I wasn't really familiar with ulcerative colitis.
I mean, I knew of it, but I didn't know the ins
and outs of it. And the doctor was like, oh,
you have ulcerative colitis, come back in a couple
of months, let the dust settle. And like really
wasn't. overly informative or overly tactful
for the diagnosis. So I was kind of left on my
own to sort of digest it and take it all in and
figure it out. This is Melissa, who got diagnosed
with ulcerative colitis at age 46 in Boston,
Massachusetts. Melissa's journey is one of inspiration.
Not too long after her diagnosis, doctors recommended
she have surgery to remove her colon. But Melissa
refused. She was not ready to let go of her intestines.
Today, she's telling us all about her IBD experience.
This is Talking S*** presented by Colitis Unfiltered.
My name is Franck Tabouring and Melissa, welcome
to the show. Thank you, Frank. Glad to be here
today. So let's get right into it. I think, you
know, what's really easier for the audience is
to maybe set a little bit of a context. So it'd
be great for you to maybe give us a very brief
summary of your IBD journey, you know, from diagnosis
to today. Tell me a little bit about your timeline.
So going back, I was first diagnosed in 2018.
And I first started having symptoms of diarrhea,
urgency, and was really quite sick and was hospitalized
for about 12 days. And I was treated with IV
antibiotics, like I had a parasite or something.
And it wasn't until the last day where they did
a colonoscopy on me and they said I had ulcerative
colitis. And I was literally sent home to let
the dust settle. And I had lost a ton of weight
and progressively got more and more sick where
I was blacking out. Led me to go see another
doctor for another opinion. At that point, my
hemoglobin and hematocrit were at critical low
numbers and I needed blood transfusion and was
hospitalized again. And I was then started on
some IV Remicade. and that eventually ended up
not working for me. And then I went advanced
to another medication called Intivio. That didn't
work. I eventually then went to a third opinion
and found another doctor who was really not afraid
to push the envelope and do a combination drug
therapy to try to knock me into remission. And
that was really what set me straight was this
third doctor. So it was like a very long journey
to get stabilized. And in the meantime, everybody
wanted to take my colon out. When I was hospitalized,
and when I was hospitalized, it was days at a
time, I'm talking 12 days in the hospital, and
they were all at my bedside, ready to remove
my colon. And I wasn't having it. I didn't want
to have my colon out. I thought I was young.
If there's another way out, By golly, I was going
to fight for it. And I did. So anyways, I found
my way, found the right doctor, found the right
remedy, the right prescription, and was able
to get stabilized. But it took a long time. It
took a couple of years. So you said that, you
know, the symptoms just showed up. Like, how
did you realize something was wrong? The diarrhea
that I was having was not like I had a bug. or
like a stomach flu, something like that. There
was urgency, the consistency. Then I started
rectal bleeding. And so it wasn't long where
I'm like, oh boy, what's going on here? This
isn't normal. This isn't a normal type of bug.
And I was really wiped out, exhausted, where
I was flat lying and couldn't lift my head. I
was literally brought out in an ambulance. Wow.
One thing that I sometimes think about is this
very moment where, at least for me, I was sitting
in the doctor's office and he broke the news
to me, right? He said, I'm afraid it's not good
news. You have ulcerative colitis. And to me,
so many questions popped into my head. I was
like, wait, what? So I want to ask you, whatever
physician diagnosed you, how did he or she break
the news to you? And also when you heard this
term ulcerative colitis, what went through your
mind? Wasn't really familiar with ulcerative
colitis. I mean I knew of it I but I didn't know
the ins and outs of it and at the time I had
been so sick and was hospitalized not knowing
what it was Part of me was like a relief that
it wasn't cancer You know cuz I didn't know what
it was and then the ulcerative colitis was like
I Was a little overwhelmed at first to be honest.
I you know, I had to you know Take it back and
it was the doctor was like, Oh, you have ulcerative
colitis. Uh, come back in a couple of months,
let the dust settle. And like really wasn't overly
informative or overly tactful for the diagnosis.
