Training Interrupted

Training: Week 3, Day 2

Distance: 0

Length: 0

Power Song: Music from The Piano by Nyman

I spent this weekend with a general pain that by Sunday night had upgraded itself to needing Darvocet. Monday morning wasn't much better. And this is the part that enrages me.

Do I go to work? If I go to work, everyone will ask how I feel because I don't look well. What do I tell people? Laypeople can't handle the truth of my health, it's an uncomfortable topic unless it's going to end with a crude punch line. But if I stay home what do I tell my boss? How many times can I call in sick, before it becomes an issue? Will I become part of the working population that is not promoted because of my colitis? Worst yet, I live in Michigan, what happens if I lose my job because of my colitis? My job provides the insurance. What happens if I lose my job and we lose our insurance? No insurance covers me because of my pre-existing condition, and the ones that do cost an outrageous amount.

Ultimately, I call in sick. My abdomen is too swollen to fit my work pants and I can't stand up straight.

Pain plus swelling equals a call to the doctor. But which doctor do I call?

My primary care physician? Maybe I just have gas.

My OBGYN? Maybe I have really bad PMS.

My surgeon? I don't want to see him. Seeing him means there might be a complication. The pain isn't like it was last year when I was blocked, but it's not very far away on the pain scale. My food is still moving, so I can't be blocked. But my abdomen is swollen. And it's my former ostomy that's radiating the pain.

Common sense prevails and I call my surgeon, who slips me in for Tuesday afternoon.

I hate this. I'm not able to function effectively at work, but I'm aware enough to be bored at home. I can amble downstairs to put in a load of laundry, but pushing the vacuum cleaner requires too much abdominal strength. The dog is thrilled that I'm home, but wants more than petting. Eric sees me home and is worried we'll be in the hospital soon. Someone calls me to do something tonight and I have to give out the lame excuse that I'm not feeling well.

I missed my ride on Sunday and Monday was a planned recovery day. Today is going to be another recovery day, but not the kind that I want.

It isn't the pain that frustrates me. If it was only pain, I can plow through that. It's the constant weight of deciding how much to tell people, who to call and finding something to do besides watching the stupid box (TV).

I feel trapped.

Openly talking about about my health is not 'smart' career wise and socially unacceptable. But not talking about it makes me a liar. I have to talk about it. I'm an open person. When someone looks at me and asks, "Are you feeling okay?" Instead of saying, "I'm tired." I'd rather say, "Well, my watery diarrhea kept me up last night, so I guess no more watermelon for me!"

Well... maybe I should work on fine tuning that last one.

Michigan's Bathroom Bill

Training: Week 3, Day 1

Time: 0

Distance: 0

Power Song: Hard Sun by Eddie Vedder

My husband Eric is a commercial fisherman and today he was working in Leland (Fishtown). Leland is three hours from our house, so I rode along. I brought my bike with every intention of putting in a two hour ride, but I didn't get that far. Yesterday I was having some pain at the site of my former ostomy. Today it has increased. I've had pain there on and off since my surgery, and within the last year I discovered that my small bowel has adhered to my abdominal wall; however, my understanding is that this isn't something to worry about until it causes problems.

>Today, I'm not sure what is causing the pain. I did decided that unknown abdominal pain, plus unknown area, plus husband out to sea and unreachable for several hours, equaled a high probability of me ending up in the emergency room. So instead I wandered around Fishtown.

I have to admit walking around Fishtownincreased my anxiety level. There are NO public restrooms. The historic fish building do not have bathrooms, which is historically accurate, but there are no other bathrooms, even in the shopping district. The only public restroom is under demolition, and rumor has it when the construction is done the bathrooms will only be open to marina members. The restaurant where we ate actually locked the bathroom and you had to ask for the key-- at least McDonald's has an open door policy!

ANXIETY!

One of the most frustrating changes to my life has been the constant need to know the location of all bathrooms. I know all the best roadside bathrooms along I-75, plus the ones that I need to bring my own T.P. and hand sanitizer. For road tripsI plan extra travel time for bathroom breaks.

The State of Michigan did take steps this year to help relieve bathroom anxiety for Crohn's, colitis and other IBS patients by passing the Restroom Access Act.

Effective March 31, 2009 retail businesses must provide access to an employee restroom for Crohn's, colitis, IBS or ostomy patients. You do need a note from your doctor stating your condition, and there are a few provisions, but in general if you gotta go, they gotta let you.

Visit http://www.legislature.mi.gov/documents/2007-2008/publicact/pdf/2008-PA-0469.pdf for a copy of the bill.

