Latest / Crohn's & Colitis Unfiltered / IBD, intimacy and self-worth: Trina’s mission to rebuild confidence

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IBD, intimacy and self-worth: Trina’s mission to rebuild confidence · Crohn's & Colitis Unfiltered

0:02
A lot of people don't think their self -talk
0:04
is that bad. When I first say, you know, tell
0:06
me about your self -talk, they're like, it's
0:08
not that bad. But then when they start to pay
0:11
attention, they start to realize, oh, wow, yeah,
0:14
I do say a lot of negative things, like I can't
0:17
do that, I'm too tired, I'm too sick, I'm not
0:20
going to be able to, I'll never be able to. So
0:23
all that negative self -talk, start to catch
0:27
yourself. And when you catch yourself, stop and
0:30
change it to something the opposite. And it's
0:33
okay if the opposite sounds ridiculous. Today,
0:37
I have the pleasure of speaking with Trina, who
0:40
was diagnosed with Crohn's disease at age 37
0:43
in Vancouver, Canada. Trina, welcome to the show.
0:47
Thank you for having me. So we're going to talk
0:50
a lot about body image, intimacy in today's episode.
0:54
But before we get there, I'd like to take a step
0:57
back and focus a little bit on your individual
0:59
IBD journey. So tell me a little bit about when
1:04
your symptoms began and how they eventually led
1:08
to your IBD diagnosis. So it was actually in
1:11
2008 when my symptoms began and it was a reaction
1:16
to a pharmaceutical. I had taken Twinrix vaccine.
1:20
It's Hep A, B, and it was recommended for working
1:23
in a transition house. That's where I was working
1:25
at the time with a lot of people with multiple
1:29
barriers. So because they engaged in addiction
1:34
and that kind of thing, it put me at a higher
1:37
risk for Hep A or Hep B. So it was recommended.
1:42
And at that time, I didn't know that. people
1:45
ever had bad reactions to vaccines but I found
1:49
out pretty fast that some people do sometimes
1:51
and I was one of those people that time. My symptoms
1:55
were just disabling and majority they centered
2:00
around gastrointestinal issues and neurological
2:05
issues. Doctors just weren't able to help me.
2:09
I went on tons of different medications but none
2:12
of them helped my my symptoms they just kind
2:15
of masked them a little bit like I was on beta
2:18
blockers because my heart would race so fast
2:20
and I was on an antidepressant because I was
2:23
so depressed because I was so sick and doctors
2:27
I'm sure you've heard other guests say this and
2:29
maybe it's happened to you will often gaslight
2:32
you and suggest that it's all in your head So
2:36
I was going through that. I was being told that
2:38
it was all in my head. So the antidepressant
2:40
was recommended to, you know, deal with my head
2:44
problems. But that didn't make the symptoms go
2:47
away. And I was on like salt taps, a few different
2:51
medications, but none of them were helping me.
2:55
And at that time, I think because... I didn't
2:59
realize it was caused by the vaccine. And my
3:03
doctor, even though he was the one who administered
3:05
it, didn't catch that either. We didn't know
3:08
what was causing my issues. So we were just going
3:11
from specialist to specialist and getting tests
3:13
run. And I think another really common experience
3:16
of people with these issues is when you're first
3:20
sick, you'll feel sick for a long time before
3:23
your tests will come back. weird. It's like our
3:26
bodies could just balance things out until we're
3:30
so sick that they just can't balance things out
3:32
anymore or something. I don't know. But my symptoms
3:35
were really terrible, but my tests were always
3:39
coming back normal. But four years into that,
3:42
and actually I started to be able to manage my
3:46
symptoms during that time by changing my diet.
3:49
What had happened is I had developed food sensitivities
3:53
that I didn't have before the pharmaceutical
3:56
reaction. And so then I didn't realize that I
4:00
still had them. So I was eating all those foods.
4:02
And when I changed my diet and I went gluten
4:05
-free and I cut out like food chemicals and processed
4:09
foods, mostly that kind of stuff, I actually
4:12
felt like 80 % better. It felt like a miracle
4:17
at the time. But the gastrointestinal issues
4:20
just continued. There was like constipation,
4:24
then diarrhea, then constipation, a lot of like
4:28
just stomach pain and bloating and rectal bleeding.
4:34
And I was just told, eat more fiber. And I tried
4:38
that, believe me. It didn't work. Yeah, we all
4:41
did, right? So it just got worse and worse. In
4:48
2012, so this is four years after of me struggling
4:51
with these issues, I got really sick. And I felt
4:57
kind of like a flu because I was vomiting and
5:00
having diarrhea and feeling just very, very unwell.
5:04
But it just didn't, wouldn't go away. And I had
5:08
to go to work. I had to go back to work. you
5:11
know, I was taking so much time off, but I was
5:13
so, so ill. So I went to the hospital like two
5:16
or three times and they did an x -ray and they
5:19
said, you look a little gassy in your bowel,
5:22
they said. So they sent me home with a laxative.
5:26
And after I took the laxative, everything went
5:30
really downhill from there. I became so sick
5:35
that one morning my husband had took my our children
5:39
to school and daycare. And I was lying in bed
5:42
at home and I picked up my phone and I called
5:45
my mom and I said, Mom, I think I'm dying. I
5:48
feel like I'm dying. And she was on her way to
5:51
work and she turned around and she came back
5:53
and she called an ambulance and they came and
5:57
got me and they took me to the hospital. And
6:00
I had a really horrible experience there too,
6:04
where they forced me to take more laxatives.
6:07
They were basically just letting me die behind
6:10
a curtain because I had a bowel perforation.
6:13
And they didn't know it and they wouldn't run
6:15
any tests until I agreed to take another laxative.
6:18
But the first laxative had made me feel like
6:21
I was going to die. So I didn't want to take
6:24
it. But I finally gave in and it nearly killed
6:28
me. That night I had to have 75 % of my large
6:32
intestine removed. just so I wouldn't die because
6:35
I had a hole in my bowel and it was like leaking
6:39
poo into my body and then the bowel itself became
6:42
ischemic. So then I had a temporary ileostomy
6:48
for like four months and then they reconnected
6:51
me and then I spent 10 years trying to avoid
6:55
ever having an ostomy again and eventually got
6:59
to the point where my What was left of my large
7:02
intestine, no matter how hard I tried, I could
7:05
not heal it. So eventually just realized the
7:09
obstacle is the way and said, just give me the
7:14
surgery because I can't live like this anymore.
