Dealing with Crohn's

Any day I have to go to the VA Hospital fasting, always sucks. This time it was for an ultrasound of my abdomen. I've been having a sharp pain in my left kidney that reminds me of the horror of passing a kidney stone several years ago. Another of the long term "benefits" of Crohn's is kidney stones. Since my digestive system is already compromised, it is prone to pass too much fatty ingredients into my kidneys, which eventually turn into stones. Now I've been through a lot of pain in my life, but nothing, except maybe for surgery, compares to passing a
kidney stone. Now, I wait for the results to see if any thing was detected.

It was so beautiful
Mountains on one side
A lazy river on the other
Clear blue skies and sunny
Warm but, since it's winter, not too hot

And I tried, I really tried
I took some extra meds
To help me control my bowels
However, by the time we got to the park
I was already feeling the unwanted urge
While the park is pretty new
It doesn't have any bathrooms

The plan was while I played in the park
With my 5 year old daughter
My two oldest daughters
Would stay at home
And help Santa
By wrapping everyone's Christmas presents

So after just a short time,
I knew that I was going to need
To go to the bathroom
Since the park is outside of the city
It is somewhat secluded
So I told my daughter to keep playing
While I headed to a distant corner
To relieve myself

Now this is not the first time
I've been caught someplace
Without a bathroom
So I don't have any problems
Doing what I have to do
To avoid an accident

Well everything worked out
I was able to take care of my urge
And I felt relieved
To have gone un-noticed
Without making a mess
Or a spectacle of myself
I felt better
So we were able keep playing
With me thinking I had lucked out
Or so I thought

We kept playing and everything
Was going as planned
But then I had a strong urge
I thought that if I only sat down
That maybe it would pass
Sometimes it is just so hard to know
Whether it is just a little gas
Or something far more serious

When I told my daughter
I had to go again
All she could say was "Again!"
I knew, however, when I stood up
That I wasn't going to be
As lucky as before
I tried make it
I made a run for the corner
But you wouldn't believe
How difficult it is to run
While squeezing your
Ass checks together

Well, when I was about half way there
I lost my battle
And by the time
I had my pants down
I had a pretty big mess on my hands
And in my underwear as well
I finished what I had to do
But there was really
Only one thing to do
I stepped out of my shorts
And my underwear
I pulled on my shorts
Balled up my underwear
And headed for a trash can
I threw away my dirty drawers
Then I headed back
To the playground
To collect my things and
Give the bad news to my daughter
We had to go!

She understood
We headed for the car
With my shorts stuck to my ass
Luckily we had a blanket
For me to sit on
A quick warning call
To my little elves
Then we were headed home

Once home
I went straight to the shower
I kept washing my hands
Hoping that
They no longer smelled
Finally
After washing three or four times
I finished
Once dressed
I threw my dirty clothes in the wash

While driving home
With the air conditioning on high
To cover the smell
I couldn't shake the sense
Of having my my dignity
Stripped .away from me
As I stooped naked
In a ditch

I was reading some stories about other Crohn's patients over at the Crohn's and Colitis Foundation site.  Now here's what is so frustrating about Crohn's. I like many of the stories on the site have been through almost all of the treatments available under the category called maintenance therapy. If you're new to Crohn's then you should know that, so far, Crohn's is not curable. So maintenance therapy's target is to enable patients to maintain their health in a disease-free, or limited-disease, state. Pretty cool huh? I'm in a limited disease state.

So I read these stories and I am reminded that there are many people you have suffered more than me. Right now I'm on a classic cocktail of maintenance drugs while receiving Infliximab (Remicade®) infusions every 8 weeks. Now as with any treatment results vary from patient to patient due to our unique chemical composition. One treatment I haven't tried is Adalimumab (Humira®), but it sounds like all of the other options. It comes with a long nightmare list of possible side effects.

This morning I went to bathroom 4 times, each with a urgency of what I would call immediate. Over the past month and a half I've been suffering more than usual, with an occasional bloody stool. With factors including diet, mental health, and regular drug dosage, it's hard to know how well I am. As one of my doctors explained to me,  Crohn's is very tricky. A patient can feel very good, but clinically have very active disease, as well as feeling like shit (pun intended), with no clinical indications of active disease.

At the end of the day, I wonder. Am I better off taking all the drugs that I am prescribed? I mean would my symptoms be worse without the drugs? When my wife sees me suffering she really tries to understand, but it's certainly one of those things, you really wouldn't understand unless you had Crohn's. I just keep going, making the best of my life, suffering through my symptoms. This is how I try to explain it, what other choice do I have?