How to Mess Up Your Post-Colectomy Reversal Recovery

Training: Week 2, Day 5

Time: 2 hours

Distance: 23.76 miles

Power Song: Lights by Editors

I know the picture on the right hand side isn't the best-- my eyes are closed, and well it does look like I'm squatting, which I'm not, I may be open about my colitis, but only within legal limits. Like my Dad I carry a camera with me a lot. However, as you can see from his other work on this blog, D.W.B. is a true artist and captures the good, the bad and the ugly- mostly the ugly when I'm the topic.

Myself, I'm more commercial and prefer pretty things, or at least not bad looking poses. This was the best self portrait I managed on this trip, as a side note it is incredibly challenging to balance a camera on your bike helmet. Periodically I'll post photos that I take while I'm training. I stopped for these photos because the roses growing on the side of the trail were, well... pretty.

January 5, 2004--After my take down surgery I did a lot of pigheaded things. The first was taking a student teaching position. I wasn't even suppose to student teach until the following fall-- I still had one education class and two history classes for my minor left to take. But exceptions are made everyday, and this was huge exception that had a lot of political force behind it with me as the head mast. While the placement was ideal for me-- working with at-risk youth-- and the condition one I flourished in-- my advising teacher said 'see you later' after week one-- in no way should I have been there. Between classes I was be in the bathroom vomiting. My students, most of who were recovering addicts, looked better than I did.

On top of that, a condition to my early placement was that I had to take my remaining education class, while I was student teaching. Oh yeah, I was also still finishing up one class from the fall semester-- I'd managed to finish 14 of my 18 credit load before I left for surgery, but I still had that pesky four credits left to finish up.

My second biggest mistake began the day I went into school really not feeling well--- I mean super not well. I went home before classes even began. I barely got myself home before the pain was throbbing through me so strongly it knocked me to my knees. I don't remember calling my best friend, or her 110 pound body pulling my 200 pound one to the car. I don't remember her screaming at the nurses to let her into my room. I don't remember seeing my three other friends, who were also in the waiting room, all of them asking to see me.

I do remember feeling like something had exploded inside of me. I remember the doctor telling me not to scream, I was upsetting people. I told him I'd stop screaming, if he'd stop poking me. I remember telling the ER over and over again that it wasn't my colitis-- I didn't have colitis anymore because I didn't have a colon.

I said over and over again to call my surgeon in Grand Rapids. Instead, they called their surgeon who told me that if he cut me open, he'd be remove more intestine. That's when panic overtook me-- Was my pouch failing? Was something leaking? Would I have to have a permanent colostomy bag? This is the point when the ER decided it was time for me to have more drugs.

Very few memories stick with me after that extra dose of feel good juice. My dad on the phone telling me they were going to fly me to Grand Rapids, even in a drug haze I could tell from his tone I was in trouble-- not medically speaking either. Seeing my parents at the end of the hallway as the aero-med team rolled me into Spectrum Health hospital.

And finally, the aero-med nurses staying with me until Spectrum's nurses took over. All the areo-med nurses wore brown bomber jackets-- or maybe I just imagined they did-- and when they left one nurse gave me a look, and I knew it was a look she reserved for the truly sick, people that she felt she could let her guard down around and show this look, because she wasn't sure the person was going to make it.

I remember that look. And thinking, "Screw you bitch. I'm not sick. I just need some extra sleep and painkillers.

**Please note that my emergency transportation that night was provided by Wings of Mercy West Michigan, Inc. Wings of Mercy is an non-profit organization of volunteer pilots, nurses and other medical professionals who serve their community by providing FREE emergency air transportation to patient with limited income. If you or someone you know could use this service, please visit http://www.wingsofmercy.org/ for more information. More importantly, you can sponsor this organization by visiting their web page.

Peace is a Fully Stocked Bathroom

Training: Week 2, Day 4
Time: 1.5 hours
Distance: 18.67 miles
Weather: 56 and sunny
Power Song: Wolf Like Me by TV on the Radio

My plan is to blog everyday that I train. It's during this time that I think the most of my life with colitis. That's why my postings fluxuate between the past and present. This window of time gives me permission to feel sorry for myself, because let's face it life with a chronic illness isn't up lifting, I don't care how positive your outlook is. Trust me, if willing yourself into health was all it took, I would be an Olympic Healer.

So when I'm on my bike I think about all these things: Why me? Why my family? Why? Why? Why?

Sometimes I'm overwhelmed with anger. And sorrow. And I grieve.


But then after I dwell on my questions, I drop them along the roadside. Because the answer to most of my questions is simple:

Because that's how my life has played out.

I could continue to carry all of my angry, resentment, and fear with me. But I have a lot of training hours to put in for Get Your Guts in Gear, and those emotions are heavy. And they are holding me back. And I'm ready to shed them along the road, because after eight years I'm ready to embrace a simple truth:

Colitis is something that happened to me, it's not who I am.