7:16
So they gave me the surgery. And that was huge
7:20
for me because the first time I had the ostomy,
7:23
I was so depressed and my life was like such
7:27
a mess. And I hated the ostomy so much and had
7:31
incredible insecurities around it. Like for that
7:35
four months, I couldn't have a life at all. I
7:38
cried every time it farted in front of someone
7:40
because like they, the ostomies that have a bowel,
7:44
not, not like, not your ostomies, but colostomies
7:47
and ileostomies, they can fill with air. They
7:50
can fart. You don't know what's going to happen.
7:53
Like you can't clench your butt cheeks, you know?
7:58
And it can be really embarrassing. And I didn't
8:01
have the resources or the understanding to manage
8:04
it at that time. So 10 years later, when I was
8:07
faced with it again, I decided I wasn't going
8:10
to allow myself to go through that again. During
8:13
that first time, it was about three years from
8:16
my surgery till I felt well enough to start to
8:20
live again. And during that three years, I went
8:24
through touch starvation. I became very spiritual
8:29
because I really needed something to hold on
8:34
to to get me through. And I became a really new
8:39
person and started to see life in an entirely
8:42
different way because... I couldn't live it.
8:45
And so I knew if I ever had the chance to live
8:48
it again, that I would just be so grateful. I
8:50
would never take another minute for granted,
8:52
you know. So coming out the other side, then
8:56
kind of skipped a little bit in the middle. That
8:59
is very integral to what I'm doing now. I left
9:02
my husband when I was well enough because we
9:05
didn't have a very good marriage. Hence the touch
9:08
starvation. And once I was out of that marriage,
9:13
I was living on disability, taking care of three
9:15
children, still struggling with my health. And
9:19
I needed a job that I could work that I wouldn't
9:22
get fired. And I used to be a stripper years
9:25
ago. So I went back to the strip club and I said,
9:28
can I be your massage girl? And basically a massage
9:32
girl in the strip club just gives like neck massages.
9:35
walks around, gives neck massages, and you're
9:38
self -employed, so I wouldn't get fired if I
9:41
couldn't work because I was sick, and I could
9:44
make enough money to help me live because disability
9:47
wasn't enough to support my kids. So while I
9:51
was doing that work, I literally would have,
9:54
like, I'd be massaging these men in the strip
9:58
club, and occasionally they would literally start
10:01
crying and say, no one's touched me in so long.
10:05
And I could relate because I went through that.
10:08
And I just started to really have like the sensitivity
10:11
for how people are suffering from not having
10:17
touch in their lives. And it became something
10:20
that just was important to me to advocate about.
10:25
I didn't expect to become a coach, but years
10:28
later, a few years later, I... Especially since
10:32
I got the ostomy. I just started intimacy coaching
10:34
about a year before, a couple years before the
10:38
ostomy. But now, especially since I got the ostomy,
10:42
I feel like people with disabilities especially
10:45
struggle with getting their intimacy needs met
10:49
and also with self -worth. And self -worth can
10:52
block intimacy. So it's just so important to
10:56
me to... try and help people overcome those issues
11:00
that I've learned how to overcome. So that's
11:03
kind of where I am now. I have an ostomy bag.
11:05
I'm not scared about it farting. You know, I'm
11:09
so still so grateful that I have life to live.
11:13
And I feel that coaching people who are dealing
11:19
with touch starvation or a lack of intimacy in
11:22
their lives is really rewarding. Right, right.
11:25
Well, that's quite a journey. And you just answered
11:28
about five, six questions that I was going to
11:30
ask you anyway, which is great. That kind of
11:33
moved things along. And I do want to take one
11:35
step back before we're going to dive in a little
11:37
bit into what it is that you're doing today.
11:40
So you had these surgeries. Obviously, you were
11:43
one of those very unfortunate people that did
11:45
not even have any time to... you know, emotionally
11:50
process getting ready for surgery, or at least
11:52
not your first surgery. And then you said, you
11:53
know, you looked at your ostomy and you hated
11:55
it. So my question for you about this journey,
11:58
I think it was a 10 -year period that you described
12:00
as well until you got to where you are today.
12:03
How did your perception of your own body shift?
12:08
And also, how long did it take you to feel grounded
12:11
again, you know, based on seeing that ostomy,
12:15
hating it, you know, and the surgeries that you
12:17
had? Those are great questions. I think every
12:21
person obviously goes through a grieving process
12:29
when your body is changed, especially if you've
12:33
taken pride in your body. And as someone who
12:36
had been an exotic dancer for years, my body
12:39
was how I made my money. I was very proud of
12:44
my flat, perfect stomach. you know my athleticism
12:48
so when i got really sick really frail i looked
12:53
like a skeleton i would go to the hospital and
12:56
be treated like i was a drug addict because i
12:58
looked like I just walked in off the street.
13:00
I was so skinny and frail. Not that drug addicts
13:03
should be treated that way, but it was like I
13:05
had to tell them I'm not a drug addict. You know,
13:09
it's just ridiculous. But it was so hard at first.
13:12
Like it was so hard to see my stomach destroyed,
13:15
the scars. Like even after the ostomy was reversed,
13:20
I had no belly button. I had extremely bad scars.
13:24
A few years later, I went back and had scar revision
13:27
surgery, which made the scar a little bit less
13:31
hideous, but still quite hideous. But what actually
13:39
made the difference for me to become more confident
13:43
was taking risks. I had to risk being naked in
13:49
front of a lover. I had to risk, you know, being
13:55
rejected. I had to see for myself that people
14:00
wouldn't be repulsed by me. You know, and because
14:04
I'd been in the adult entertainment industry
14:06
and I'd spent a lot of years nude modeling even,
14:09
I decided that... I especially after the recent
14:14
ostomy that I was going to like do a lot of photo
14:16
shoots. So, you know, with my bag showing and
14:18
feeling confident. But even before that, when
14:21
it was just the scars between my two big surgeries,
14:25
then that was that took me like being in a relationship.
