Dealing with Crohn's

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.

I sit here in a dark hospital room, watching over my brother as he sleeps. He's just underwent his second major abdominal surgery in a year. It started a year after his heart attack, when at the age of 53 the doctors said that they had discovered a mass in his colon. After a failed laparoscopy resection of his colon, they had to give him an emergency colostomy.

During a pre-surgery colonscopy to check the state of his colon, they found chronic uclerative colitis.I'm here with him now, because they went ahead with the planned surgery to remove the colostomy, however, from the beginning the surgeon was already acknowledging that there might be complications. Well the surgery did have complications, there were adhesions that have developed on his colon, and he had several ulcers in his small colon. For me, it was conclusive. He had Inflammatory Bowel Disease.

In the end of the surgery, they had to give him an ileostomy. There was just no risking connecting his large bowel, it had to heal first. Now they've said that since he's healthy, he can expect another surgery in 6 to 8 weeks to get the ileostomy removed.

It's odd to see my brother enter my world at such a late age. I guess it just goes to show that age isn't as limitation, it can manifest at any time. My heart goes out to him, really, After the heart attach, the heart surgeries, the colon surgeries, the failed resection, and now an ileostomy, he's had a tough last few years. Add to that, he must now begin treatment for IBD, So far, his will to live has been strong, but everyone has their breaking point, when enough is enough. Hopefully he'll still admire the daily miracles that happen all around us, and thus keep up the good fight...

Since I've been feeling so good this year, I learned unequivocally the direct correlation between the management (of the lack there) of my stress and emotions. This morning was a perfect example. After receiving some distressing news and requests, I let my imagination get the best of me and let my emotions spin out of control.

It culminated in a major discussion with my wife where she ripped open old scars, forcing me to shut down the conversation before it escalated any further, but the damage was done. I could feel the adrenaline pumping through my system and my entire abdomen tightening up.

So this morning I work up with stomach cramps and gas, but before I even had the chance to drink my morning coffee, I started a purge. As expected, it required 8 or 10 trips to the bathroom; each becoming more difficult than the last.

By early afternoon I was regaining a little but of my humanity. It's weired, but once the purge begins, it's a small comfort to know that it's "only" temporary. In some ways, it;'s very Zen; without having to go through what I do, exploring the depths of my humanity, that I can truly claim that I'm reminded of the blessing each day is, and  that eventually peach, comfort, and tranquility await. Which is not to sat, that I wouldn't easily give away my "enlightenment" for a chance to by anything lik "notmal"/any if I didn't have to suffer any more.

So, since I decided to give the two shoots in my thighs, I gathered everything together and took a seat beside the vials, the syringes, and the alcohol wipes. I figured it would be easier to grab a chunk of my thigh muscle so I could stick the needle in to it.

The first step was preparing the syringes. As you've seen in the movies or on television, I soon discovered that there's a good reason why they always show people filling a syringe with the vial of medicine upside down. First, one of the vials was too tall for the needle to reach the liquid, so the only way to get it to the top effectively was to turn it upside down. Plus I soon realized that is was also important in getting the syringe full of liquid instead of air. So with both syringes full and all of the excess air squirted out of them, it was the moment of truth.

Without thinking about this too much, I proceeded to sit down and rip open one of the alcohol swabs. I chose a location on my right thigh and pinched it between my thumb and forefinger with my left hand. I put the needle to my skin and begin to push. As you might realize, this was the "wrong way" to do this. Thinking back, I should have stabbed it into my leg, but, like I said, I wasn't thinking too much about what I was doing in hopes I wouldn't recognize what was going on and begin to freak out. It was weird, as I pushed, my skin dimpled in refusing to let the syringe pierce it, at least until the force was too much and it slid into my thigh. You know that part didn't even really register, it was only as I begin to push the plunger on the syringe down and begin the injection process did it hurt. Then it hurt a lot. I immediately thought to my self, "Oh my-freaking-god, this totally sucks." The pain was pretty intense.

I was instantly swept back to when I was 9 or 10 and the summer that I contracted  the "kissing disease," mononucleosis. At the time we were still using the Tricare facility near home for all of our health care. When I got sick, my Mom took me there, where a blood test confirmed the diagnosis. The first step in treatment involved an injection of penicillin. I remember the doctor pulling out this huge stainless steel syringe and filling it upside down with the penicillin. He had me drop my pants and, you guessed it, proceeded to give me the shot in my right thigh. At first he jabbed the needle in, and that was okay, but when he shoved it in down to the hilt of the syringe, I recall my Mother saying, "He's going Doctor!" Everything got fuzzy and I turned pale white. When I regained consciousness I was leaning against a wall on the examining room bed I was sitting on and I was covered in a cold sweat.

So I finished the injection, and with my thigh throbbing I stood up. I had already broken out into a cold sweat and I was already feeling a little dizzy. So I made my way over to the living room couch and laid down, and while I didn't blackout I was woozy for a moment.

After a few minutes, with my head a little clearer, I  went back to my chair and repeated the process with the other syringe and the other leg. After the second injection, I was a little better prepared and the needle went in quicker and the injection didn't strike my system so violently. However, after both of the injections I was still feeling a bit woozy, so I retired to the bedroom to close my eyes for a while.

While I'm sure that anywhere I would have given myself the injections would have hurt like hell afterwards, I realized that having both thighs throbbing with pain, sort of made walking a bit of a challenge. As you can imagine, it's kind of hard to limp with both legs.

Looking back, I probably shouldn't have been so gung-ho  on shooting myself up with these drugs. Again, my thinking was they arrived from my Gastro after the treatment, so she must have meant for me to use them. It turns out though, that it was all a mistake. The medicine that I received was, in fact, the pre-medication that I'm given prior to my Remicade treatment. Some how an extra order was made to the VA pharmacy and they were dispatched as ordered.

In the end, I guess it's true "what doesn't kill you, makes you stronger." I now know how to give myself an injection, so I can start giving myself my B-12 shoots as prescribed. Before I was always dependent on a nurse at the VA to help me out. Although, when I do try the first one, I think I'll try for my upper left arm instead of my thigh. While it was nostalgic to revisit my penicillin  injection of long ago, I'd rather not return there anytime soon.