Caught in the Bathroom with No Toliet Paper

Thoughtful Dad- always there to capture the priceless moments.

November 18-27, 2003 is an opium induced haze for me. Only flashes of my time in the hospital have stuck with me.

There was a nurse that reminded me of a really bitchy Elton John.

There was a really nice nurse that wasn't very knowledgeable, but she was nice so it got her far.

And then there was a really knowledgeable nurse that figured out I was vomiting because I was allergic to morphine.

My friend Nicole came to visit and put her newborn baby on the bed next to me and I remember thinking that wasn't a good idea.

On Thanksgiving Day I was told I had to eat solid food and hold it down for eight hours before I could go home, so I choked down 5 spoonfuls of mashed potatoes and 3 bites of turkey then made myself hold it down so I could go home. I threw it all up in my parent's driveway.

My memories of my first week home aren't much clearer. My father missed my brother's college graduation because I spiked a temperature before the ceremony and someone had to stay home with me. Even though Gabe is younger than me, he still graduated from college first. He was the first to graduate from college in my family, one of my Dad's greatest desires, and he missed it because of me. To this day I wish I take back everything and give that moment back to my Dad and brother.

People came to visit, but I didn't want to see them convinced they'd ask to see my colostomy bag. Or worst yet, notice I had a colostomy bag through my clothes. I spent a lot of time vomiting.

And then something went wrong with my ostomy. The skin around it burned and my bag wouldn't attach solidly to my stoma. My ostomy nurses discovered that my stoma was leaking and digestive fluids were burning my flesh.

Normally, a total colectomy with an ileoanalpouch patient is given anywhere from four months to a year to heal before their colostomy reversal surgery. Not me. My surgeon determined that making repairs to my stoma would be just as traumatic to my body as taking it down.

Four weeks to the day after my surgery I had my "take down". That was the earliest possible date for a safe take down.

Having my take down early was a good/bad thing for me. A colostomy bag was very damaging to me mentally. It was a constant warm, mushy reminder that my body was no longer normal. I didn't want to turn 24 with a colostomy bag. It is the height of unsexy. The take down greatly improved my disposition.

The bad part about my early take down was that I didn't have that reminder pressing against my body, reminding me that, "Hey, you just put your body through hell for the last three years, and are recovering from major surgery. Take it easy!"

Without a colostomy bag, I could ignore what was really going on with my recovery. Oh, course I was sore, I had a six inch incision from my navel to my pelvis, but that's was just muscle soreness- athletes experience soreness during training. Yes, I was in the bathroom every 45 minutes while my small intestine adjusted to being the superstar of the digestion tract- but that was nothing new.

So when I got a call from my college advisor telling me there was an opening for a student teacher at a brand new alternative high school, during its opening semester, and it was mine if I wanted it-- despite that fact that I was recovering my major surgery-- I took it.

December 16, 2003- Colostomy reversal surgery

December 29, 2003- Turn 24

January 5, 2004- Begin student teaching

Get Your Guts in Gear

Before we dig to much farther into my Angry Ass story, I feel I should be clear as to why I'm even blogging, because let's face it this is a really embarassing part of my life.

I want my children to have drug therapy options that will work for them, no matter how sick they are. I want the scars that I carry to never touch my grandchildren. I want my epithet to read, "Colitis' Last Victim".

To make this vision come true I am participating in Get Your Guts in Gear, a 3 day 210 mile bike ride to support Crohn's and colitis. The money and awareness that Get Your Guts in Gear raises puts the Crohn's and colitis community one step closer to reaching my vision. So I'm going to train. And blog. And talk. And recruit. And raise money. I'm doing all of this so others will not bare the scars I have.

Training

Training: Week 2, Day 4

Length: 1.5 hours

Distance: 15.4 miles

Weather: 67 and sunny

I decided to participate in Get Your Guts in Gear on May 7. I had been in Chicago with my friend Danette to see Lenard Cohen perform (amazing show!). While we hoofed it around downtown Chicago, we talked about Danette training for a marathon. I'm not a runner. There is nothing I like about running. B.C. (before colitis) I was training for a "triathlon", but hated the running so much that I only swam and biked. Talking with Danette did make me realize how much I had enjoyed endurance training.

However, I'm not someone who just jumps on a bike and goes because I enjoy the ride. No, I really do much prefer sitting on the couch with a dark chocolate bar watching Bones marathons. I need a goal to pedal towards. After Chicago I was on the Crohn's and Colitis Foundations of Amercia's ( CCFA.org) web page to see what was new in the Angry Ass community and came across the Get Your Guts in Gear site. That was it. I registered and jumped back on my bike.