So I was kind of left on my own to sort of digest
it and take it all in and figure it out. So,
uh, it wasn't a great experience in many ways
on many levels. Right. So basically. the first
time you heard the term, the doctor didn't necessarily
go into details and explain to you, hey, this
is an inflammatory bowel disease, nothing really,
just said, this is it. No, it wasn't until I
got to the second doctor that I really got some
great information. I think this is a common problem
for a lot of people with colitis. At least the
stories that I hear is that either doctors write
it off or they just write it off as IBS or they
don't really follow up. Personally, Because you're
working as a nurse as well, right? Why is it
that doctors don't really take the time or don't
really listen to the patient and become more
proactive right away? Well, I can tell you one
thing that I encountered is that there's gastroenterologists
that are general gastroenterologists, and then
there's gastroenterologists that are specialized
in IBD. And that makes a whole world of difference
because, you know, The guy I saw first he could
been a specialist in in reflux disease, you know
or saw everything But does he really you know
live and breathe ulcerative colitis and Crohn's
disease on a daily basis? No, you know, he's
because he's a general gastroenterologist I did
not believe he knew the ins and outs of the ulcerative
colitis So it really took finding someone that's
super specialized in inflammatory bowel disease
to sort of treat someone, you know, the best
way possible. You mentioned at the beginning,
but could you quickly take us through the types
of medications that you went through sort of
and which ones worked and which ones didn't work?
Yeah. So at first I was on mescalamine. Then
I went to Remicade. Then I went to Intivio every
eight weeks. Then when I got to the doctor that
was the specialist in IBD, She put me on Zeljanz
in conjunction with Antivio every four weeks.
And it was that combination of those two medications
that really knocked me into remission. So then
I was able to wean off of the Zeljanz and maintain
the Antivio. And that's where I'm at today is
on the Antivio. But I went have recently gone
from every four weeks to every six weeks. That's
great. Antivio, that's exactly the treatment
that I am on now. And for me also, it's been
the most stable one. Very glad to hear that this
is the one that keeps you in remission and that's
actually the one that keeps me in remission right
now as well. I was on prednisone too during in
-between while I was finding the right doctor.
I was taking prednisone like crazy because it
was stopping the bleeding and I was taking it
totally against medical advice. But I was so
afraid to have my colon out. I was like, if it's
going to stop the bleeding and buy more time
till I can find the right doctor and get the
right answer. I was doing that, you know, which
is not good to be on long term steroids. Exactly,
yes. And I mean, I always personally refer to
prednisone as sort of a blessing and a curse,
right? Blessing because it can help you short
term, but curse, you know, all the side effects
and what it does to your body. How did you experience
the prednisone? Did you have very notable side
effects? This is a question that a lot of people
with colitis that I talked to and they struggle
with prednisone. What was your experience being
on that medication? Yeah, I mean, the ulcerative
colitis has brought so much you know, with body
image. I mean, there was one point I had lost
a lot of weight because everything I was, you
know, consuming was going right through me. And
then when I was on long -term prednisone, I had
like a 30 pound weight gain. I had, you know,
hair loss. I had weight gain. I had mood swings.
I mean, yeah, not good side effects, but it saved
me because I was stopped bleeding and it bought
me some time. So you're absolutely right, the
blessing and the curse. You mentioned earlier
that you were advised or was recommended to you
to just remove your colon to beat this disease
essentially, and you refused. What did you do
mentally also for yourself in refusing to go
that route? When the first doctor told me to
go home and let the dust settle and I had gotten
progressively worse and made it to that second
doctor, He admitted me right away into the hospital.
I needed blood transfusions. And he basically
told me, I never would have let you out of the
hospital in this condition, you know, back from
the first doctor. And he basically said, you
know, that they didn't do enough for me. It was
like a fire extinguisher and a forest fire. You
know, they just did not. you know do enough for
me and he said that I had severe pan colitis
which is colitis in the whole entire colon so
there was not one section of my colon that was
saveable and that I really was a candidate to
have the the colon out and that I should really
consider it and uh you know I said well I don't
want to do that and that's he started me on the
remicade and you know it wasn't long because
I was on the remicade only a few months and he
said It was it stopped working. I started having
like the breakthrough bleeding and symptoms came
right back within a few months and he says well
I can start you on in tibio but really you should
have the colon out and I I had a very hard time.