14:30
So leaving my marriage where I never was touched,
14:33
starting a new relationship with someone and
14:36
and getting over my fear of them seeing my scars.
14:41
Really. And then not being rejected. So I think
14:45
there is another way of going about that now.
14:48
Because with my second ostomy surgery, I started
14:53
to go through all the fears again. I'm going
14:55
to be repulsive. No one's going to want to have
14:57
sex with me. My partner's going to leave me.
15:00
All of those thoughts started to come again.
15:03
And that time, I was able to address those emotions
15:07
and those feelings before my surgery. So that
15:11
when I had it, it was really smooth sailing.
15:13
And I did that by using visualization, which
15:17
is just so powerful. But literally like visualizing
15:21
myself doing all the things that I was scared
15:24
I wouldn't be able to do, including imagining
15:27
myself making love. But in all of my visualization,
15:31
having the bag. and it being fine and it being
15:36
great and it not even me not even noticing it
15:39
there and just visualizing myself living my life
15:42
happy go lucky with my bag transformed how I
15:47
experienced having the bag it sounds so simple
15:49
and it sounds like impossible that it made such
15:52
a big difference but it was literally within
15:54
days that I started to unclench and my fears
15:59
started to go away and I started to feel like
16:00
I already had had the surgery even though I hadn't
16:03
had it yet That's how powerful visualization
16:05
is. So with my clients, my coaching clients,
16:09
I'll often try to like skip the whole taking
16:13
risks first, you know, and let's go straight
16:15
to your feelings, your emotions. What are you
16:19
visualizing? What are you affirming to yourself?
16:21
And then that can give you a really big jumpstart
16:25
before you start going out and risking having
16:27
people see you and see your body. So you just
16:32
mentioned clients and you mentioned earlier,
16:33
of course, that you sort of transitioned into
16:35
this new purpose in your life, right? To coach
16:38
others and really focus on intimacy. What does
16:41
an intimacy coach do exactly in the context of
16:47
chronic illness or disabilities in general? The
16:51
reason I focus on people with disabilities is
16:54
because most people in coaching or even in therapy,
16:59
aren't disabled. And so they can't relate. And
17:03
I've been in that position of trying to access
17:05
care or therapy from people who just don't understand
17:10
what it's like. They haven't been through it.
17:12
Often they haven't, they aren't, haven't like
17:16
gotten as evolved as I am because of what I've
17:19
been through. And I'll feel like I'm not really
17:21
getting from them what I need. For instance,
17:25
you know, when you're sick and you're trying
17:27
to explain it to someone, a normie, a normie
17:31
who's never been sick. And they say something
17:35
dumb or really rude because they really have
17:37
no idea what to say. Or you go through a major
17:40
surgery like what I went through and there are
17:43
friends that just suddenly disappear. And it's
17:46
not because they don't like me anymore. It's
17:49
because they don't know what to say. They don't
17:52
know how to relate. It's like if someone you
17:55
know has their child or their parent die. You
17:59
know, you'll see so many people hightail it out
18:02
of there because they just don't know how to
18:04
relate. They don't know how to talk. And then
18:06
if you are disabled and someone says something
18:09
wrong to you and you react poorly, like, why
18:14
did you say that? You know, now you're pushing
18:16
them away even more. And and it's not that they
18:19
are intending usually it's not that they're intending
18:22
to be offensive. They're just don't know what
18:25
to say. Right. But I kind of went off on a tangent
18:27
there. But as someone who's been through this
18:30
stuff, I can I can like say things. I can even
18:34
say it be a little more edgy. I can even be a
18:37
little more crude, kind of like you're talking
18:38
shit podcast because you're you're talking about
18:43
literally, you know, human. stuff. And a lot
18:50
of people who are having problems with ostomies
18:54
or things that have to do with bodily fluids
18:57
or sex, it's very uncomfortable to talk to someone
19:00
who has no idea what they're going through and
19:03
has never been through it. So in that way, I
19:06
can relate to people. I don't have to worry too
19:11
much about what I say because I... I know what's
19:15
offensive. Like if someone tells me a gross story,
19:18
I'm not going to act disgusted, you know, for
19:22
instance. But definitely having a background
19:26
in the adult entertainment industry and then
19:28
going through my health journey, I'm the type
19:32
of person that my clients tell me they just feel
19:35
really comfortable to say anything. And that's
19:38
kind of the key, right? Absolutely. So we agree
19:43
that most people who are going through these
19:47
types of IBD journeys, surgeries, ostomies, obviously
19:50
a whole bunch of issues that they're dealing
19:52
with, insecurities, body image issues. And then,
19:55
of course, like you mentioned, touch starvations
19:57
and sort of fears about being intimate in the
20:02
future, having sexual relations, et cetera. How
20:05
do you help someone? that approaches you who
20:09
is convinced that their body is now unattractive
20:13
or unlovable because of their ostomy? Yeah, unfortunately,
20:18
I can't convince them. It's something they have
20:22
to do for themselves. All I can do is help them
20:25
learn strategies and techniques to change their...
20:31
perspective of themselves and that's by using
20:34
like self -talk strategies visualization also
20:39
on my end pep talks and you know sharing stories
20:46
to provide context so if it's like for instance
20:50
I have a client who is he's struggling with walking
20:56
due to a disability as he gets older he's looking
21:01
at having to use a cane. He actually has a cane.
21:04
He probably should be using it already, but it's
21:07
a block for him. It's a fear. It's an insecurity.
21:09
It makes him feel like he's weak if he uses it.
21:13
And so what we talked about, for instance, is
21:18
doing the visualization of imagining himself
21:22
using his cane. And it's not a problem. And it's
21:26
not a pain in the ass. And nobody looks down
21:28
on him. And imagining himself feeling strong
21:30
and proud and using his cane and walking into
21:34
the different situations of his life, depending
21:37
on what the specific... situation that the person
21:40
is trying to avoid we can go through like the
21:43
visualization of it there's also like walking
21:46
through uh worst case scenarios which i find
21:49
really helpful where we actually walk through
21:51
what if what's the worst thing that could happen
21:54
if if you take this risk and then what and then
21:58
what and often it's manageable even if the worst
22:03
thing happens it's manageable and it's worth
22:05
the risk But I mean, a lot of touch starvation,
22:10
a lot of people with touch starvation are married.
