Traveling with IBD – Poopin’ at 35,000 Feet

I’m back to blogging after a hiatus of wedding planning, house planning and traveling.  During this hiatus, I celebrated the 8 year anniversary of my colectomy surgery (April 23rd).  I can’t wait until my big 10 year anniversary in 2014.

After 5 years of suffering from Ulcerative Colitis, I consider myself extremely fortunate that for the past 8 years I have been “cured.”  Don’t get me wrong, I certainly have had to adapt, adjust and cope with some issues.  But by and large, living without a colon has been much more controllable than suffering from the daily grind of UC.  I don’t mean to appear as braggadocious, just trying to express my fortune.

A week ago, I flew to Atlanta for a wedding (not mine).  Let’s face it, traveling today is full of stressors – busy airports, long security lines, baggage limits and fees, delays, disgusting people on the flight.  Now add on top of all of that the worry of having to run to the bathroom in the airport and on the plane mid-flight.

Despite my colectomy, I still worry about traveling.  I eat carefully before I fly; I time my bathroom visits to the flight schedule; I sit anxiously wondering how much longer until we land or will I have to use the dreaded lavatories.

Oh, speaking of lavatories, on the flight to Atlanta, I flew Spirit Airlines for the first time.  It was certainly a low cost airline that nickels and dimes you for everything.  I was afraid to sneeze on the flight, much less, have to use the lavatory because of the fear that they would charge me for it.  Well, they don’t, but I wouldn’t be surprised if they eventually tried (Spirit is famous for doing things regardless of legality and government authorization).

Does anybody else people watch at the gate or on the plane wondering who else has intestinal issues and also hates flying?  Maybe that’s just me.  I can’t be the only one who think that the stewardess blocking the plane aisle with the drink cart is an IBDers version of a claustrophobic being locked in a tight place.  And if you do have to run to the lavatory when the stewardess is blocking the aisle, don’t tell her, “Move out of the way or else I’m going to explode.”  She and the other passengers may take that phrase a little differently that what you’re intending.

So traveling with intestinal issues sucks, but it’s a necessary means to an end.  In the meantime, keep your feet firmly planted on the ground and your butt cheeks tightly clinched.

Play Ball! But IBDers Beware…

Cut the grass, paint the white lines and water the dirt – Baseball season is finally here!!!

But for those of us who battle from IBD, a trip to the ballpark to watch a game can come with more stress than pleasure.

There’s nothing more American than baseball, beer and hot dogs.  However, whichever stadium you visit these days, a hot dog and

The Gateway Grizzlies of East St. Louis in the independent Frontier League offer their fans the Luther Burger, which uses a glazed Krispy Kreme donut as the bun.

beer are just two of 100 different items on the menu.  The problem is that 99.9% of those menu items are not IBD-friendly.  Bratwursts with mustard and sauerkraut, nachos with jalapenos and chili, pizza with grease and more grease.  While all of these things taste good going down, they could spell hazard coming out for IBDers.

Just to prepare you for the upcoming season, here is a list of the best and worst stadium foods across the country.  The Texas Rangers just introduced the Champion Dog for the 2012 season.  It’s a 2-foot long hot dog for $26 – talk about intimidating.  If the Minor Leagues are more your thing, here is a list of the top 10 foods at Minor League stadiums around the country.  By the way, #5 is the BBQ nachos at Autozone Park in Memphis – been there, done that, paid the price.

Like I said, all of these foods taste good going down, but any IBDer will probably pay the price.  And what does this mean?  Well, I think you know.  The real problem is having to share a bathroom with 50,000 other beer drinking fans may not be the most appealing situation to be in.  It may take a few laps around the stadium and some scouting to find the optimal bathroom experience, but sometimes you have to do what you have to do.  If you have to, go to the game with a plan and don’t eat too heavily before or during the game.  The negative side of this is after the 4th inning, you’re usually starving.  So find something that won’t send you racing off to the restroom faster than Ricky Henderson around the bases.  My advice: stick with a good old fashion hot dog.  And maybe mix in a pretzel if you’re feeling up to it.

In the meantime, there’s nothing else to do except sit back and enjoy the start of a new season.  Play Ball!

