Dealing with Crohn's

by Tommaso Meli

Introduction

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk.

Adalimubub

Redness, itching, or swelling
 at the injection site
Easy bruising or bleeding

Stomach pain
Blood in the stools
Dark urine
Severe headache

Difficulty with speaking/chewing/swallowing/facial movements
Butterfly-shaped rash
 on the nose and cheeks
Numbness or tingling of the arms/hands/legs/feet

Night sweats
Persistent sore throat
Extreme fatigue
Muscle weakness


Vision changes
Itching
Joint pain
Swelling

Fever
Skin cancer
Rash
Lymphoma


Chills, Oral thrush

Persistent cough
Trouble breathing

Painful or frequent urination

Severe dizziness

Unusual vaginal discharge
Mental/mood changes
White patches in the mouth

Unsteadiness

Fast /irregular/pounding heartbeat
Leg pain or swelling

Yellowing eyes and skin

Disclaimer: Many people use this medication do not have serious side effects.

Subcutaneous Humira Injection

[Scene One - Flashback]

Last night I had to take my daily and weekly medications. It started with a small handful of pills. Then I had to self-inject Humira followed by self-administered Mesalamine enema.  I'll be switching back to the Mesalamine pills soon; after I have finished a 28 day regiment of enemas.  Yeah me!

I tried to back off of my weekly dosage of Humira and it nearly brought me to me knees.  After about a month, I noticed a distinct chance in my health.  I started to get stomach cramps, which were followed by heavy days of diarhea and bleeding. Something was definitely not right.  I remembered that I had a stockpile of Mesalamine enemas, and and promptly switched to nightly enemas. I also switched back to weekly Humira shots.  That seems to have done the trick, cause I'm feeling much better now. :-D

You don't look sick

[Scene Two - Recurring]

Being medically retired by Chron's disease has it's ups and downs.  When I'm feeling well, I make a point of participating in community activities.  Invariably, when I'm networking at an event, I'll met an old friend or someone asks me what I do.   My answer varies, but if I tell them that medically retired, a common response is "You don't look sick!"   Which probably seems true, but it is still far from accurate.

These are many situations (like a night of self-administered medications) that pass by in private. If they are effective, then no one knows about the sacrifices an IBD patient makes to sustain his energy, strength, and motivation.  Because my handicap is systemic, and not overly visible, like a missing limb, I can understand why people can conclude that I'm physically fit.  Of course, they don't see me when my hemorrhoids are throbbing with pain after 10 evacuations during a single day.  On those days, I usually don't stray far from my bed and a toilet.

It's a ironic twist of fate.  If I'm managing my medications and diet then I seem fine, if I'm not or if I'm having a flair-up, then I'm simply absent.  If I do happen to venture out when I'm experiencing a flair-up, then everyone is visibly unsettled by my contorted faces and lack of energy.  Unfortunately, it comes down to one of two situations.  When I feel bad, I usually suffer in silence.  When I feel better, than no one even knows I'm sick unless I bring it up.  More and more, I just avoid the subject.  Either way, IBD is an ailment that forces its' victims to suffer in silence.

Another Remicade treatment this morning. What most people don't get about IBD: Every 6 weeks I get a treatment to LOWER my immunity; that means I have constant skin infections; I STILL have diarrhea most every day; and I almost always feel like I have to go to the bathroom.

As part of my ongoing project to document my life dealing with Crohn's Disease, I'd like to make it clear, that this blog, "Dealing with Crohn's" (project) is for enhancing and improving the community of people impacted directly and indirectly by Inflammatory Bowel Disease (IBD).

In line with that commitment, I want to help amplify the work of the Crohn's and Colitis Foundation of America. Founded in 1967, the CCFA is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. Bottom line, anyone who unfortunately joins into our community (the community of IBD patients and their families), the CCFA is really the first place to start. They have such a valuable collection of materials and resources; I can't stress enough the importance of completely consuming everything available from the site.

One word of caution however, as most non-profits, their livelihood depends upon donations from the community, so be forewarned, if you become involved, please don't be surprised by their never ceasing attempts to raise money. Anyway, don't say I didn't warn you...

For myself, as I'm trying to live up to my commitment to document my own personal struggle,  I've also realized that there is more that I can do to help our community. The first is by recognizing that I have unique talents that can help spread the message of hope that is represented by the CCFA organization. So from now on, I'll be taking valuable messages sent by the CCFA and repeating them here for your convenience, as well as the convenience of the search engines.

The second way that I've decided to help the CCFA is to start raising money for them. I was inspired by the "Bros for Crohn's- Puerto Rico por una cura al Crohn's" effort. I came across them in Facebook and followed their efforts to raise money for the CCFA. One of the ideas I had was to help organize a "Walk for a Cure" event in Puerto Rico. I've been in contact with the CCFA, but haven't been able to make much progress. Some other ideas have crossed my mind, but I'll get back to those after some more cogitation.