I had a very very hard time, you know digesting
that like what's gonna happen to my life? I was
only 46 years old. Is that necessary? Is there
anything out there that can you know get me out
of this? And I just kept pursuing. I'm like,
I need another opinion. I need to find another
doctor. And it turned out that doctor one was
not an IBD specialist. Doctor two was not an
IBD specialist. The third one was. And by the
time I got to her, she said, yes, you have a
very severe case, but she was willing to sort
of, you know, try things out and do some experimentation
with the medications to see if I couldn't get
to a remission where I had a chance of not getting
my colon out. It's remarkable that you actually
stuck with your opinion and you didn't listen
to the doctors. And I understand that a lot of
colitis patients out there, they get diagnosed
at a stage where they actually don't have any
other option anymore. And I think, you know,
again, you know, sort of this lack of sort of
subspecialty maybe is coming into play as well.
The same thing happened to me and this was while
I started on Remicade and after about a month
or two, it didn't really work quite yet. I was
feeling better, but my doctor basically told
me, listen, if this doesn't work, this is maybe
something that we should consider, right? Surgery.
And I still remember to this day, I was actually
sitting ironically enough on the toilet and I
sort of processed everything and I said, no.
And I just said, this is not going to happen.
So over the years, I thought to myself, Listen,
everybody always talks about sort of brain -gut
connection, right? And I'm the first one to say
that certainly the medication, the treatment
was what pulled me into remission. But I always
said, I think the mindset sort of keeping that
strength, it probably helped a little bit. I
don't want to say that it sort of kept me from
using my colon, but What's your stance on sort
of like using your mind and having just sort
of, I don't know, either positive mentality or
fighting spirit and how it can help somebody
through, through struggles. Oh, I'm all about
it. Do you believe that? Absolutely. The perseverance,
the determination, you know, I also, you know,
it had a lot of stress in my life. So I, you
know, I meditation yoga, then I got into, you
know, diet. changes. And, you know, certainly
I will never discount my gastroenterologist that,
you know, saved me and all the wonderful things
that, you know, the medicine field is doing,
but they were not into diet recommendations.
I can't tell you how many times I was told you
can eat a regular diet. It's autoimmune. You
can do what you want. It doesn't matter what
you eat. You have your colon's failing, you know,
get your colon out. But I got to tell you when
I did all of those things, the stress management
and, and the food changes, you know, and, and
the mindset things started, you know, to turn
around. So, um, I'm a firm believer in all of
those things to that, you know, we, we, our bodies
can heal ourselves and, and there's a lot of
things that you can do. Yep. Yep. I think it's
a really good combination of having that fighting
spirit, the mindset, and then the right doctor,
the right treatment plan. And, uh, you actually
have a, worthy shot of experiencing remission
and staying in remission. So speaking of remission,
actually, once we get better, once we heal, even
though we know it's not a cure, so we should
never take remission for granted. A lot of us
we sort of reflect on our choices we make in
life, especially to our bodies. What sort of
lifestyle changes have you made, you know, since
remission or what lifestyle changes have helped?
you better manage your disease. Yeah. I mean,
that's a great question. You know, and this is
one good thing about this whole IBD journey for
me is that it put me in a place where I am ultra
conscious about my sleep, my stress, my diet,
all of those things I am, you know, ultra conscious
on a daily basis. So that's a good thing, whether
you have IBD or not, right? So that's been sort
of the blessing here is being have this conscious
contact about wellness on a regular basis. How
has this disease changed you as a person? Well,
I've learned not to take anything for granted.
Health is wealth. I mean, What if you know when
you have like a close call like that and you're
hospitalized, you know for days on end I mean,
I wasn't working. I wasn't I wasn't near family.
I was away at a hospital. I mean so really, you
know Not taking anything for granted and and
really prioritizing health Without that, you
know, what have you got I basically prefer to
as my IBD journey, where we're actually the actual
disease is a blessing and a curse as well, right?
Curse because we suffered a lot, but then a blessing,
it just sort of allows us to revaluate our lives.