Reflections of a Packrat – Me & My Bags

I am a self-proclaimed packrat – there’s no doubt about it.  Now just to clarify, I’m not a hoarder; I just like keeping things that may mean nothing to most people, but remind me of something that I don’t want to forget.  Recently, when rummaging through my closet, I came across a box that was labeled Crinkled Cut Potatoes on the sides.  I can only assume that this is what the box was used for prior to my acquiring it.  But I carried something much different in the box eight years ago and still keep those same items there today (luckily these items aren’t perishable like crinkled cut potatoes).

When I was 21 and had an ileostomy, I stored all of my ostomy supplies in this box – my bags, wafers, paste, clips, towelettes, etc.  After pulling the box from the highest shelf in my closet, these items were still there, almost eight years later (it’s hard to believe I’ve had a J-Pouch longer than I actually had Colitis).  I remember having to change my bag every few days and clean my stoma in my college apartment during my Senior year.  I remember walking across campus and reaching to my abdomen to assure that the bag was still attached and not filling too quickly.  I remember changing in the baseball locker room with my teammates who would always look in curiosity (I have to say, they were all good sports about it).

For six months of my life when I was 21 years old and in college, my small intestine protruded from my abdomen.  On the outside, only a plastic bag covered it to catch what oozed out.  For these months, I was attached to these bags as much as they were attached to me.  While I am happy to function internally now with a J-Pouch, I would not be able to enjoy life now without experiencing those six months of just me and my bag.

An old manager of mine told me that in order to improve and move up in the job world, you have to force yourself out of your comfort zone.  This is true in life too.  For six months as a college student-athlete, I was forced out of my comfort zone having to socialize and participate with others who didn’t have an intestine sticking out of their abdomen.  The items in the box helped define who I was and how I lived for six months, which in turn, made me a better person.

The box of ostomy equipment has seen many moves across the country with me – grad school in North Carolina, first job in Memphis (a few moves there), and now Texas.  But it always takes me back to a time that I never want to forget and that’s why I can never detach myself from it – packrat or not.

Poopin’ At Work: An Awkward Experience

We’ve all done it – some of us more than others.  It’s a natural need and a fact of life providing much relief and joy when finished.  We’d all prefer to do it in private, but there are times when the urge overtakes and we just have to do it wherever we are.

In case you haven’t figured it out (or you have a dirty mind), I’m talking about pooping at work.

Often we spend more time during the week with our co-workers than with our friends and family.  But our tolerance and understanding of our co-workers only goes so deep as the professional level.  This is why something so personal as pooping at work – with co-workers in the neighboring stall or walking in and out of the bathroom – can be extremely awkward and uncomfortable.

Listening to the radio a couple months ago, the topic on this particular morning show was exactly this: pooping at work.  One woman called in and told the radio jockeys that she is so afraid that her co-workers would recognize her while pooping by her shoes on the floor of the stall, that she carries an extra pair of shoes just for pooping so her co-workers don’t recognize her.  Her “poopin’ shoes” is what she calls them.

It’s awkward walking into the bathroom with a co-worker and heading straight to a stall.  You’ve broken that “professional” barrier and now a co-worker knows your personal business.  Even walking out of the stall and seeing a co-worker, or worse, an Executive walk around the corner knowing that for the past few minutes you haven’t been working on that presentation due at the end of the day.

Right outside of the restrooms at work is the break area where people meet to talk and eat their lunches.  I’ve always wondered if the people talking outside of the restroom have stop watches you to see how long it takes for you to walk out of the bathroom.  Are they thinking, “That’s way too long for #1.  He must’ve been poopin’.”

Am I the only one who thinks this?  Have Colitis and a J-Pouch made me neurotic about this stuff?

In order to avoid the situation entirely, some people scout out the most private bathroom in the building.  While it provides a quiet and peaceful place to poop, unfortunately, it’s usually not the most accessible place.  What’s worse is when you make time to walk all the way to this “Mecca” of a toilet only to find someone else “on their pilgrimage.”  Not only does it throw a wrench into your schedule, but it also taints your utopic bias toward this special toilet.

So why is it that pooping at work is so difficult and awkward?  My only guess is that it exposes your private life to your professional.  Is the awkwardness and discomfort all in our heads?  If you have a good answer, let me know.  In the meantime, I may go look for some “poopin’ shoes.”

