1:00pm
Just got home. Had a doctor's appointment
this morning for my Crohn's.
They took some more of my blood
to do more blood work and test my
bloods cells and potassium along
with a bunch of other stuff I don't remember.
The Lialda I am taking is not strong enough
or helping enough to put my symptoms into remission
so the doctor is giving me one of three
other options to chose on top of the Lialda.
I have a month before my next appointment
to chose one. Boy doesn't this sound like fun?!
The options can come with some severe side affects
the doctor said but if I just stay on Lialda
I could end up with too much damage to
my colon without this other medicine to the point that I would need an operation to remove some or all of the colon.
The operation does not cure Crohn's as there
is nothing to cure Crohn's. It only removes
the damage that the Crohn's has caused.
This is not an easy decision considering
that the doctor stressed their can be some
serious side affects with these medicines!
Here are my options-
Given by injection by doctor.
Is used to lessen signs and symptoms of moderate to severe Crohn's disease
in adults not helped enough by usual treatments.
Side affects:
-Tuberculosis,
-Infections caused viruses, fungi or
bacteria that has spread throughout the body,
Some patients have died from these infections.
-Upper respiratory infections like colds and flu.
-Unrinary tract infections.
-Rash.
-Heart failure.
-Nervous system problems.
-Allergic reaction.
-Hepatitis B virus reactivation for those
who carry the virus in their blood.
Some patients have died as a result of this.
-Blood problems. Your body may not
make enough blood cells to stop any bleeding.
-Immune reaction, Lupus like symptoms.
Shortness of breath, joint pain or a rash
on the cheeks or arms that worsens with sun exposure.
-Some cancers.
I'm sure you all have seen this
advertised on TV. I know I have.
(this is the one I was thinking
about going with because I can sign up with
a program that will make my copay for this medicine
possibly $5 or less.)
HUMIRA is a prescription medicine used to reduce signs and symptoms, and to achieve and
maintain clinical remission in adults with moderate to severe Crohn's disease who have not
responded well to conventional treatments, and in these adults who have also lost response
to or are unable to tolerate infliximab.
Humira is taken by giving yourself shots.
Symptoms-
All symptoms that Cimzia has
but also including-
-Liver problems
-Psoriasis
You have to go to the hospital to get this
medicine by way of an IV which can take
up to 3 hours. The doctor determines
how often this should be done.
-Can lower your body's ability to fight infections.
-Plus all the other symptoms listed
above for the other medications.
1:55pm
I might go lay down and try to take my mind
off all this at the moment because it's confusing
and scary and I'm having a hard time coping
with the fact that one day I am fine
and the next I have this disease out of nowhere
with all these complications and impacts
on my life. It's not easy dealing with it.
Some days I just want to pretend I am fine,
not take any medicines
and go about living the way I used to
and whatever happens to me happens
the way nature wants it to be.
I could probably apply for disability
with this condition along with the
having panic attacks.
But by doing that it would finalize to me
that I really have a serious medical condition
and I'm just not reading to take it that far yet.
Right now I don't want to believe
I have something this serious just yet.
I need to let reality set in first.
Does that make any sense?
I need to take baby steps.
5:05pm
Tony has to work over tonight. Then after work
he is putting brakes on a coworker's car as another
side job.
For supper I wanted to make Nachos.
I've been craving them for some reason.
I got to thinking about how to make the
cheese sauce. I have a block of kroger
style velveeta cheese but don't want to
use the entire block for the sauce.
I was thinking about using about 1/3rd
of the block of cheese then stirring in
a package of Pioneer sausage flavored gravy
and 2 cups of water along with about
1/3 cup sour cream that I had leftover.
Then fry up a pound of deer burger
with a can of Italian stewed tomatoes
and stir it into the cheesy gravy mix.
Serve with tortilla or Dorito chips.
Still looking over the different types of
injection medicines for Crohn's to learn more about
each one. I searched online to get an
idea of how often people had to
get these shots.
It seem that if you take Humira or Cimzia
injections you get them
every week or every other week depending upon
how severe your situation is.
Now to do the Remicade by way of IV
in the hospital it looks like you do that
starting now, 2 weeks, 4 weeks, 6 weeks
then maybe every 6 to 8 weeks after that.
And that can take 2-3 hours in the hospital to do each time.
The hospital IV route seems like it would
be the most expensive.
If I chose the Cimzia route then I have
to make doctor's appointments to have
the injections which sounds like it would
cost more to see the doctor on top of the
cost of the medicine.
And then there's Humira which you inject yourself.
This to me sounds like the cheapest option
but the thought of having to stab myself
with a needle 2-4 times a month makes me cringe.
7:50pm
Tony should be home in the near future.
I took a nap earlier and are still feeling tired.
After feeling really good for the
past week I fear that another flare up could
be just around the corner.
It sucks because they usually occur
every other week to every two weeks for me.
That's the reason the doctor wants
to put me on these shots or infusions.
I have been trying so hard to work on getting my
house cleaned up
(I call it my Fall or Back To School cleaning)
from the last bad flare up
and getting things done that have been put
on the back burner.
When I feel good it feels like a race
to get things done around here
because I know what is lurking.
5:05pm
Tony has to work over tonight. Then after work
he is putting brakes on a coworker's car as another
side job.
For supper I wanted to make Nachos.
I've been craving them for some reason.
I got to thinking about how to make the
cheese sauce. I have a block of kroger
style velveeta cheese but don't want to
use the entire block for the sauce.
I was thinking about using about 1/3rd
of the block of cheese then stirring in
a package of Pioneer sausage flavored gravy
and 2 cups of water along with about
1/3 cup sour cream that I had leftover.
Then fry up a pound of deer burger
with a can of Italian stewed tomatoes
and stir it into the cheesy gravy mix.
Serve with tortilla or Dorito chips.
Still looking over the different types of
injection medicines for Crohn's to learn more about
each one. I searched online to get an
idea of how often people had to
get these shots.
It seem that if you take Humira or Cimzia
injections you get them
every week or every other week depending upon
how severe your situation is.
Now to do the Remicade by way of IV
in the hospital it looks like you do that
starting now, 2 weeks, 4 weeks, 6 weeks
then maybe every 6 to 8 weeks after that.
And that can take 2-3 hours in the hospital to do each time.
The hospital IV route seems like it would
be the most expensive.
If I chose the Cimzia route then I have
to make doctor's appointments to have
the injections which sounds like it would
cost more to see the doctor on top of the
cost of the medicine.
And then there's Humira which you inject yourself.
This to me sounds like the cheapest option
but the thought of having to stab myself
with a needle 2-4 times a month makes me cringe.
7:50pm
Tony should be home in the near future.
I took a nap earlier and are still feeling tired.
After feeling really good for the
past week I fear that another flare up could
be just around the corner.
It sucks because they usually occur
every other week to every two weeks for me.
That's the reason the doctor wants
to put me on these shots or infusions.
I have been trying so hard to work on getting my
house cleaned up
(I call it my Fall or Back To School cleaning)
from the last bad flare up
and getting things done that have been put
on the back burner.
When I feel good it feels like a race
to get things done around here
because I know what is lurking.
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