22:14
So a lot of the coaching I do is if I have a
22:20
male client, it's on like how to understand your
22:23
woman, your wife's mind, so that you can attract
22:28
more intimacy back into your relationship. And
22:32
there is such a misunderstanding between. men
22:36
and women especially because we just we we are
22:38
wired differently so that could really create
22:42
a block in especially long -term relationships
22:44
once that kind of excitement wears off you know
22:48
like attracting touch and intimacy into your
22:53
life can be as simple as like imagining you're
22:59
sending out love energy for just one whole day
23:03
You know, there's just all these different techniques.
23:06
A big part of the fear of intimacy, it's not
23:11
just usually intimacy. It seeps into other parts
23:15
of the life. So some of the small risks people
23:19
could take might not be intimacy related at all.
23:22
They might just be like, go to a party or, you
23:26
know, invite your friend out for dinner or something
23:28
like that. And then increasing opportunities
23:32
for non -sensual touch, which is so important
23:35
because especially in relationships where there's
23:39
a lack of intimacy, when you increase that non
23:42
-sensual touch, sometimes that can be enough
23:44
to start to bring the desire back into the relationship.
23:48
What's non -sensual touch for people who've never
23:51
heard of this? Yeah, I'm so used to saying non
23:54
-sensual because you can't say sex on Instagram.
23:59
But basically non -sexual. So, you know, hugging
24:03
without expecting sex, rubbing someone's back,
24:06
giving them a massage without expecting sex,
24:08
having a 20 second hug, resting your hand on
24:12
their leg, touching their face and giving them
24:14
a kiss or, you know, things that don't aren't
24:19
the wife or the husband aren't thinking this
24:22
is going to lead into sex right now. Gotcha.
24:25
Gotcha. Okay. So you've been talking a lot about.
24:27
touch starvation. And I'm very keen to know,
24:31
based on your personal experience and specifically
24:33
for your IBD clients, is there a major discrepancy
24:37
between genders, you know, male, female? Is it
24:41
pretty balanced? Based on my experience and my
24:44
clients, I would say that there are more men
24:47
who are touch starved. For instance, like...
24:52
Women are more likely, especially if they have
24:54
young children, to be constantly getting hugged,
24:57
having their child on their hip, having, you
25:00
know, their children touching them all the time.
25:02
In fact, a lot of mothers can be like over -touched.
25:05
Like, I just don't want anyone to touch me right
25:08
now, you know? And whereas like you won't maybe
25:11
see that as much with the father who's out of
25:13
the home and providing and not getting as much
25:18
of that kind of touch in his life. That would
25:22
provide a discrepancy there. Also, what I find
25:26
is that women maybe don't realize that they need
25:29
touch as much or they don't prioritize it as
25:32
much. So there's two kind of aspects to that.
25:36
One is where they have just, they've just...
25:42
use it or lose it. They haven't used it and they've
25:45
lost it. You know what I mean? They just, they
25:47
get so accustomed to not having it in their life
25:50
and they just get used to their life being that
25:51
way. And it's just, they don't think they need
25:54
it. But they don't realize how important it is.
25:57
And actually they're, you know, their likelihood
26:01
of getting sick, their likelihood of having any
26:04
kind of problems increases when they don't have
26:06
touch and intimacy in their lives. The one thing,
26:10
other thing is like women are more likely to
26:13
hug their friends. They're more likely to like
26:15
sit close to their friend and like cuddle and
26:18
watch a movie. They're more likely to have emotional
26:21
bonding with their friends. So women are experiencing
26:24
more intimacy that's not necessarily touch usually
26:27
than men. But like in my case, and in a lot of
26:31
people who are sick, you're not having those
26:33
bonding moments with your friends. You're not,
26:36
you know, you're not even being touched by your
26:38
children, whatever. So that touch could just
26:41
go completely out the window. Men, on the other
26:44
hand, they usually prioritize intimacy. And the
26:48
reason for that is because men access their emotional
26:52
connection and their bonding through physical
26:54
intimacy. So you're much more likely to have
26:58
a really emotional bonding conversation with
27:02
a man after you've had some physical intimacy.
27:06
Whereas women, we tend to like need that bond
27:09
before we feel desire. So kind of recognizing
27:14
those differences. And men, because they're so
27:17
unlikely to ask for help, their friends aren't
27:21
like giving them hugs. And so if their wife starts
27:25
rejecting them, they can internalize that as
27:28
something wrong with them. They start to doubt
27:32
their ability in the bedroom, and then they won't
27:36
ask for it. A woman, if she feels like her man's
27:39
not touching her enough, will usually eventually
27:41
ask for it. But a man is less likely. Once he's
27:45
been rebuffed a few times, he's less likely.
27:47
Or what could happen too is he doesn't understand
27:51
how to get his wife. in the mood or, you know,
27:55
get that kind of reaction from women. And so
27:58
he'll behave in ways that will actually push
28:00
it away more, you know? Well, of course, of course.
28:04
So you talked a little bit about, you know, your
28:08
own fears, potentially insecurities, especially
28:12
when talking about intimacy post -surgery. What
28:16
I... What are the most common fears that you
28:20
see people have before initiating intimacy post
28:25
-surgery? With ostomies, I think two big ones.
28:29
Will the bag fart? And will the bag leak? Those
28:34
are the two big ones to do with ostomies. And
28:37
I can quickly tell people how to handle that.