The Night Before My Colonoscopy – Loosely Based on The Night Before Christmas

Below is my take on the classic Christmas poem “The Night Before Christmas.”  I shortened it a little and took some liberties with the rhyming scheme, but I hope you enjoy it and Merry Christmas!!!

 

‘Twas the night before my colonoscopy, and on the latrine,

My intestine was stirring, from an enema of saline.

The toilet paper was hung by the toilet with care,

In hopes that it would be gentle on my bare derriere.

When the cleansing was over, I got snug in my bed,

While visions of scopes danced in my head.

My stomach a-growlin’, and my intestine on empty,

Those cookies downstairs were deliciously tempting.

When in my abdomen there arose such a clatter,

I sprang from my bed to see what was the matter.

Away to the bathroom I flew with a swoop,

Sat down on the toilet and had to poop.

The next morning I awoke to a new-fallen snow,

Which makes the toilet seat uncomfortably cold.

Then, on the way to the hospital, I squeezed my cheeks tight,

But the traffic was bad, and I used all my might.

Arrived at the hospital, accident free,

I was wheeled to the prep room for an IV.

The nurses soon rolled me back to meet my fate,

As they whispered, count from ten, about to sedate.

“Now ten! Now nine! Now eight and seven!  Now six annnnnd…..”

“He’s ready! Come doctor! He’s sedated as planned!

We will pump him with air! We will pump him with gas!

Now scope away! Scope away! Scope up his ass!”

As I lay there exposed to the doctor’s sure whim,

He poked and prodded and explored my intestine.

So amidst the work I awoke from it all,

And watched the procedure on the screen on the wall.

And then, my life changed as, the doctor professed,

The ulcers and scarring my colon’s a mess.

As he pulled on the scope, and withdrew from my ass,

I released a thunderous fart from all of the gas.

Rolled to recovery, I awaited the doc,

When he arrived he told me the news and the shock.

He said that Colitis was my diagnosis,

And he looked like a messenger, with the prognosis.

Then suddenly to his great disbelief,

I bellowed a fart, much to my relief.

That is the story of my first colonoscopy,

And how I was first diagnosed with UC.

An Ulcerative Colitis Thanksgiving from A to Z

It’s certainly been a long time since I’ve posted on the blog – 2 months and about a 20 degree difference in the Texas weather.  It’s hard to believe that Thanksgiving is only a few days away.  But I thought this was a good time to state everything I am thankful for as an ex-Colitis sufferer.

A -Antibiotics – Fighting off infections after my colon perforated.

B -Belt – For those of you who have had an ostomy, a belt provides peace of mind

C – Complete Colectomy – After a perforated colon, I wouldn’t be here without this procedure

D -Doctors – For their support, knowledge and many years of schooling

E – Emergency Surgery -Saving lives one incision at a time

F -French fries from Chick-fil-a while in the hospital

G – Girlfriend – For her support, knowledge and persistence to ensure I don’t eat too much chocolate

H -Humility – It always helps to have a good sense of humor when it comes to matters of the bowel

I -IV’s (intravenous) – Nothing like being poked in every inch of my body just to find a healthy vein

J – J-Pouches- Keeping it internal…

K -Kefir – Just kidding…

L -Liquid diets – When you haven’t eaten in weeks, nothing tastes better than a milk shake.  Though I am glad I can eat solids now at Thanksgiving dinner.

M – Morphine – Nothing is better after surgery

N -No More Steroids!!! – Need I say more?

O -Ostomies – Many people can say they’ve touched human intestines.  Few people can say they’ve touched their own.

P – Poop bags – My bag and I were inseparable for 6 months, though I can’t say that I was sad to see it go…

Q – Quality life – Ability to live a quality life after Colitis and surgery

R -Restrooms – Especially when they’re accessible and clean

S -Sister – Drove me to the hospital to get IV’s only to leave 1 month later without a colon

T -Toilet paper – The softer, the better

U – Ulcerative Colitis – It may be weird that I’m thankful for the disease, but who knows where I’d be today if I hadn’t contracted it

V -Vitamins – Making up for what I can’t get through fruits and vegetables

W – Walks through the hospital corridors – Even if I could only walk 50 feet after surgery

X – X-rays – Waking up in the middle of the night and being rolled down to the X-ray room only to find out I had a hole in my colon

Y -Youth – Helping me recover quicker from surgery

Z – Zipper Scar – All eight inches of it makes for interesting conversations

Thanks and Happy Thanksgiving!!!

