right. When you began your answer, I sort of
started to get this feeling that you certainly
favored the touch more than the communication.
And you mentioned it, you said communication
is important, but, you know, because to most
of us, we always hear about communicating. Communicating
is so important. It's so crucial, right? But
then, you know, towards the end, especially when
you're talking about men, we talk about men,
you know, giving compliments to women, you know,
those are verbal responses and verbal affirmation.
So there is communication there, right? So what
I just want to make sure is that, and correct
me if I'm wrong, but... favoring touch is probably
a good starting point, but you don't give up
on communication entirely, right? There are aspects
of communication that are important, right, to
maintain. I mean, I think communication is like
the most important thing, honestly. But the problem
is how we're communicating. And often when we're
communicating, especially about this subject,
feelings get hurt really easily. Or we say things
in a way that the other person takes it different
from how we actually mean it. And it just, like,
for instance, like, imagine a man saying to a
woman, like, I can't live without sex for the
rest of my life. You know, like, when can I expect
to have sex again? like I've been cleaning dishes
every night for a week I just bought you that
beautiful ring I you know I I work my ass off
for you like and you don't won't even give me
sex you know and like a woman isn't going to
respond well to that that's communication but
she's going to feel hurt she's going to feel
upset she's going to that she's going to blame
you Yeah, but what about when you were criticizing
me for making that meal the other night? You
know, or whatever, right? So in that way, communication
has to be done delicately. It has to be done
in a very vulnerable, open way. And I think understanding
your partner. better can help you do that. Because
if you don't understand why they might be pulling
away, um, and, and the reasons are usually pretty
typical in any situation. So it's not like, um,
it's not like it's different for people with
disabilities. We just feel like it's different
because we feel like our disability is what's
making someone not want to touch us, you know?
Of course. Of course. So obviously to be able
to be comfortable with intimacy and acts of intimacy,
You kind of have to be comfortable with the body
that you live in. You know, IBD surgeries, ostomies,
it really does mess with the body image of the
patients. What do you wish that people would
understand better about a body that changes because
of IBD? I think one of the biggest things that
I wish... that people would understand and I
really highly promote to all my clients. People
who can't have penetrative intercourse often
just give up. They give up. No one's ever going
to want to have sex with this limp. you know
or no one you know no man's ever going to want
me because I can't do it so this this is like
extreme these are people like they they fear
they're never going to be able to have penetrative
sex again and that means they can never have
intimacy again and then there's the people who
can do it that way but that's all they do let's
get in there get out of there you know And so
I like to promote a middle ground. If you can't
obviously do penetrative sex, you find what you
can do that works for you as a couple. But I
like people to set aside a whole hour with no
distractions, no phones, have some ambiance.
Did I say that right? Ambience, ambience. Absolutely.
No, ambience, yeah, that's great. And then spend
a whole hour like dedicated to just naked hugging.
Naked hugging. Naked hugging. Naked hugging,
talking. Maybe you do make love, but if you do,
don't walk away. Make sure you stay there for
the full hour, you know, and dedicate that time
to physical and emotional bonding. It builds
the bond, right? Once you build the bond, like
men, like we said, are more likely to be communicative.
They're more likely to communicate and tell you
their deepest fears and longings after they've
experienced physical intimacy with you, because
that's what releases the bonding hormones in
men. But women need that conversation and that
eye contact and the words of... affirmations
of like beauty, you know, and desire, like you're
so sexy and you look so good tonight and I love
you in that dress. And so if we're lying there
for a whole hour naked hugging and saying nice
things to each other, it's pretty incredible
what you can come out of with that. And it can
be, it doesn't have to be like rules around the
conversation or anything. You know, right. As
long as nobody is the conversation police and
everybody is respectful and kind and loving.
You get through that whole hour and you walk
out of the bedroom smiling or whatever room you're
in. And it's just such so important. And it's
so sad that I see so many women, especially who
have kind of given up on intimacy in their relationships.
And so many men who are like, what am I going
to do now? I still believe that there's this
cultural obsession out there with flat stomachs,
right? And now we're looking at IBD and ostomies.
It's not just a bag. It's scars, right? It's
potentially, you know, bloating. How do you think
that it hits women with IBD and ostomies differently?
