Dealing with Crohn's

I'd have to say that this has been a memorable year of dealing with Crohn's. I've sure had my ups and downs, more than my share of suffering, as well as more than usual share of procedures, treatments, and medications.

I've felt pretty good since my last Remicade treatment, and I've been pretty successful taking at least two Sucralfate tablets a day. I've only had a couple of painful bowel movement collections, and my energy level has been good. Of course, it has also been nice to have everyone on vacation, so it's been pretty mellow.

In January I've already got another "fun" procedure schedule. Since Crohn's can affect any part of your digestive tact, yep that's right, from your lips to your anus (hey wait a minute, that didn't sound right...) my doctor at the VA Hospital wants to check out my esophagus and stomach. I've never had an endoscopy before, but it sure doesn't sound like fun.

So I keep going, nothing else I really can do. I'm trying to eat as healthy as possible, and take my medications regularly. Who knows, while it could be a lot worse, maybe this is as good as it gets. I think I can deal with that. I still wonder sometimes though, how much better I might feel if I was more successful in mastering my thoughts.

More than any time before, this year I've been actively trying to train my mind. I've done some Yoga, some breathing exercises, and some meditation, but I wonder if I can't do better next year. Like so many other challenges in life, it all boils down to discipline. Not only do I have to have the discipline to make time for regular Yoga and meditation, discipline is also what I most require within my mind.

Recently I watched an interesting video of David Lynch: Consciousness, Creativity and the Brain. In the video he talks mostly about how Transcendental Meditation. I thought it was curious, because I remember as a senior doing a research paper on TM with one of my best friends in high school. He still is, even though we live far from each other. So I've downloaded some audio programs about TM, but I think that TM is something I need to explore in 2010.

It's my own fault, but there's a long lost streak in me that just loves
to party. It was the traditional Noche Buena celebration, and I had too
many beers (only 5). My doctors always remind me that drinking alcohol
affects me, just like it might for you, if you had a cut and poured
alcohol on it. So for Christmas I got a mini-purge, all wrapped in
cramps and pain, with about 8 trips to the bathroom. I'm starting to
feel a little better now, so hopefully it's run it's course and the rest
of the day will be more joyful.

In my last visit with the doctor she encouraged me to take a medicine called Sucralfate. I confessed to her that I hadn't been taking it because it was too complicated. You see this medicine can only be taken one hour before you eat or two hours after. You also can't take it along with any other medication.

So I've been trying to watch my schedule more carefully to see if I can fit the medicine in more effectively. I'm supposed to be taking it four times a day so this is what my day might look like:

6:00 am Wakeup, take a pill
7:00 am Drink coffee
9:00 am Take another pill
10:00 am Eat late breakfast or early lunch
12:00 am Take another pill
1:00 pm Eat lunch
3:00 pm Take last pill
4:00 pm or later eat dinner
9:00 pm Take my daily meds

That's a pretty rigid schedule, especially for as forgetful as I am. I'm shooting for taking at least two dosages a day. So far, the two times I've taken it before my morning coffee, it seems like it has made my mornings better. Which is significant, because I can easily have 6 or 8 bowel movements before 10:00 am. We'll see how it goes...

This morning I captured through Twitter the experience of receiving a Remicade infusion. I collected all of the tweets together into this one post. They are listed in proper order from earliest to the last one. I thought it would be cool to pull them together. Remember each post is limited to 140 characters each.

I was going to capture my Remicade treatment through photos and then turn it into a comic book, but the battery went dead.


So I've decided to share the experience through Twitter. I've already made it to the VA hospital, checked in, and now I'm waiting.


I've got to wait while the pharmacy prepares the different cocktails of drugs they are going to pump into me this morning.


I have to do this every 8 weeks to keep my Crohn's Disease under control. This is what is called maintenance therapy.


I'm in maintenance therapy because they haven't (hope, hope) found a cure for Crohn's. Remicade is an immunosuppressant.


The current theory is that your body attacks your intestines, just like it might any foreign body it found inside your body.


While waiting, I took the opportunity to grab a little breakfast, now I'm back to sitting around.


The Remicade is supposed to reduce my immune system's response, which scientists believe are the cause of the inflammation in my intestines.


Just called me in to the laboratory room to get settled.


Well I'm all set now. They put in the IV line and connected me to the EKG to monitor my vitals. They've got a saline drip started.


I've also got my iPod set to jam out to Metallica's Death Magnetic throughout the procedure. Later they'll start the pre-meds.


Forget to mention that Remicade is done through an infusion, not an injection. In all it's about a four hour process.


The pre-medication consists mostly of Benadryl which helps prevent an allegeric reation to the Remicade.


The Benadryl usually males me pretty sleepy, so after the pre-meds start I usually go under. I wake up every now and then.


So I hope to get a few updates out after the Remicade starts.


They just started the pre-meds. The other is Solu-Medrol to help fight inflammation, in case of an allergic reaction.


It burns my arm a little.


Pre-meds are in, and I'm started to feel little buzz. A little light headed, but really it's a small little treat. Starting to get drowsy.


Oops, it was the first one that finished, now the second one is dripping in.