Ally’s Law – Restroom Access Act

In 2005, a young woman with Crohn’s disease testified in front of an Illinois State Legistlative committee regarding the piece of legislation she had just written.  The committee passed the legislation unanimously, which then successfully flew threw the Illinois Senate and House.  Then Governor Rod Blagojevich signed the bill now known as the Restroom Access Act, or Ally’s Law, after then-teenager, Ally Bain.

When Ally was 14, she was shopping in a store in Chicago when her Crohn’s flared-up.  Panicking, she asked the store manager for access to the store’s restroom, which was designated for employees only.  The store manager refused and Ally was forced to find another bathroom as the pain and discomfort grew.  By then, it was too late and Ally’s digestive system “gave in” to the flare up in the middle of the store; she stood there humiliated.

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Whenever I go out in public, I silently scout the location of the nearest bathroom.  My eyes wind through the crowd to confirm the most direct route.  I despise signs on the windows of stores and restaurants saying “No Public Bathrooms.”  But in 2007, Texas passed a similar law allowing customers with an “eligible medical condition,” defined as Crohn’s, Colitis, IBS, or any other permanent or temporary medical condition, access to a retailer’s restroom facilities provided documented proof of the condition.  The exact text of the Texas act can be found here.  In addition to Illinois and Texas, 10 other states – Colorado, Connecticut, Kentucky, Minnesota, Michigan, Ohio, Oregon, Tennessee, Washington and Wisconsin – have enacted their own Restroom Access Act.

When I first became a CCFA member, I laughed when I saw the back of my CCFA membership card that stated “I CAN’T WAIT: The bearer of this card has a medical condition that requires him/her to use the bathroom facilities urgently.”  I thought this was a joke to lighten the situation of owning a CCFA card.  Instead, I found out that this card, along with other qualifying documents, serves as the ticket to access all non-public bathrooms in an emergency.  So dust off your CCFA memberships cards and don’t leave home without it!

NFL Quarterback, David Garrard, Inspires Fellow IBD Sufferers

When I landed in the hospital my Junior year of college with a flare-up, I really didn’t know much about Colitis, despite suffering from it for nearly five years.  I failed to research the disease and passed it off as something that I could control ignorantly through medication and monitoring.  Because of my lack of research, I didn’t understand how people adapted and thrived while living with IBD.  As a college athlete at the time, I laid in the hospital wondering if I would ever return to the baseball field after my severe bout and surgery. 

During that month in the hospital, I read an article in the local Winston-Salem newspaper regarding NFL quarterback David Garrard.  This article probably wouldn’t have been published in most newspapers around the country, but Garrard was from North Carolina where he also played college football (East Carolina University).  The article stated that the NFL quarterback had recently been diagnosed with Crohn’s disease.  As uneducated as I was about IBD, I knew that Crohn’s was Colitis’ ugly cousin that effected the entire digestive system.  Given the mental and physical stress placed on athletes, I wondered what this meant for Garrard’s career: the daily stress of preventing a flare-up or knowing your vulnerability would just build on his already pressured life. But my knowing that a fellow athlete, one who grew up and played not too far from where I laid in my hospital bed, was dealing with the same issues and asking the same questions as I was somewhat comforting.   

Since his diagnosis, Garrard has starred for the Jacksonville Jaguars.  Below is a short clip about his life with Crohn’s (it’s from 2008 but still relevant).

Has IBD Prevented You From An Achievement?

This isn’t a blog about regrets.  Afterall, like my previous posting states, we must turn the negatives into positives.  But all of us who suffer from IBD have had to sacrifice somewhere and somehow because of our conditions.

Colitis has forced me to adapt my life in many ways – diet, exercise, bathroom breaks.  Still I have participated in many activities that I wanted to do; I travel, work, and continue to exercise successfully.  But when I was 18, my Colitis prevented me from attaining a dream that I had always wanted.