I think there is an obsession, just like you
say, especially in popular media with having
like a perfect stomach. Like every time a celebrity
has even a little bit of bloating there, you
know, are they pregnant? Do they need to lose
weight? So that kind of pressure is definitely
on women coming from the adult entertainment
industry where like I had like this perfect flat
stomach. I was pretty devastated when it was
gone. And now I do. I struggle with clothing
choices like I want. Do I wear? something that
if my bag gets a little bit of air in it or anything
that it won't be noticeable or do I just keep
my eye on it all night so I can wear this really
cute slimming dress so those are definitely considerations
and it is hard then that's one of the things
I'm trying to do by showing pictures of me half
naked on my socials is to show my scars and show
my bag and and it was hard I mean people say
I make it look easy but it It's scary. It's scary
to just expose myself like that. But I do want
to normalize a little belly. I do want to normalize
scars and a bag. But especially the belly, because
every woman has a little bit of a belly as they
get older. You know, and even some of the young
women. I mean, that flat, youthful stomach that
we had before we had babies and before our surgeries
and before we got older, even if we didn't have
surgeries, they're not going to be there forever.
I mean, there are a few lucky older women you
see that are just like buff. There's always a
few lucky ones. Yeah, there's always a few. But
the majority of us, we got a little bit more,
you know, cushiony in the different places. When
you have some people like me and other ostomates
and other people with different bodies being
comfortable and proud of how they look and being
confident. And when you see other people responding
to that positively, then it gives you more courage.
And I have to say, and I have to admit this,
as much as I hate social media. Now being very
active in this field, especially also, you know,
in my mission to raise IBD awareness, I am, it's
really beautiful to see, you know, people like
you and many more, especially women and men also,
who actually are not afraid or no longer afraid
to show their ostomies, to show their bags, right?
To show themselves in bikinis. And, you know,
I talk a lot about, I mean, we're not even going
to dive into social media and insecurities related
to social media with, you know, what people are
posting. But, you know, when I see estimates,
you know, sort of like just probably displaying
themselves on social media and, you know, you
actually take the time to read the comments,
dive into the engagement. It's all about hope.
It's all about inspiration. It's all about finding
security. So there seems to be a movement. into
very positive directions with people, men and
women, becoming more comfortable and sort of
really leading this inspiration to be okay with
that new body that you find yourself in, right?
And that's something beautiful to see. It helped
me a lot. It did. It helped me a lot. And something
I've also learned from doing my coaching is about
how people who have been like poked and prodded
our whole lives, it's very empowering for us
to kind of take back control of how we show our
bodies to people. And so in the process of doing
photos and videos and exposing our bodies with
our bags, we're actually taking back some of
the control that we feel we've lost over our
own bodies. Absolutely. Absolutely. So as we
now come to closer to the end here, I want to
finish with a few thoughts on empowerment, but
also a couple of practical takeaways when it
comes to body and intimacy, especially in the
context of IBD. So tell me from you, the intimacy
coach, what is one key mindset shift that you
want every IBD patient to try? I mean, my biggest
thing is the visualization. And it's where you
literally imagine yourself living out all the
things that you fear. But in your visualization,
it all goes perfectly, perfectly well. Absolutely,
100 % awesomely well. And you just keep visualizing
that. And it's amazing what a difference it makes,
like a huge difference. And then self -talk,
I always have to mention. Self -talk is where
everything begins. It is. So if I come to you
as somebody who's very timid and kind of embarrassed
and I asked you, okay, but in one or two sentences,
how do I start visualization? Just like, how
do I do this? What would you tell me? I would
say, sit down, close your eyes. And then imagine
a future scenario of the thing that you fear.
So for me, for instance, I was scared of what
it would be like to make love with an ostomy
bag. I was scared I wouldn't be able to dance
or go swimming or stand in front of a crowd and
speak because what if it farted? I had all these
fears before I had the second. the second surgery
but when I visualized myself doing those things
with the bag and everything went fine in each
of those scenarios after a very short time of
doing that just closing my eyes for five minutes
or less a day and I even had a soundtrack I recommend
having a soundtrack like something that you feel
music that you feel empowered by and you listen
to it while you visualize that. And I recommend
having a script. So you do it exactly the same,
the same visualization every time. So you're
putting yourself into the same situations every
time. And they might change slightly, but every
time it comes out fine. And you don't let any
bad come into your visualization. So you're not
in the middle of making love with a bag and then
it leaks. No. Sure. No, no, of course. Give me
the same brief step -by -step for self -talk.
