Hey it's Marvolo and welcome back to my channel.
Last year around the two year anniversary
of my Crohn's diagnosis, I decided to share
my Crohn's story.
We just passed up my 3 year anniversary.
It was at the end of March.
Or as I like to think of it, my Crohns-i-versary.
Being that time of year, I thought it'd be
a good time to continue my Crohn's story where
we left off.
Being newly diagnosed wasn't an easy time.
It was really great to have a name for what
was going on, and to know what was in my body
and everything.
But just having a diagnosis doesn't do a whole
lot for your health physically right off the
bat.
Thing don't just magically get better once
you know what's wrong, especially with Crohn's
disease.
Crohn's disease can be very different in how
it affects different people, and there's no
one size fits all type treatment.
Immediately I was put on three different medications
after my colonoscopy, and after my diagnosis.
First I was put on Flagyl, which is an antibiotic.
They thought I C-diff.
Clostridium Dificile.
Which is a bacterial infection that occurs
generally in the large intestine.
It turned out I didn't have that, so I didn't
have to do a full course of Flagyl, but I
did take it for a while.
And I also took Balsalazide Disodium, which
is a 5 ASA drug.
That's just the class of drug.
I don't really know a whole lot about it.
I know it is used to treat Crohn's.
It's one of the more mild medications.
I don't remember any particular side effects
from it.
It's easier on the body, but it's hard to
say what side effects come from what when
you're taking various medications.
In addition to those two medications, I was
put on Prednisone.
I had heard about Prednisone during my time
browsing on the various Crohn's forums, because
before diagnosis idea that it might be Crohn's.
I thought I was prepared for it, but I really
don't think anyone can be prepared for the
toll that steroids can take on the body.
And on the mind.
I was looking back from my blog from around
this time, and I found a blog post about steroids
that I wanted to share with you all.
Dear Steroids,
I am so over you.
You cause me pain and make me over-emotional.
I've spent so many nights sleepless because
of the things you do to my head.
My body aches when I'm with you, but it aches
after you're gone too.
You've left me with permanent damage.
Things that can never be replaced
A lasting pain from the damage you've done.
All you seem to do is take, and I never get
anything in return.
You're supposed to make me feel good, but
you just make more problems.
I'd be better off without you, if I could
live without you at all.
Fuck you steroids.
Yeah.
Heheh
I think that pretty well sums up my feelings
on Prednisone.
Satan's Tic Tacs, that's what a lot of Spoonies,
or people with Chronic Illness, call them.
Within a week of starting Prednisone, I had
started to experience a lot of swelling.
The swelling that comes from these sorts of
steroids, it goes to a lot of unwanted places.
Generally, one of the first places to swell
is the face.
We like to call it moon face, because, you
know, no matter the shape of your face naturally,
it becomes round and moon like.
Yeah I'll make sure to include some pictures
so you can see what my moon face looked like.
I tried to work with it as best I could, but
at the very worst of it, my cheeks were so
swollen that any time I spoke or ate, my teeth
would cut into my cheeks.
I experienced swelling in other parts of my
body too.
The swelling can be in different places for
everyone, but they are usually in really inconvenient
places.
You'll put on weight with steroids, but in
the weirdest places.
The worst place that I had swelling was my
feet.
And it wasn't normal foot swelling.
After losing so much weight with my Crohn's,
and then the added weirdness of being on steroids,
my curves disappeared.
It was like a reverse puberty almost.
No boobs, no butt.
But I kind of thought of it in a different
way.
Instead of my boobs disappearing, it seemed
like they migrated to the tops of my feet.
I want you to try to imagine that.
This jiggling fat sack on the top of each
foot.
And not just like small, I mean, it was pretty
large.
My feet got huge, or at least the tops of
the feet, with the jiggliness did.
I went from wearing a size 6 1/2 shoe to a
size 9 1/2 shoe, and even at that, I was wearing
slippers.
Whether I was in the house, outside of the
house.
Any time I had to wear shoes, it was slippers.
It was okay, because I really didn't leave
the house much.
And if I did, it was just to go to the doctor
usually, at that point in time.
But yeah, that was really weird.
My feet jiggled whenever I walked, and I nearly
tripped over them several times.
Foot boobs.
I wish I had pictures to show you, but I never
did.