Funny taste in my mouth and a little dryness too. It must be Benadryl.


Forget to mention that this all takes place in a hospital bed/gurney. "Bow down!"


I finished the second pre-med. Man once the meds start to flow I always feel so cold. I have a nice blanket and jacket to help keep warm.


They started the Remicade infusion, which uses a pump to infuse the meds into your blood. Not too drowsy yet.


The nurse overheard Metallica and chatted a little about the upcoming concert.


Trying to relax, to see if I'll get drowsy. Maybe the tweeting is keeping me alert. I hope not because sleeping helps the two hours pass.


"What don't kill ya, makes ya more strong!" Readings from pump: Infliximab 8.89 mg/kg - 125


How long was I out? I guess I was able to relax enough to fall asleep. Looks like I still have about half left.


I've listened to Death Magnetic twice now, so I'm switching to Metallica's S&M. Oh yeah!


I'm starting to have the urge to urinate, With all the liquids going directly into my blood tend to fill my bladder rapidly.


Still about an hour left, I think.


Beep! Beep! Beep! That's how the pump informs us that the bag of Remicade is done. Off with the monitors and I'm done.


Still not done yet. After collecting my things, the first stop is in the bathroom to empty my full bladder.


Now I have to eat a little snack. A plain ham and cheese sandwich and some grape juice. It's so dry I dip it in the juice so I can swallow.


Finished the snack, but I still have the IV line in. I'm feeling normal, so everything seems to have went well.


They pulled out the IV, checked for my pending appointments, and I've been released. After a while I'll start to feel run down.


It's like blah. I guess it must come from my body absorbing the Remicade. I'd compare it to chemo-therapy, just not quite as nasty.


Waiting here in line to get paid for my travel expenses; I'm feeling a little sick to my stomach. Could be I need to go to the bathroom.


Heading home now....

Next time, I'll make sure the battery is fully charged on the camera, so I can try to capture all of the images needed to reproduce the experience in comic book format, except using photographs. At least I have most of what I would need to write the script from this tweet record.

This morning started just like any other
But after my morning coffee
I was starting to get a little hungry
And lately, I haven't really felt like cooking
So I made myself a bowl of cereal
with slices of a banana

Almost instantly
I began to have severe cramps
I mean they were purge like cramps
They lasted three or four bowel movements
But they were enough to put me on my back

I couldn't help but thinking
that my colon felt like one giant burn
but on the inside
and every time I had a bowel movement
it felt like the burn was being scratched
by long fingernails
and so it went
for about half and hour
before I collapsed asleep

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

You may see me run to the bathroom
You may see the anguish creep over my face
You may see the goosebumps suddenly appear
But you'll never know the dread
I feel when I get the instant urge to defecate

You may see me emerge from the bathroom
covered in sweat
and walking as if I wore lead boots
You may see me swallow a handful of pills
You may see me starve myself
to prevent an "unpleasant" situation
But you'll never know what it feels like
when you know
you're not going to make it
to the bathroom in time

You may see me with a twisted face of agony
as my insides twist and knot
You may see the scars carved into my stomach
You may see me today
and think I'm just as normal as you
But you'll never see me in the bathroom
eight times before I've finished my
morning coffee.

No, you'll never see me hunt through
bathroom stalls looking for a toilet
that isn't covered in piss
You'll never see me pinch myself
until I bruise as I try to squeeze
back the urge to purge my guts
But you should see my five year old daughter
caress my back and ask me if I feel better
You should see the world as I do when
my symptoms are absent for a whole day
Because I really don't want you to see
any of my suffering
when you look into my eyes
What I want you to see
is a small hand
less than half the size of my own
rubbing my back
and small child that is hoping
to hear that I feel better

If you'll promise not to tell her,
whether I do or not
I always tell her that I'm feeling
just a little bit better
only so I can hear the slight
rise of joy in her heart
which somehow
does make me feel
a little bit better

Last night I made a quick dash to the local convenience store to pickup up a few things. As soon as I grabbed the first item, I felt that uncomfortable pressure that can only mean one thing. I wasn't going to make it through my shopping experience without a bathroom break.

I made a bee-line to the indoor restrooms. By the the time I got inside and locked the door, I was past the point of no return. That was when I noticed there was no toilet paper or even hand towels. The only thing left to do at that point was to relieve myself and then figure out what do next.

I know it's gross and should make you really wonder where someone's hand has been before shaking hands, but the only option I could come up with was to wipe myself with my hand and rinse it off in the sink. I guess the other option was to just pull up my pants and head for home

I've encountered this and many other travesties in the 20+ years I've dealt with Crohn's. However, this experience begs the point, will there ever be special laws made to ensure better bathroom facilities for Crohn's patients? According to all definitions, I'm disabled, from the Veteran's Administration and from Social Security. So special accomodations for conditions should be required, right?

While various laws now require stores to provide special parking spaces and ramps to enter stores, shouldn't they also be obligated to keep their bathrooms in optimal working condition? I guess the question comes down to whether the Crohn's and Colitis Foundation has enough political clout to apply any pressure on congress to do anything about our suffering.

Photo Courtesy of Flickr Creative Commons: Rooney.