Gears and Guts Both Need Liquids to Keep Moving

My bike chain derailed today-- OPI's Aphrodite in a Pink Nightie partners well with Gear #2 Grease, don't you agree? Training: Week 5, Day 1

Distance: 25.23 miles

Time: 2 hours (exactly!)

Weather: 68 & breezy

Power Song: You, Me & the Bourgeoisie by The Submarines

And the heat wave is finally over! Michigan's weather has been terribly inconsistent for June. Cooler weather in June is normal for us, but usually it's a little warmer than the low to mid 60s. Then last week's temperature spiked to the mid 80s with heavy humidity.

I didn't feel all that well last week-- I was more exhausted and my heart felt like it was pumping lead instead of blood to my muscles. It was a different kind of tired than what I've felt before. It makes me wonder if I was suffering from a little heat exhaustion.

I carry plenty of water when I ride and drink a lot of fluids throughout the day, but when you go from riding in 68 degree weather to 86 degree weather, your body has a harder time adjusting-- especially if you are not a seasoned athlete. Especially if you are not a seasoned athlete, that is also minus your large intestine.

Fun Body Function Fact: The colon is the last part of the human digestive system. It's primary job is to store waste, reclaim water, maintain your body's water balance and absorbing some vitamins (e.g. vitamin K).

Implication: If you don't have a large intestine, it's harder to stay hydrated.

Day to day I drink an average of 2-4 cups of coffee, 1 1/2- 2 liters of water and 1 glass of milk. Last summer I was in West Virginia for a week and upped my water intake to 2 liters of water, plus a couple of glasses of juice and still had a hard time staying hydrated. A fellow patient of my colon rectal surgeon is a marathon runner. My doctor is amazed that he is able to stay hydrated long enough to run 26.2 miles.
The biggest problem I have with staying hydrated is that I can only drink so much before I'm water logged. I have also started to crave soda, whereas before it was more of an occasional treat. I think my body wants the added salt and fluids.

I've always regarded power drinks as something for wannabes and extreme athletes, you know, the Lance Armstrongs of the world. But I think it's time for me to look into them and see if they need to be incorporated into my daily intake.

Let the Healing Begin

Me and the girls three weeks after I'd withdrawn from student teaching. The exposure is a little off in this photo, but only a litte. The sad thing is my color had improved by the time this photo was taken. Training: Week 4, Day 3

Distance: 13.04 miles

Time: 59 minutes

Weather: 83 & Humidity 57%

Power Song: Bicycle by Queen

April 2004- So now what? How does one go about healing?

Do you sit around on the couch, watching television and let your body go at it? I can't do that, I'd die of boredom before the week was out.

Do you start out with slow walks along the river listening to Enya? Okay, time to reveal a deep dark secret that's even more embarrassing than my Angry Ass issues. I own every Enya CD, including holiday specials.

Do I clean out the self-help section of the library? I do read a lot of 'relationship' books... but usually my 'relationship books' involving a dashing lord and a brave heroine in a great dress.

Do I call one of the 1-900 physic hot lines? This one is out. I don't have a job and I don't think I can mow enough of my Dad's lawn to make up for one phone session.

Maybe following a 12 step program would help: Step One: I admitted I was powerless to my disease and that my life was no longer manageable. Check. Step Two: I've come to believe that a power greater than me could restore me to sanity.... Okay, well I don't think I'm insane, so does this one really apply to me? I guess the 12 step program is out.

I'd been in denial for three years and now that I'd accepted that I was sick, I didn't know what to do. Worst yet, I'm not a person of inaction. 'Just being' is a mindset that has always been incomprehensible to me. Concepts don't 'sink in' with me unless I'm distracted by something else. For me meditating leads to brooding, which leads to over thinking, that then knots itself into a complex bitter little ball. No sitting around my parent's house, watching television and 'just being' for the summer was not going to work for me. But I was too sick to lead my old life. So where do I go?

And within hours of moving back in with my parents my denial morphed into anger.

When It's Time to Go, It's Time to Go

Photo taken on Thursday, April 4, 2004, my last day of student teaching.

Training: Week 4, Day 2
Distance: 25.3 miles
Time: 1 hour 53 minutes
Weather: 80 w/ 60% humidity
Power Song: Supermodel by Rue Paul (If you've hesitant about Rue Paul I recommend listening at mile 12 of 25 as you are tackling a hill).