28:42
So if the bag farts, you just go, oops. put your
28:48
hand over it so it stops or so you can muffle
28:51
it and just go oops and then keep going pretend
28:55
it didn't happen after that because if you make
28:57
a big deal out of it out of it that's going to
29:00
make your partner uncomfortable that will it's
29:02
not the fart that's going to kill the moment
29:04
it's the it's your negative reaction that will
29:07
kill the moment so if you can act like it's no
29:10
big deal you're doing your partner a big favor
29:13
like huge You don't want to make them uncomfortable
29:16
by, like, being like, oh my god, I'm so embarrassed,
29:20
you know? Just think of all the weird noises
29:24
that happen during sex. Like, when we were young
29:26
kids, sure, we'd laugh, like, oh, but as we get
29:30
older, we're like, oops. And then with the bag
29:35
leaking, it usually doesn't happen, number one,
29:39
so. Don't worry too much about it. Number two,
29:42
if it does happen, the majority of people that
29:47
this has happened to report that their partners
29:49
were not grossed out. They weren't. It didn't
29:53
wreck their relationship. It didn't turn anyone
29:55
off. And I've actually had it happen to me. And
29:59
the person I was with just waited patiently while
30:03
I went. dealt with it in the bathroom cleaned
30:07
up yeah yeah and luckily for me it wasn't like
30:10
a big usually if something starts to kind of
30:13
go in that situation we could catch it before
30:16
it's a you know a big mess or anything so it's
30:19
not like it's the end of the world it's just
30:21
it's just like oh shit literally um i i gotta
30:26
go to the bathroom uh my bag is leaking and then
30:29
you go you change your bag you come back you
30:32
keep going Right, right. So what I'm getting
30:37
from this, what I'm starting to pick up from
30:39
based on what you're saying is that is it better
30:42
to just be frank, be straightforward, be candid,
30:45
potentially introduce a little bit of humor and
30:47
things will kind of take care of themselves?
30:49
Because it's still pretty tough, I think, for
30:51
people to imagine that, hey, oh, just being casual
30:54
will probably solve the problem. But that doesn't
30:56
necessarily reassure me, right? Because I might
30:59
be too embarrassed. Is it as... easy for people
31:03
as you described also like well at first you
31:05
kind of have to fake it right and if you're faking
31:08
it if you're faking it for your partner right
31:11
like ladies can understand this just just kidding
31:15
um but if you're like if you're faking it because
31:19
you don't want to make your partner or the other
31:21
person feel uncomfortable it's a little easier
31:23
you know if you know you're you're doing it for
31:26
them like yeah you i mean i've turned bright
31:28
red and went oops And then just keep going, you
31:33
know, like, yeah, it's, it's embarrassing. Right.
31:36
But if you remind yourself and also like, like
31:41
think of it from the other perspective, if it
31:43
was your partner and they had a bag and you're
31:47
in the middle of having some fun and their bag
31:49
farts and like, would, do you want them to start
31:52
crying about it? I mean, literally, I would have
31:55
started crying about it back in the day. So I'm
31:58
not laughing at people who do cry because I know
32:01
that feeling. But obviously, you don't want them
32:04
to. You don't. You just want them to feel safe
32:06
and comfortable with you and know that you're
32:09
not going to judge them. Right. I mean, in the
32:12
very unlikely situation, which it can happen
32:16
if you're with a very. not nice person you could
32:21
be with you could be with someone that's rude
32:24
or mean and and you could go through something
32:26
really bad because of that and if that's the
32:28
case i mean i can't help but suggest that that's
32:33
not your person you know of course yeah so you
32:37
you talked about the actual acts of intimacy
32:41
but getting there is a whole different story
32:43
so i'd like to ask you now if we look at this
32:47
From a practical point of view, what steps can
32:50
couples take to rebuild a certain level of intimacy
32:55
after long periods of IBD illness? Well, I'll
33:01
start with like when someone's sick, right? Because
33:05
when we're sick, people are scared. They don't
33:09
know if they should touch us. they don't know
33:11
if they can touch us, right? And sometimes they'll
33:14
touch us, and the way they're touching us, it's
33:16
either, you know, we can't handle it, or it's
33:19
too much, or it's too, it tickles, or it hurts.
33:22
I've created an intimacy guide for people with
33:25
ostomies, and I'd like to create one for the
33:28
partners of people with ostomies. And one thing
33:31
I would really like partners to do is just to
33:34
keep touching their sick spouse. keep touching
33:39
them even if they push you away sometimes find
33:42
out what they can tolerate if it's just a hand
33:46
on the leg in the hospital bed if it's like light
33:51
petting of the hair like give give them 10 minutes
33:54
if that's all you can give you know longer would
33:58
be great or more often maybe not even longer
34:02
sometimes when you're sick having touch for too
34:04
long is too much But often, maybe just a little
34:08
more often, very light, tender, kind touch. And
34:12
if they're like, that tickles, then you know
34:14
it's too light. But if they say, don't touch
34:18
me like that, don't give up. Don't give up and
34:20
just be like, fine, I'm not going to touch you.
34:23
Because we need to be touched. We just, we're
34:27
really fragile and our... sensitivity, like the
34:32
nerve endings of our skin are reacting differently
34:35
right now, we still need to feel like you care
34:38
about us. That's the main thing. And touch, even
34:42
just a little bit of touch, just a tiny little
34:44
bit of touch here and there when you're talking
34:48
to your spouse is going to make a big difference.
34:50
And then when, if you're trying to rebuild intimacy
34:53
in a relationship that hasn't had it for a long
34:56
time, Communication is really important, but
35:00
I feel like often what will happen is it kind
35:05
of backfires because in the moment, you know,
35:08
one person will say something and the other person
35:11
will take it the wrong way. Or there's just misunderstandings
35:15
because we don't really speak the same language,
35:18
especially in heterosexual couples. So what I
35:22
suggest and what I encourage. the person i'm
35:25
coaching to do is to start with the non -sexual
35:28
touch and just to increase that same kind of
35:32
touch like what I'm talking about if your spouse
35:33
is sick like just increase touch so in my case
35:37
I'm usually my most of my clients are the ones
35:40
with the disability and they're not being touched
35:42
anymore and they they start to internalize that
35:45
they feel like it's because of my ostomy bag
35:47
it's because I'm sick all the time it's because
35:50
I'm not lovable I'm not worthy anymore in my
35:54
partner's eyes and even if they don't verbalize
35:57
that in their minds it's how they start to feel
36:01
So it's kind of like hard sometimes for them
36:04
to say, well, I'm the one who has to do the work
36:06
now. And the work for them would be to start
36:08
increasing emotional bonding and non -sexual
36:13
touch in the relationship. So more long hugs,
36:16
trying to get them for like 20 seconds at least,
36:18
because that's when the hormones start getting
36:21
released that calm us and make us feel like we're
36:24
connecting to the person and we're bonding with
36:27
the person. So 20 second hugs, you know, cuddling
36:31
on the couch, foot massages, just touching, non
36:35
-sexual touching, legs touching when you're sitting
36:38
next to each other, things like that, building
36:41
that up. And then women, if it's like, if it's
36:45
a man, women really like to feel loved. like
36:50
loved like give give her tell her she's sexy
36:53
tell her she's beautiful pay attention to her
36:56
in crowds in front of people that that those
36:59
are the kinds of things that will make a woman
37:01
feel that bond that connection that desire um
37:05
that will bring her back and make her and it
37:07
makes her not want to do it to please you. It
37:11
makes her want to do it because she's feeling
37:12
in love with you, you know? So that's, that's
37:15
kind of the way to a woman's heart. With men,
37:18
it's really about validation mostly because men,
37:23
men are doing their best, but they're not getting
37:27
a lot of feedback on it, I feel like. So appreciation
37:31
for like how hard they work and saying thank
37:35
you. And also, once you are in an intimate situation
37:42
with a man, being open to your own pleasure,
37:47
being unafraid to let go, you know, because that
37:54
that's what really gets like men. Their biggest
37:57
thing in the bedroom is like, how is she enjoying
38:01
this? Women are like, does he think I look fat?