Applying to colleges is a stressful time for high school seniors.  Nobody likes the competition and anxiety that goes along with the cliffhanger that consists of waiting for the acceptance letters to arrive.  My application to the United States Naval Academy was a process composed of multiple steps, each of which had the potential to disqualify any candidate.  I understood the process and that my Colitis was a potential roadblock in my application.

The first step in the process consisted  of an interview with an Army General, who interviewed all military academy candidates for my local Congressional representative in Missouri.  A month later I received official notification that my Congressman would sponsor my application to Navy.  Next in the process was the physical exam – a 5 part test that included push-ups, pull ups, long jump, a sprint and ball throw.  Points were awarded based on the results of each activity and I passed with flying colors.  Things were looking up so far but I knew my medical exam still loomed.  I traveled across the Mississippi River to an Air Force Base in Illinois to take my medical exam, which was essentially a detailed physical.  While the results of my exam didn’t cause any alarm, they still had to be approved by a board of examiners who would determine my fate of whether my Colitis would hinder my application. 

A month later, I received a letter in the mail explaining that due to the Colitis, my application to the Naval Academy had been disqualified.  I was heartbroken knowing that a disease which suddenly “appeared at my front door” without warning or choice a couple years before would prevent me from achieving a longtime dream. 

Hindsight is 20/20 and while my Colitis prevented me from attending the Naval Academy, I have certainly used my disease in positive ways allowing me to get where I am today and certainly I don’t regret that.

Turn the Negative into a Positive

I graduated from high school after dealing with a Colitis flare-up earlier that Spring.  My face was bloated and bright red with acne – matching the color of the tie I wore for graduation.  My body looked the same.  That Spring I had been on high doses of Prednisone and the effects certainly showed in my graduation pictures.  I loathed going to friends’ graduation parties when I didn’t look or feel like myself.  Everyone possessed the sense of freedom of completing high school and going off to college that every 18 year has, except for me: I was trapped by a disease and medication and my only hope was that three months down the road when I arrived on my college campus,  I would look and feel like my new classmates.

When I wasn’t flaring up, Colitis still roamed the back of my mind and impacted the decisions that I had to make: What colleges should I apply to?  Which one should I attend?  “I really like this one, but there isn’t a good medical center nearby in case I flare up” and “This college is alright, but it has a strong medical center” were the answers that my parent and I responded with even before I received responses to my applications.  Like I said before, unlike everyone else my age, I appeared trapped by a disease.

Reflections…

There were two occassions that I remember vividly from the Spring of my Senior year in high school when I was flaring up.  During the school day when I would feel the cramping start, I would drive home and spend the next hour on the toilet because I could suffer in the privacy of my own home.  Usually this would occur in the afternoon forcing me to miss classes.  After missing my AP Biology class multiple times, my teacher approached me to inquire about the reason for this.  As a high schooler, I was an extremely private person and rarely spoke with anyone about my disease.  But for some reason, I decided to tell my teacher, afterall, she did teach AP Biology so she would understand, right?  Well, to this day, I still don’t know if she did. 

The second occassion I remember occured during baseball practice after school.  In St. Louis, many of the early Spring baseball practices are inside because of the weather, as was the case on this day.  I was catching one of the pitchers when I suddenly felt cramping.  Right then I knew that I had to find the closest toilet.  Turning to go to the bathroom, I yelled at my sister, who knew what I was suffering from, to finish catching for me (she was the backup catcher on the baseball team).  I ran as quickly as I could stripping off my catcher’s mask and chest protector and squeezing my butt cheeks tightly to ensure I make it to the bathroom.  Thank goodness the bathroom was unlocked as I sat there for 20 minutes, with my catcher’s shin guards still attached to my legs, passing blood and trying to relieve the cramping.

Role Reversal…

As an 18 year old finishing high school and going to college, it sucks having to deal with Crohn’s or Colitis on a daily basis – whether you’re flaring up or not, it’s always part of who you are.  It’s difficult to open up to people about the disease (I still have issues and my story has been broadcast in newspapers across the Southeast) because you feel so alone in your suffering.  I realized that Colitis may limit me in some ways relative to other people my age, but suffering from it made me a smarter, more experienced and more responsible person.  The disease isn’t what sets you apart from other people.  What sets you apart is having to overcome daily obstacles and climb mountains that other haven’t in order to get to where you are.  And that’s what people will remember about you.