Today's photo was too gruesome for even me to publish. I was late getting started this morning and didn't leave until 11 a.m. There was a nice breeze blowing off from Lake Michigan, but the skin on the back of my knees kept sticky to each other. Not a pretty sound or sight.

I realize that I left my Angry Ass story hanging with the post Living in a Toilet Paper House While It's Raining (June 13). Since my only thoughts today were, "Keep pedeling, keep pedeling, keep pedeling", this is a good place to continue with my story. Also, after some feedback I discover that it may be confusing to tell when I'm talking about present events versus past events. Anything that happened in the past will be dated and be in italics.

April 5, 2004- Despite my major realization that I was indeed sick and probably in need of some serious rest, I returned to student teaching. I went back because I really didn't know what else to do. I like security. I like being in charge of my choices. I'm a control enthusiast. Accepting that I was going to have to change my master plan and move forward with a plan that I had no say in was unsettling to me. So I returned to my classroom not sure what I was going to do, until a student, who had several vices, looked me in the eye and said,

"Amber, you look like you shouldn't be here." (Students were allowed to call teacher's by their first names, in fact, my students didn't even know my last name.)

That night I called my parents and made arrangements for them to come get me. I then called my university advisor and told him I was withdrawing. I couldn't finish out the last three weeks. He was very supportive. However, I couldn't make that last call to my supervising teacher to tell her I was leaving. I knew she'd try to guilt me out of it. Maybe that's why I called my parents first. They were the fuse for this change of events, once they started there would be no going back. In the end my mom called for me. It was easier than I thought it would be to allow someone else to think for me.

That night I had two calls from people I worked with at the school, all trying to talk me out of leaving. They said things like, "You'll regret not finishing." "You are so close, just tough it out."

I finally got mad. Really mad. How dare they question my right to get better. Sure, I'd abused myself to the point of exhaustion, but they had no right to call me and try and talk me into staying. Where they not listening at the staff meeting when I talked about my emergency air ride to Grand Rapids? Did they not hear me vomiting in the bathroom and see the dark circles under my eyes? How can they be supportive of someone that has fallen off the wagon four times, but have no compassion for me?

Looking back I realize that my angry was also self anger. How dare I question my right to get better. Was I not paying attention when I was aero-medded to Grand Rapids? Did I think it was normal to vomit in the bathroom between classes? Did I think the dark circles under my eyes were typical for student teachers? How I could I encourage teenagers to keep working at their own problems, when I couldn't even take care of myself?

Summer Haze

I'm looking glam as usual, but compared to Mother Nature I'm a sweaty, red faced couch potato.

Training: Week 4, Day 1

Distance: 20.7 miles

Time: 1 hour 38 minutes

Weather: 87 & HUMID

Song: Cowboy Dan by Modest Mouse

Training today was like riding a stationary bike, in front of the oven, while wrapped in a wet sheet. Despite the humidity I had a solid ride and covered a fair amount of miles. In fact, I was supposed to ride for two hours and my planned route wasn't long enough. I'm getting stronger and the distances are becoming longer. It's amazing how quickly my body is adapting-- remember I'm a dark chocolate eating couch potato that watched Bones marathons all winter.

With that in mind, remember I'm trying to recruit 20 riders to participate in the October Get Your Guts in Gear ride. If I can go from couch to 210 mile ride in five months, so can you. At first it may seem odd of me to use oh, not so glamours photos when I'm trying to recruit people to ride. Let's face it, I'm sweaty, red faced and have eye makeup running down my face (which I normally remove, but forgot today). I'm intentionally using these pictures because they are honest. You are going to sweat as a rider. And you are going to ache a few days. And it is an investment of your time. However your sweat, pains and time are all symbolic of what Crohn's and colitis patients experience everyday.

If being a rider does not appeal to you, consider being a volunteer crew member. No training involved. You just show up and become a worker bee. Get Your Guts in Gear rides are manned by volunteers so the most money possible can be donated to the Crohn's and Colitis Foundation of America, the United Ostomy Associations of America, Inc., Advocacy for Patients with Chronic Illness, Inc. and the Colon Club.