38:04
You know. oh my God, he touched my stomach. He
38:07
touched that roll on my stomach, you know, or
38:10
something. That's the kind of thing that a woman
38:11
will think that will take her out of the moment.
38:13
And men will be taken out of the moment because
38:17
they're like, am I pleasuring her? Is she happy?
38:19
Is this working? Am I doing it right? And a lot
38:23
of women don't realize it, but they're just too
38:25
quiet, you know? Like just a little bit of feedback
38:29
would make a big difference in their relationships,
38:32
you know? And they'll see that being Having a
38:36
little more verbal communication in those encounters
38:41
actually can make it so much better. But people
38:44
don't realize that because they fear to make
38:47
noise. They fear to make a funny face. They fear
38:50
to bend forward and have their stomach hang or
38:54
their, you know, all the normal things of being
38:57
human. But it's like instead of being in our
39:00
fear, we need to get into our connection. Instead
39:04
of focusing on does this person like what I'm
39:07
doing or does this person like me, we should
39:09
be focusing on how can I connect with this person.
39:13
And then the connection is what will lead to
39:17
the really amazing encounters, right? Right,
39:21
right. When you began your answer, I sort of
39:25
started to get this feeling that you certainly
39:27
favored the touch more than the communication.
39:32
And you mentioned it, you said communication
39:33
is important, but, you know, because to most
39:36
of us, we always hear about communicating. Communicating
39:39
is so important. It's so crucial, right? But
39:41
then, you know, towards the end, especially when
39:43
you're talking about men, we talk about men,
39:45
you know, giving compliments to women, you know,
39:46
those are verbal responses and verbal affirmation.
39:50
So there is communication there, right? So what
39:53
I just want to make sure is that, and correct
39:56
me if I'm wrong, but... favoring touch is probably
39:59
a good starting point, but you don't give up
40:02
on communication entirely, right? There are aspects
40:05
of communication that are important, right, to
40:08
maintain. I mean, I think communication is like
40:11
the most important thing, honestly. But the problem
40:15
is how we're communicating. And often when we're
40:21
communicating, especially about this subject,
40:24
feelings get hurt really easily. Or we say things
40:29
in a way that the other person takes it different
40:32
from how we actually mean it. And it just, like,
40:35
for instance, like, imagine a man saying to a
40:38
woman, like, I can't live without sex for the
40:41
rest of my life. You know, like, when can I expect
40:45
to have sex again? like I've been cleaning dishes
40:48
every night for a week I just bought you that
40:50
beautiful ring I you know I I work my ass off
40:54
for you like and you don't won't even give me
40:56
sex you know and like a woman isn't going to
41:01
respond well to that that's communication but
41:04
she's going to feel hurt she's going to feel
41:06
upset she's going to that she's going to blame
41:08
you Yeah, but what about when you were criticizing
41:11
me for making that meal the other night? You
41:15
know, or whatever, right? So in that way, communication
41:20
has to be done delicately. It has to be done
41:25
in a very vulnerable, open way. And I think understanding
41:30
your partner. better can help you do that. Because
41:35
if you don't understand why they might be pulling
41:38
away, um, and, and the reasons are usually pretty
41:41
typical in any situation. So it's not like, um,
41:45
it's not like it's different for people with
41:47
disabilities. We just feel like it's different
41:49
because we feel like our disability is what's
41:52
making someone not want to touch us, you know?
41:56
Of course. Of course. So obviously to be able
41:59
to be comfortable with intimacy and acts of intimacy,
42:03
You kind of have to be comfortable with the body
42:05
that you live in. You know, IBD surgeries, ostomies,
42:10
it really does mess with the body image of the
42:14
patients. What do you wish that people would
42:19
understand better about a body that changes because
42:24
of IBD? I think one of the biggest things that
42:28
I wish... that people would understand and I
42:32
really highly promote to all my clients. People
42:37
who can't have penetrative intercourse often
42:43
just give up. They give up. No one's ever going
42:46
to want to have sex with this limp. you know
42:49
or no one you know no man's ever going to want
42:51
me because I can't do it so this this is like
42:55
extreme these are people like they they fear
42:57
they're never going to be able to have penetrative
42:59
sex again and that means they can never have
43:01
intimacy again and then there's the people who
43:04
can do it that way but that's all they do let's
43:10
get in there get out of there you know And so
43:15
I like to promote a middle ground. If you can't
43:18
obviously do penetrative sex, you find what you
43:22
can do that works for you as a couple. But I
43:25
like people to set aside a whole hour with no
43:30
distractions, no phones, have some ambiance.
43:34
Did I say that right? Ambience, ambience. Absolutely.
43:37
No, ambience, yeah, that's great. And then spend
43:40
a whole hour like dedicated to just naked hugging.