How do you relate to that, that IBD being both
a blessing and a curse? Does that resonate with
you? It totally resonates and probably very similar,
you know, to you. The curse is definitely All
of the suffering. I mean it was it was so stressful
navigating the health care system the doctors
Finding the right medication, you know, and then
all the physical suffering. I mean I had You
know weight loss. I had weight gain. I had hair
loss. I mean You know the fatigue, you know,
I had low iron levels all of that stuff I mean
that that was definitely, you know the curse
and and and having this, you know disorder and
disease and then of course, you know On the flip
side, the blessing, I have learned so much about
the disease. I'm able to help other people. I've
learned about diets and foods and supplements
and wellness. I don't think I ever probably would
have tried doing yoga or meditation prior to
this. So there's a lot of blessings. That's great
to hear. You mentioned when you were at your
worst, you sort of were not able to be around
family so much. How has the disease, especially
also when it was active, impacted your relationships
with your friends, with your family? And also
how did they react? And I'm sure they didn't
know much about ulcerative colitis either. Was
it difficult for them to understand the disease?
How did you communicate with them? What was that
like for you? Yeah, that was a little challenging.
I'm one to isolate. I don't want to talk shit
with everybody. So it was a little challenging.
It's not like you could say, oh, I'm diabetic.
It's a lot easier to say something like that
than to say, I have diarrhea. I mean, I guess
that caused a little bit of separation and a
little bit of a barrier with, you know, talking
to people and communicating. You know, people
say, how are you? And it's like, you know, you
don't want to say, oh, well, I went to the bathroom
10 times or I'm bleeding. You know, those are
not things that you necessarily want to talk
about. And it becomes challenging to have conversations
about your health, you know, even when it's with,
you know, close friends and family. It's sometimes
was challenging. Yeah, you mentioned the word
isolation. And I think that's definitely also
something that happened to me when I was flaring
and I was at my worst. I actually wanted to be
alone. I sort of retracted into my own bubble
and wanted to suffer basically by myself in silence.
So yeah, how did you navigate your flares? And
did you also experience this sort of isolated?
feeling or not wanting to be close to anybody.
Yes, I absolutely did. I mean, I wanted to be,
you know, home. I wanted to be near the bathroom.
I certainly didn't feel social, didn't feel like
having fun, didn't want to go out. I mean, when
I, during a flare and to go out, I mean, that's
if I had to go somewhere, I'm packing a change
of clothes and thinking ahead about where's the
bathroom and how long am I going to be and how
long is the drive? And you know, so I didn't
want to deal with any of that. It was just like,
leave me alone. I'm not going anywhere. I'm not
talking. I'm not doing anything. We don't have
the energy at that point to actually do anything
or literally care about anyone else but ourselves,
right? So it's one of those moments where it's
actually okay to be very, very selfish. And I
always advocate for that, you know, take care
of yourself first, and everybody else has to
wait, right? So what advice would you have for
people like friends and family supporting someone
with IBD, someone that is entering a tough stretch
or is flaring constantly, what would you tell
these people who are around the person like that?
I would say not to ask too many questions, let
them know that you're there for them and support
them and ask them to let you know if there's
anything that you know, that they that you need,
you know, and provide space for that person if
you're getting the feeling that they want to
be alone, that that's okay. And I think that
that's helpful to know both for the person that
has the ulcerative colitis to know that people
are there for you and they're only like a phone
call away without being overly intrusive about
what's going on and what the status is. I think
the best thing that people can do is let you
know that they're there but that actually wait
for You know us to reach out to them. I think
that that's the best sort of support that that
they can show right? So one of the reasons why
I started this initiative and why I also want
to raise awareness about Colliders Crohn's IBD
in general is I think there's a lot of common
misconceptions still out there. There's a lot
of stigma. There's actually a lack of awareness
based on what you have experienced. What are
some common misconceptions in your eyes about?
colitis or IBD in general. I think people don't
understand that as like a long -term chronic
illness or that it's, you know, autoimmune. I
think a lot of people confuse IBD with IBS and
they don't, they just don't really understand,
you know, the complexity of it. What do you think?
Besides just trying to raise awareness and talk
about it. Do you think there's anything else
that we could do to educate people better? You
know, I've seen a lot of activity more recently
in the past year than in years prior like from
the Crohn's and colitis foundation I see them
doing a lot of marketing a lot of publicity a
lot of events to raise awareness I think there's
a lot, there's a movement. I see people on TikTok
and other social media platforms that are very
open, people that, young girls in bikinis that
have colostomies. I feel like there's a lot more
openness about it. So I feel like there's a movement
out there that's going in the right direction
to help people understand. And so today, we've
kind of arrived at the present now. How are you
feeling? You feel like you really have this disease
under control for now? Are you feeling good?