As my alarm clock went off this morning, I reached over to hit the snooze button when a gut wrenching pain seized me. It felt like I had woken up after doing like a thousand crunches the day before. Merely moving caused the pain to shoot outwards from my stomach.

So I laid back down, now fully awake and tried to rest. Eventually I felt the urge to go to the bathroom and shuffled into the toilet. I didn't know if this was the beginning of a purge or just a simple cramp. Thankfully after just the one bowel movement, the pain eased and I was able to rest comfortably and fall back asleep. Thanks to my understanding wife, she told me to stay in bed and she would get everyone up and out the door.

After about 3 hours of rest I awoke feeling, nearly human, but with a lingering echo of pain in my stomach.  I had to go to the bathroom a couple of times, and then I was able to sit down and have my morning 's cup of coffee. However, after three more trips to the bathroom, it seems like it's not going to be a good morning.

When I have a morning like this it's like moving through the rest of the day dragging an anchor. After clinching my way through each cramp and rushing to the bathroom 5 or 6 times, it's like draining your batteries before even starting the day's first task or walking out of the door.

Then again, I often have bad afternoons, and even bad nights, but I think the morning trials are the most frequent. After a bad morning, it is just so difficult to get moving. With every movement, I get a twinge in my gut, a small reminder of what I've been through. Tough mornings lead to fatigue, low levels of energy, a predisposition to depression, and a day where I just feel like doing nothing.  Although, in the end, I eventually just pull together all of my reserve energy and get moving. Then after I've started moving around, it becomes easier to just keep moving. That will usually get me through the day, or at least until I slow down, then my energy reserves fail and it once again becomes difficult to get moving again.

When my wife got home she asked how I was feeling, and I said that it was a relatively normal day, for me. Let's see I went to the bathroom in Walmart, Kmart, the gym where my daughter's dance was, and about 5 other times at home. My hemorrhoids are burning so I had to dab on a little Preparation H. Oh yeah and I've doubled over in pain about 10 times from the stones I think I have in my left kidney. You know, normal. Believe it or not, it could have been worse.

For those of us with Crohns, we become overly sensitive to any feelings that might indicate a forthcoming bowel movement. At the first tinge of pressure, we need to instantly determine if we have to run for the bathroom, or whether we can wait for the urge to pass. And what may be nearly unnoticeable to a normal person, becomes an early warning system for us.

Sometimes we're not really sure what to expect when we feel a twinge in our bowels, and while, over time, you begin to learn the telltale differences, we can often be fooled. Furthermore, since we can't risk trying to discretely squeeze out a little gas because it could become a lot more messy than we bargained for, sometimes we head for the bathroom to finally end up passing some innocent gas. However, unlike that infamous bathroom graffiti:

Here I sit broken hearted
Thought I had to shit
but only farted

we are happy to be disappointed with some harmless gas. Although our hemorrhoids still take a beating from the constant wiping, it is a relief when we don't suffer through another intense bowel movement.

When we are with someone and we are feeling gassy and feel a sudden pressure, we immediately focus all our of our senses inward to tighten up our sphincter (LOL. I never thought I'd actually use that word in a sentence in a non-comical way). You probably wouldn't even be able to tell anything unusual was happening, unless you looked real close. We may grit our teeth, and maybe bite our lip until the pressure subsides. If the pressure becomes too much, we'll politely excuse ourself and head for the bathroom. And so it goes, sometimes a few times a day or maybe 10 or even twenty times in one day. Day after day; week after week.

After the fourth time
I am the living dead
shuffling between
the bathroom
and my bed

With each trip
I get a little slower
With each trip
My ass gets
a little sorer

Now if I'm lucky
and I can feel
one of my turns
coming on
then I can load up
on enough pills
to dull away
a bit of the edge

But if I'm not
and I get lost
within a purge
then it's off to
terrorville
where my guts will
attempt to blow up
while still inside of me

Then it takes
everything I am
to drag myself
out of my bed
and spill my guts
only to shuffle
back into bed
carefully collapsing
without sending
ripples of pain
through my body

When it gets past ten
I've reached my breaking point
I begin to beg and plead
for any relief possible
sometimes my tears are
answered by the
blessed arrival of
full blown diarrhea
which hints to me
that the cramps have
almost run their course

If the diarrhea doesn't come
then the only thing
that can save me
is when the pain and exertion
leave me too weak to
remain conscious