Get Your Guts in Gear was kind enough to send me a training program, which is great, because I really did sit on the couch, eat chocolate and watch Bones marathons for most of the winter.

Last week, my first real training week, was brutal. My thighs felt like fish hooks were latched into them slowly putting the muscle fibers apart, I was tired and hungry. But I slept really, really solid, which had my husband humming Hallelujah. Normally, I'm a tosser and a turner.

Now that I'm into Week Two my body is actually starting to enjoy the time on the bike. The first 15 minutes are always the hardest for me, during any part of those first 14 minutes 59 seconds I could turn towards home, my couch, chocolate and Bones. But after the 15 minute marker my body just goes, and my mind opens up.

It's during this open time that I gain peace with how colitis has and continues to impact me.

My Angry Ass Story: Number Two

2002 to 2003 -- After my 21 st birthday my body was literally going down the toilet. The picture above was taken in March 2002. Let's just say I wasn't looking my best. About two weeks after this picture was taken I started taking prednisone and never really stopped taking it for the next two years.

I tried to live a normal college student's life, ignoring that "normal college students" didn't have bi-monthly sigmoidoscopies, bi-yearly colonoscopies and a medicine cabinet full of legal drugs.

I stopped biking, just walking to class with a full book bag was to much of a work out for me. The pred did stop my bleeding, but it also made me retain water.

Eventually, I couldn't fit my clothes, but it didn't matter since I'd really stopped dressing myself-- tattered grey sweats were my daily uniform.

I stopped going out with my friends.

I couldn't sit through a 90 minute class without using the bathroom.

I argued with my parents about how I should be treated.

I argued with my doctor about how I should be treated.

I ignored both my parents and my doctors. My life as I knew had taken an nasty turn.

The next two years for me are fragmented. I can't accuratelytalk about them, because I don't remember them for the most part. I knew I wasn't myself and was making pigheaded ignorant choices about my health and life. The parts I do remember I wish I didn't.

Crystal clear me is the memory of me waking up from my last colonoscopy by my fourth doctor. I'd already blown through three doctors, including the Mayo Clinic. Point blank he told me,

"I won't treat you. You are beyond repair and you are either going to loose your colon to cancer, or you can make the choice to loose it now."

And that was it.

November 18, 2003- Total colectomy with ileo pouch

My Angry Ass Story: Number One

December 29, 2000 I turn 20!

December 30, 2000 my first symptoms of colitis appear.

I was a sophomore at Northern Michigan University (Marquette, Michigan's Upper Peninsula). Since I was over 400 miles away from my family, it was easy to ignore the bloody toilet bowl water. I was also a resident advisor, which gave me a private bathroom, so it was even easier to ignore the ghastly smells I produced after my frequent bathroom trips.

After two months and one episode of pooping my pants later, I broke down and went to the ER. At the time I was positive something had ruptured inside of me and I was going to bleed to death. The ER doctor diagnoses me with clostridium difficili, a gastrointestinal bacterial infection. That was the beginning of my struggle with Angry Ass (aka ulcerative colitis).

Summer One of Angry Ass was actually one of the best of my college years. It was the first summer I lived on my own. My colitis wasn't debilitating yet-- in fact, thanks to the heavy course of antibiotics treating the C-Diff infection, I was able to ignore my bloody stool for several months. I did have frequent conversations with myself that sounded something like this:

"No, that isn't blood-- I just ate strawberries/watermelon/cherries/red sucker/licorice/kidney beans/jelly beans."

My summer employment was 'security guard' for campus housing. Basically, I lived in an empty dorm and made sure the doors were locked at night. I was only on duty every other night, had free housing and a meal plan. It was the BEST job ever! I took one class and spent the rest of the time goofing off.

The biggest part of my goof of time was spent on a bike. The U.P. has some of the best mountain biking in the U.S. I was able to leave my room and be on a trail two minutes later. I wasn't hard core-- learning to bunny hop was my biggest accomplishment!-- but it was an awesome way to spend the summer.

When classes began in the fall everyone asked how I lost so much weight. I credited it to vigorous biking and a diet of green beans, rice and chicken breast from the school cafeteria. My pale complexion was a non-issue-- the U.P. in buried under snow and ice for nine months, no one is tan.

My body eventually wore down and I passed out in the shower at my parent's house during Christmas break. That was the big unveiling to my family of how sick I really was-- not that they hadn't noticed I was 1) pale 2) lost 40 pounds in four months and 3) had everyone in town asking if I was sick.

My green bean and exercise story wasn't fooling anyone who'd known me since the womb.

December 16, 2001- First blood transfusion

December 29, 2001- 21st Birthday

December 30, 2001- Second blood transfusion