Do you feel strong again? Like, how are you feeling?
I feel great. I feel great now. You know, the
ulcerative colitis is in remission. I've recently
been able to decrease my doses of the Antivio.
I have my mental health things that I do. I have
my diet that I follow. So yeah, I'm feeling fabulous
and back to normal. That's really great to hear.
Yeah, that's great. Perfect. So I have two questions
for you before we wrap this up. We were actually
talking right before we started recording a little
bit about The difficult healthcare system, specifically
United States, you were diagnosed there. I was
diagnosed there and I suffered through my worst
in the US as well. And, you know, one of the
things that my doctor always told me was, Oh,
you actually have very good insurance. And I
thought, Oh, that's interesting. Great. But then
oddly enough, the bills for the Remicade treatments
showed up and I looked at the number and it said,
$20 ,000 and show what the insurance would take
care of. But then I saw amounts in the thousands
of dollars that I would still have to pay out
of pocket. So healthcare, this is one of the
issues. Insurance, another issue where people
who are newly diagnosed tend to struggle with
sometimes, not just in the US, but mainly there
as well. I think other struggles that people
are experiencing is diet and how to handle that.
And you and I both talked about this. You're
sort of having an initiative that you're launching
or in the process of launching in terms of trying
to help people as well, right? Like, or coach
them. Can you tell me a little bit about what
your initiative is and what you're doing or planning
to do in those fields and trying to help people
out? Yeah, so I'm a nurse by background. I have
spent many years actually working in the insurance
industry. But I was also had many years experience
as a case manager and doing motivational interviewing.
So I am between my lived experience, personal
and professional experience. I am opening it
up to help people that are out there suffering,
that need help navigating the health care system,
that need help setting goals and making changes
in their lifestyle. And so, you know, I feel
like you know, I can give back and I'm looking
forward to doing that. So I'm, you know, have
my sub stack open and for anybody that wants
to, wants to reach out, I can provide individualized
coaching sessions or consulting. Perfect. I'm
going to put that link as well into the show
notes so that people can quickly access that.
So then Melissa, my final question for you is
one looking into the future. And this is how
we want to we want to part. Do you think we'll
see a cure to colitis in our lifetime? Oh, I
know there's already been so many advances, even
since I was diagnosed seven years ago in the
medications. If you go on TV, there are so many
new medications out there that it's just unbelievable.
As far as a cure goes. Hmm. That's difficult
to answer. I know things are going in great directions.
but it seems to be going in the big pharma direction.
As far as curing autoimmune disease, I don't
know. That's a really tough question, a great
question. You got me stumped on that one a little
bit, but I think it's a holistic thing. I mean,
autoimmune, pardon me, I can't help but think
it's triggered by stress. you know, by our diets.
There's a lot to this. And I think it's a question
that we honestly can't really answer, but I'd
like to ask it because, you know, we all have
sort of our mindset and most of us, at least,
you know, who've been living with the disease,
who are in remission, we'd like to have this
positive outlook, right? And as much as I myself
would love to see a cure, I think the more treatments
we can find, the better people have a shot at
Going through a prolonged maintenance and remission
of the disease as well. So I think progress is
being made there. You're absolutely right. Well,
Melissa, thank you so much. This has been a really
fascinating conversation and I really want to
applaud you as well for wanting to share your
journey. I think this is really one of the key
elements that we need in raising awareness. It's
not just to talk about what the disease is and
what it does, but to also share personal experiences
because yes, Everybody is different, but we share
a lot of the same issues, challenges and also
victories as colitis patients. So thank you so
much again for taking the time and sharing your
story. And I wish you nothing but the best with
your continuing remission. Thank you so much.
I appreciate being here and best of luck to you.
Thank you. That's it for today's episode of Talking
S*** presented by Colitis Unfiltered. I'm Franck
Tabouring and if this hit home, or hit your gut.
Do us a favor, subscribe to the show and follow
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the bathroom floor.