Self -talk is, first of all, catching yourself.
And a lot of people don't think their self -talk
is that bad. When I first say, you know, tell
me about your self -talk, they're like, it's
not that bad. But then when they start to pay
attention, they start to realize, oh, wow, yeah,
I do say a lot of negative things. Like, I can't
do that. I'm too tired. I'm too sick. I'm not
going to be able to. I'll never be able to. So
all that negative self -talk, start to catch
yourself. And when you catch yourself, stop and
change it to something the opposite. And it's
okay if the opposite sounds ridiculous. You know,
if I'm like walking through the house and I bang
my knee on something and I go, oh, I knew that
was there. I'm so stupid that I stop and I go,
I'm not stupid. I am incredibly intelligent.
I'm the smartest woman on the planet. It makes
me laugh. It rewires what I've just told my subconscious
because our subconscious believes anything we
repeatedly tell it. And so and then it gets me
in a good mood. So I'm also having a positive
emotion with that, you know, positive self -talk.
And if you could catch yourself and do that every
time you catch yourself, it makes such a big
difference. Like you might spend, it might take
a long time for you to be able to stop yourself.
from saying the negative things you might catch
yourself halfway through you might catch not
even be able to catch it till you've already
said it eventually you'll catch yourself before
you say it but it takes learning to catch yourself
and then saying the positive and then the other
part of it is to have like a list of affirmations
of all the things that you actually want to believe
about yourself and just reading it every day
I mean, it makes such a big difference. Like
I used to, I've had the same affirmations for
years and now I can look at my affirmation list
and I actually believe almost everything on that
list. You know, one of the things I don't believe
is I'm a billionaire. That'll come later. Oh
boy. But you know, like I do feel like I'm charming
and I do feel like I'm irresistible. But I didn't
feel that way when I started my affirmations.
And they're so, so fascinating that we can program
our subconscious to believe whatever we repeatedly
tell it. It really is amazing. Like you just
said, you didn't feel irresistible at one point,
and it took a journey to get to the point where
you feel it. So now, based on your... IBD journey
based on your experiences, based on the work
that you do as an intimacy coach. If you look
back, what is one thing that you wish you had
been told earlier about IBD in your journey?
I guess, honestly, I think it really relates
to my purpose of trying to help people with touch
starvation. I wish that someone had told me that
touch is a need, not a want. Because babies can
literally die without it, and just because we
grow up and become adults doesn't mean we don't
need it anymore. And then I would have maybe
made more of an effort to have my touch needs
met, or at least understood why I was feeling
the way I was feeling. Because when you're not
touched for a long time, you might not consciously
realize it, but you subconsciously... Begin to
believe that you're not worthy of touch. And
that can have really devastating impacts on your
self -esteem and your health. Your final message
to someone who feels unlovable because of Crohn's
or colitis. You are not unlovable at all. You
were put on this earth to be here and learn and
you have a purpose. You're not dead yet. That's
how I know. If you weren't supposed to do something
or be someone, then you wouldn't still be here.
So get off your ass. Stop feeling sorry for yourself.
And get to work on whatever your purpose is.
And if you can't do that without a little help,
I'm here for you. Reach out. That's a perfect
way to wrap things up. Trina, thank you so much
for sharing your insight, for sharing your experience.
coaching, but you're also active on social media.
You're also podcasting. We're going to put all
of that information in the show notes as well
for our listeners to find you and seek you out.
I wish you nothing but the best on your continuing
journey. I think the insights that you provided
today are really, really fascinating to me. And
I think you'll agree with me and I don't want
to put words in your mouth, but... Intimacy is
not talked about enough, especially in relation
to chronic illness. And I think the conversation
today will at least kickstart some thinking or
critical thinking. I think a lot of people that
are going through body change and potential insecurities.
So thank you so much for sharing your insight
again. And I wish you nothing but the best. You
as well. Thank you for having me. This has been
wonderful. That's it for today's episode of Colitis
Unfiltered. I'm Frank Klebering, and if this
hit home or hit your gut, do us a favor. Subscribe
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stories from the bathroom floor.