Finally, I guess it wouldn't be right to end this post with a small mention, that anyone can make a donation to the CCFA, right through their website. So, if you haven't ever made a CCFA donation to help find a cure, why not start today? You see, I warned you....

Ahh... to be normal again
Never to have been diagnosed
Never to have suffered.
The surgeries, the pills
the treatments, the pain

There are some days
when I forget
And everything is
as normal to me
as it is
to everyone else
When I through up
my facade
and only appear
to be normal

Most of the time
I live in a dream
I construct
to hide
my abnormality
And while
you might think
I'm intentionally
deceiving
my friends and family
It's because
that's the reality
they want to see

They want me
to be normal too
They don't want
to be reminded
of the burden
I carry
nor face
the limitations
I confront
So we're both
complicit
in the lie
that I'm normal

Most days
I'm successful
in keeping up
my part of
the deception
For if they
really knew
how much
I suffered
then the pity
and doubt
would appear
quietly replacing
their image
of who I am

No
then we'd both
have to face
the truth
That I'm not normal
No,
I'm not normal
I haven't been
since I nearly died
in the hospital
more than
twenty years ago

In the beginning
it was so much easier
to pretend
but, for what seems
like an eternity
my struggle to keep
up appearances
has grown
more difficult

Today I let
my real persona
pierce through
the curtain
of our
shared theater
For their was
no denying
by ether of us
that I'm disabled
handicapped
But tomorrow
who knows
For both
of our sakes
my symptoms
will diminish
and we'll
both back
to believing
that I am whole
At least until
I break
character again.

Another day in paradise
If it isn't crippling pain
that makes me groan
and curl up into a ball
Then it's a long slow
string of unending trips
to the bathroom.
Tenusmus that's it's
clinical name
but I call it
life as I know it.
A feeling of
incomplete defecation.
Aren't doctors the
real poets of our age?
Then of course
if I'm truly cursed
then I'll get
both together
which I lovingly
call "The Purge"

Unless my laboratories worsen or a study turns up something more malignant, I'll keep getting Remicade infusions every weeks. I guess that's the pessimistic perspective, maybe the labs will improve, my symptoms better, and we'll be able to move to less powerful drugs to treat my Crohn's.

To set this stage, as I receive the infusion, I tweeted from my cell phone the experience.  This post recollects the posts in chronological order. Remember that each post has to be less than 140 characters, actually even less so now, because I try to include the #tweement hashtag.

Here we go again. Back again in the clinic for a Remicade treatment. I know it's helping, but I have to admit it's getting old.

All wired and tubed up. Pre-meds are on the way, soon to be followed by the real deal, Remicade.

Listening o Dr. Denis Leary "Why we suck" - Totally guaranteed to heal you of anything that ails you.

Second batch pf premeds on tap, getting a little buzz, but it also could be trying to fight off roaring out loud at Dr. Leary.

And so it goes, drip, drip. drip. Beep, beep, beep. As I lay here, as close to being in chemo-therapy as I ever hope to be.

Must be drawing some strange looks as I laugh out loud to Dr. Leary's description of what guys think about.

And blah, blah, blah. More dripping, waiting for them to start the Remicade, they haven't brought over the IV pump.

The nurses are running slow, the dripping has stopped. They should be hanging the next bag of whatever.

Well the nurse brought the pump, "low battery," fail. Still stuck, oh great. I'm so glad this is taking longer. Just great.

Finally, they found a working pump and the Remicade has started. Now two hours of dripping. Getting that funny taste in my mouth.

As the Remicade pumps into my arm, it's cold. It chills my soul, I usually get drowsy at some point in this process, but no luck.

Feeling a bit sleepy. Am I being affected by the drugs or am I just getting bored.

Either I'm becoming more tolerant to Remicade, the nurses forgot something, or the pharmacy got the meds wrong, because I'm still awake.

As usually happens with the introduction of so much extra liquid into my blood, my bladder is filling.

Still got that funny taste in my mouth, but I've only gotten a little drowsy. I wonder if this is the way it's going to be now?

Nurse just stopped by to check the pump, he tells me that I've still got another hour. So I adjusted my bed to sit up.

Finally finished "Why we suck." Totally hilarious! Started something more heady, Joseph Campbell's "The hero with a 1,000 faces"

I used to awake with a full bladder, however now I notice it slowly filling.

Looking up at the bag of magic elixir, I notice that it's just about finished. The pump should start beeping at any moment.

Here it comes....BEEP, BEEP, BEEP. The IV pump sounds it's alarm.

Just need to disconnect the vital monitoring, did it myself. Then I head straight to the bathroom to relieve my bladder.

Now I have to eat the obligatory, driest sandwiches in the world.

I choke down the sandwich by dipping it into the juice they give you with the snack.

Well, good to go for eight more weeks. I hope this makes me feel as good as I did at the beginning of the year. That leaves me with four more treatments. I intend on eventually illustrated one of these treatments. I've captured some images, and if as I eluded, if I'm not going to crash out during the process, then I think I'd like to do a like illustrated tweetment using 1 minute sketches.