I never thought I'd want to see that again,
so I didn't bother.
Prednisone some other changes too.
I was hungry all the time, and when I ate,
I ate a lot.
I was like a teenage boy in the depths of
puberty.
That's the kind of appetite I had developed.
I remember getting this like massive five
pound log of provolone and finishing it like
in a couple of weeks, just to myself, just
eating slices of cheese.
I didn't use it on anything.
I just was eating the cheese.
My doctor saw me after I had been on steroids
for two weeks, and he immediately knew that
things weren't going well.
Just seeing my face, seeing all the swelling,
he knew I was reacting poorly.
It's normal to have swelling, but the amount
I had in comparison to what I looked like
before...Yeah he said that wasn't normal.
I guess I'm highly sensitive to prednisione.
Or there's also the chance that maybe my low
weight made it more potent.
I was malnourished.
I had a low blood count.
Low hemoglobin.
So that could factor in too, but he told me
that, see I was on 30 milligrams of Prednisone
at the time, but he said that it was affecting
me more like 60 milligrams would affect someone.
Despite all the side effects, it really wasn't
doing anything for my Crohn's, so he decided
that it would be best for me to get onto a
different medication, and slowly taper off
of the steroids.
The new type of medication my doctor put me
on were biologics.
I'll get into a biologics in a video, but
for know, I want to tell you about steroid
tapers.
They fucking suck.
I was moody as hell.
I was cranky.
I would go between wanting to sleep forever
and not wanting to sleep at all.
Steroids themselves can make it hard to sleep,
so when you're coming off of them, it makes
you have a really, really sporadic sleep pattern,
and its really hard to get things done when
your sleep pattern is just so random.
The smallest things would bother me back then.
I'd get irritable really easily, and I'd cry
with almost no reason.
It was hard.
Coming off of steroids is taxing both physically
and mentally.
On top of all of that, any sort of body confidence
that I had was thrown way out the window.
My curves were in all the wrong places.
Unless you like back humps and foot boobs.
Then I would've been your dream come true.
I know it's silly but uh, superficially things
like that can be really important.
And it can be really hard to see into the
future and see past what's right in front
of you.
I remember being on a photoshoot when I was
still tapering off of steroids.
I thought maybe the moon face had reduced.
And it had reduced some, but really I should
have waited a couple more months before getting
back into modeling.
Anyway, on the photoshoot, the photographer
showed me some of the images while we were
working, and I just burst into tears.
It didn't look like my face.
I was disgusted by what I saw.
And now that I think about it, you know, it's
probably not the best way to respond to a
photographer, but at the same time, I couldn't
really control myself.
My emotions back then when I was coming off
of steroids, I was just a wreck.
But he said something along the lines of "you
better get used to it, because you know, that's
your face, you're kind of stuck with it."
Yeah that didn't help me to feel any better
at all.
Also it's just not true.
Moon face doesn't stay around.
He didn't know the situation, but you know,
he didn't know what to say.
But really, he made the whole situation worse.
Moon face goes away though, and that's important
to remember.
It can be really hard to see past it, but
the side effects, for the most part, will
go away.
Most side effects from medications will go
away when use is discontinued.
Although not all of them.
Some medications have a side effect of death.
Or cancer.
Those don't go away, but we'll get to that
another time.
Oh something else that happened while I was
on Prednisone.
So it can cause bone density loss, and a lot
of people develop arthritis, which I did.
And just joint issues in general.
My joints are much more cracky and pained,
especially when it's cold out.
I don't have Rheumatoid Arthritis, just Osteoarthritis.
And it's not that bad really.
But I didn't have that before I was on steroids.
And also, between the vomiting and the steroid
use, the enamel of my teeth really broke down,
and I ended up cracking one of my teeth just
eating cereal.
So it's really important if you're on steroids,
the longer you're on them really...well I
mean no matter what you should have good oral
hygiene and you should go to the dentist,
but if you're on steroids, you really need
to be checking in and maintaining your oral
hygiene more because bone loss and all that
jazz can damage your teeth.
And it fucking sucks.
Alright, I think that's going to be it for
this video.
If you've ever been on Prednisone, or another
corticosteroid, let me know down in the comments
what your experience was like, so we can you
know, trash Prednisone and other terrible
drugs together.
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I love you guys, and I'll see you again soon.