43:46
Naked hugging. Naked hugging. Naked hugging,
43:48
talking. Maybe you do make love, but if you do,
43:51
don't walk away. Make sure you stay there for
43:55
the full hour, you know, and dedicate that time
43:59
to physical and emotional bonding. It builds
44:02
the bond, right? Once you build the bond, like
44:06
men, like we said, are more likely to be communicative.
44:10
They're more likely to communicate and tell you
44:13
their deepest fears and longings after they've
44:16
experienced physical intimacy with you, because
44:18
that's what releases the bonding hormones in
44:20
men. But women need that conversation and that
44:24
eye contact and the words of... affirmations
44:31
of like beauty, you know, and desire, like you're
44:34
so sexy and you look so good tonight and I love
44:37
you in that dress. And so if we're lying there
44:41
for a whole hour naked hugging and saying nice
44:44
things to each other, it's pretty incredible
44:48
what you can come out of with that. And it can
44:52
be, it doesn't have to be like rules around the
44:55
conversation or anything. You know, right. As
44:58
long as nobody is the conversation police and
45:01
everybody is respectful and kind and loving.
45:04
You get through that whole hour and you walk
45:08
out of the bedroom smiling or whatever room you're
45:11
in. And it's just such so important. And it's
45:15
so sad that I see so many women, especially who
45:18
have kind of given up on intimacy in their relationships.
45:21
And so many men who are like, what am I going
45:24
to do now? I still believe that there's this
45:28
cultural obsession out there with flat stomachs,
45:32
right? And now we're looking at IBD and ostomies.
45:35
It's not just a bag. It's scars, right? It's
45:38
potentially, you know, bloating. How do you think
45:41
that it hits women with IBD and ostomies differently?
45:46
I think there is an obsession, just like you
45:48
say, especially in popular media with having
45:51
like a perfect stomach. Like every time a celebrity
45:54
has even a little bit of bloating there, you
45:57
know, are they pregnant? Do they need to lose
45:59
weight? So that kind of pressure is definitely
46:02
on women coming from the adult entertainment
46:04
industry where like I had like this perfect flat
46:07
stomach. I was pretty devastated when it was
46:10
gone. And now I do. I struggle with clothing
46:13
choices like I want. Do I wear? something that
46:16
if my bag gets a little bit of air in it or anything
46:19
that it won't be noticeable or do I just keep
46:22
my eye on it all night so I can wear this really
46:24
cute slimming dress so those are definitely considerations
46:28
and it is hard then that's one of the things
46:31
I'm trying to do by showing pictures of me half
46:34
naked on my socials is to show my scars and show
46:39
my bag and and it was hard I mean people say
46:42
I make it look easy but it It's scary. It's scary
46:46
to just expose myself like that. But I do want
46:51
to normalize a little belly. I do want to normalize
46:55
scars and a bag. But especially the belly, because
46:59
every woman has a little bit of a belly as they
47:04
get older. You know, and even some of the young
47:07
women. I mean, that flat, youthful stomach that
47:11
we had before we had babies and before our surgeries
47:15
and before we got older, even if we didn't have
47:17
surgeries, they're not going to be there forever.
47:19
I mean, there are a few lucky older women you
47:22
see that are just like buff. There's always a
47:25
few lucky ones. Yeah, there's always a few. But
47:29
the majority of us, we got a little bit more,
47:31
you know, cushiony in the different places. When
47:36
you have some people like me and other ostomates
47:40
and other people with different bodies being
47:44
comfortable and proud of how they look and being
47:47
confident. And when you see other people responding
47:52
to that positively, then it gives you more courage.
47:55
And I have to say, and I have to admit this,
47:58
as much as I hate social media. Now being very
48:02
active in this field, especially also, you know,
48:05
in my mission to raise IBD awareness, I am, it's
48:09
really beautiful to see, you know, people like
48:12
you and many more, especially women and men also,
48:16
who actually are not afraid or no longer afraid
48:19
to show their ostomies, to show their bags, right?
48:23
To show themselves in bikinis. And, you know,
48:26
I talk a lot about, I mean, we're not even going
48:27
to dive into social media and insecurities related
48:30
to social media with, you know, what people are
48:32
posting. But, you know, when I see estimates,
48:35
you know, sort of like just probably displaying
48:37
themselves on social media and, you know, you
48:40
actually take the time to read the comments,
48:42
dive into the engagement. It's all about hope.
48:45
It's all about inspiration. It's all about finding
48:47
security. So there seems to be a movement. into
48:51
very positive directions with people, men and
48:53
women, becoming more comfortable and sort of
48:56
really leading this inspiration to be okay with
49:01
that new body that you find yourself in, right?
49:04
And that's something beautiful to see. It helped
49:07
me a lot. It did. It helped me a lot. And something
49:10
I've also learned from doing my coaching is about
49:13
how people who have been like poked and prodded
49:17
our whole lives, it's very empowering for us
49:19
to kind of take back control of how we show our
49:22
bodies to people. And so in the process of doing
49:26
photos and videos and exposing our bodies with
49:31
our bags, we're actually taking back some of
49:34
the control that we feel we've lost over our
49:36
own bodies. Absolutely. Absolutely. So as we
49:40
now come to closer to the end here, I want to
49:44
finish with a few thoughts on empowerment, but
49:47
also a couple of practical takeaways when it
49:49
comes to body and intimacy, especially in the
49:51
context of IBD. So tell me from you, the intimacy
49:57
coach, what is one key mindset shift that you
50:01
want every IBD patient to try? I mean, my biggest
50:07
thing is the visualization. And it's where you
50:10
literally imagine yourself living out all the
50:15
things that you fear. But in your visualization,
50:19
it all goes perfectly, perfectly well. Absolutely,
50:24
100 % awesomely well. And you just keep visualizing
50:28
that. And it's amazing what a difference it makes,
50:31
like a huge difference. And then self -talk,
50:35
I always have to mention. Self -talk is where
50:38
everything begins. It is. So if I come to you
50:43
as somebody who's very timid and kind of embarrassed
50:45
and I asked you, okay, but in one or two sentences,
50:52
how do I start visualization? Just like, how
50:55
do I do this? What would you tell me? I would
50:58
say, sit down, close your eyes. And then imagine
51:03
a future scenario of the thing that you fear.
51:08
So for me, for instance, I was scared of what
51:11
it would be like to make love with an ostomy
51:13
bag. I was scared I wouldn't be able to dance
51:16
or go swimming or stand in front of a crowd and
51:19
speak because what if it farted? I had all these
51:23
fears before I had the second. the second surgery
51:26
but when I visualized myself doing those things
51:30
with the bag and everything went fine in each
51:34
of those scenarios after a very short time of
51:38
doing that just closing my eyes for five minutes
51:41
or less a day and I even had a soundtrack I recommend
51:44
having a soundtrack like something that you feel
51:46
music that you feel empowered by and you listen
51:50
to it while you visualize that. And I recommend
51:53
having a script. So you do it exactly the same,
51:56
the same visualization every time. So you're
51:59
putting yourself into the same situations every
52:02
time. And they might change slightly, but every
52:05
time it comes out fine. And you don't let any
52:08
bad come into your visualization. So you're not
52:10
in the middle of making love with a bag and then
52:12
it leaks. No. Sure. No, no, of course. Give me
52:17
the same brief step -by -step for self -talk.
52:20
Self -talk is, first of all, catching yourself.
52:24
And a lot of people don't think their self -talk
52:26
is that bad. When I first say, you know, tell
52:28
me about your self -talk, they're like, it's
52:30
not that bad. But then when they start to pay
52:33
attention, they start to realize, oh, wow, yeah,
52:36
I do say a lot of negative things. Like, I can't
52:39
do that. I'm too tired. I'm too sick. I'm not
52:42
going to be able to. I'll never be able to. So
52:45
all that negative self -talk, start to catch
52:49
yourself. And when you catch yourself, stop and
52:52
change it to something the opposite. And it's
52:55
okay if the opposite sounds ridiculous. You know,
52:59
if I'm like walking through the house and I bang
53:01
my knee on something and I go, oh, I knew that
53:05
was there. I'm so stupid that I stop and I go,
53:09
I'm not stupid. I am incredibly intelligent.
53:13
I'm the smartest woman on the planet. It makes
53:16
me laugh. It rewires what I've just told my subconscious
53:21
because our subconscious believes anything we
53:24
repeatedly tell it. And so and then it gets me
53:28
in a good mood. So I'm also having a positive
53:30
emotion with that, you know, positive self -talk.
53:34
And if you could catch yourself and do that every
53:36
time you catch yourself, it makes such a big
53:40
difference. Like you might spend, it might take
53:43
a long time for you to be able to stop yourself.
53:46
from saying the negative things you might catch
53:49
yourself halfway through you might catch not
53:51
even be able to catch it till you've already
53:53
said it eventually you'll catch yourself before
53:55
you say it but it takes learning to catch yourself
53:59
and then saying the positive and then the other
54:02
part of it is to have like a list of affirmations
54:06
of all the things that you actually want to believe
54:08
about yourself and just reading it every day
54:10
I mean, it makes such a big difference. Like
54:12
I used to, I've had the same affirmations for
54:15
years and now I can look at my affirmation list
54:18
and I actually believe almost everything on that
54:21
list. You know, one of the things I don't believe
54:24
is I'm a billionaire. That'll come later. Oh
54:29
boy. But you know, like I do feel like I'm charming
54:33
and I do feel like I'm irresistible. But I didn't
54:40
feel that way when I started my affirmations.
54:42
And they're so, so fascinating that we can program
54:47
our subconscious to believe whatever we repeatedly
54:51
tell it. It really is amazing. Like you just
54:53
said, you didn't feel irresistible at one point,
54:55
and it took a journey to get to the point where
54:58
you feel it. So now, based on your... IBD journey
55:04
based on your experiences, based on the work
55:07
that you do as an intimacy coach. If you look
55:10
back, what is one thing that you wish you had
55:14
been told earlier about IBD in your journey?
55:18
I guess, honestly, I think it really relates
55:22
to my purpose of trying to help people with touch
55:26
starvation. I wish that someone had told me that
55:29
touch is a need, not a want. Because babies can
55:35
literally die without it, and just because we
55:38
grow up and become adults doesn't mean we don't
55:40
need it anymore. And then I would have maybe
55:44
made more of an effort to have my touch needs
55:47
met, or at least understood why I was feeling
55:53
the way I was feeling. Because when you're not
55:56
touched for a long time, you might not consciously
55:58
realize it, but you subconsciously... Begin to
56:02
believe that you're not worthy of touch. And
56:05
that can have really devastating impacts on your
56:09
self -esteem and your health. Your final message
56:13
to someone who feels unlovable because of Crohn's
56:19
or colitis. You are not unlovable at all. You
56:23
were put on this earth to be here and learn and
56:29
you have a purpose. You're not dead yet. That's
56:33
how I know. If you weren't supposed to do something
56:37
or be someone, then you wouldn't still be here.
56:40
So get off your ass. Stop feeling sorry for yourself.
56:45
And get to work on whatever your purpose is.
56:48
And if you can't do that without a little help,
56:51
I'm here for you. Reach out. That's a perfect
56:55
way to wrap things up. Trina, thank you so much
56:58
for sharing your insight, for sharing your experience.
57:05
coaching, but you're also active on social media.
57:07
You're also podcasting. We're going to put all
57:10
of that information in the show notes as well
57:13
for our listeners to find you and seek you out.
57:16
I wish you nothing but the best on your continuing
57:19
journey. I think the insights that you provided
57:21
today are really, really fascinating to me. And
57:24
I think you'll agree with me and I don't want
57:27
to put words in your mouth, but... Intimacy is
57:30
not talked about enough, especially in relation
57:31
to chronic illness. And I think the conversation
57:34
today will at least kickstart some thinking or
57:38
critical thinking. I think a lot of people that
57:41
are going through body change and potential insecurities.
57:46
So thank you so much for sharing your insight
57:47
again. And I wish you nothing but the best. You
57:51
as well. Thank you for having me. This has been
57:53
wonderful. That's it for today's episode of Colitis
57:57
Unfiltered. I'm Frank Klebering, and if this
58:00
hit home or hit your gut, do us a favor. Subscribe
58:03
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58:07
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58:10
and Reddit. We'll see you soon for more inspiring
58:13
stories from the bathroom floor.