As much as I want everyone I meet to become a rider or crew member, I know realistically, it's not going to happen. So if you aren't rider or crew member material, please consider making a financial donation.

Everyone knows someone that has Crohn's or colitis.

Everyone.

Who can you honor with your sweat, aches, time or money?

Canadian Invasion

Myself, Shemp & Marcia Check out those bags!


Training: Week 3, Day 4
Distance: 15 miles
Time: 1 hour 10 minutes
Weather: 72, Overcast & humid
Power Song: no music today


As I was cooling down my ride today I passed a couple on bikes who were obviously traveling somewhere. They were both carrying four bags each, plus wearing a lot of gear. I did just pass them, but then curiosity got the better of me and I turned around to talk to them.

Come to find out Shemp and Marcia are traveling by bike from Toronto, Canada to Washington State. Yikes! They'd already been on the road two weeks and plan to be on the road until August 31. They are mostly staying in hotels, but are prepared to camp once they hit the mountains. Intense! Then they found out I was riding in Get Your Guts in Gear and thought I was intense-- apparently, they'd never do more than 50 miles a day and me doing 70 a day for three days was really impressive. Hah! Biking across two countries is impressive. I'm just going for a ride.

To make a long story short Shemp and Marcia (who had a wonderful British influenced clip to her voice) were taking the Lake Express Ferry from Muskegon, MI to Milwaukee, WI. They had missed the Ferry's entrance (which isn't well marked from the bike path), so I guided them back to the Ferry. I did take a picture of us. Note that my master camera skills were once again used. This time I captured that perfect moment when my eyes were closed AND my leg looks like it has elephantaisis-- I know. I got talent.

What a cool experience to meet cross country travelers. That takes a serious commitment. I wonder what it would be like to take a trip like that.

Coast to Coast with Colitis Summer 2010. Takers? Anyone?

Zen and the Art of Riding with Hemorrhoids

Training: Week 3, Day 2
Distance: 13 miles
Time: 1 hour
Weather: 79 & Muggy
Song: Lights by the Editors




'June Snow'









The exhilaration for training leveled itself out today-- I forgot how hard it is to climb back on the bike after you've been off for a week! I'm experiencing some of Week One's general aches and pains, and I feel really slow. By Friday I should back on track, but for now I'm a smidgen sore.

Tomorrow I have to face every woman's fear-- purchasing bicycle shorts. They're short and tight and the bike shop I frequent is an all male staff--- but, oh, the padding, blessed padding of bicycle shorts! I've never owned a pair, I've always 'toughed' it out and hoped I'd develop... callouses?

But now I'm older, wiser and have a few exit speed bumps, so I'm going to treat myself. Now that the heat of last week's health problems are over, I can see how easy it would be for me to slip back into denial about my health. Five years ago I would have kept training and going to work until I passed out from the pain. Now I purposely step back and let myself heal. Not that I'm not Mrs. Suzie Sunshine about it, in fact, I'm actually very....moody about it, and my husband is a saint for still loving and caring for me.

Something I keep saying over and over again is "Colitis is just something that happened to me, it's not who I am." From the outside this is a simple statement, but to me it is a profound statement of truth that took years for me to understand.

And when I'm bogged down I have to continuously remind myself that colitis is just part of my life. I can either stop and deal with it. Or I can ignore it and deal with it later.

Experience has taught me it's better to deal with it immediately.

Back in the Saddle

Training: Week 3, Day 1

Distance: 13.44 miles

Time: 1 hour 13 minutes

Weather: Sunny & 78 (Beautiful!)

Power Song: Are We Human or Dancer by The Killers

I'm back! As much as it stinks to be down and out for several days, I always experience a sense of exhilaration when I'm back full throttle. It sounds corny, but Muskegon Lake really did smell fresher, the sun felt warmer (I didn't even mind getting a little sun burned), I had a smile for every person and noticed several 'quaint' spots that would be good for a picnic. This is the part I don't mind about colitis-- I don't take good days for granted.

Since I missed all of Week 3 training I need to repeat it. I'm not worried, there is still 14 weeks before the Ride, so I should be in adequate shape by October 2-4. And my goal isn't to race, it's to finish. Two hundred and ten miles sounds like a lot, but when you break it down over three days, it's only 70 miles a day. If you average 12 miles an hour it would take just under 6 hours to finish. Even better yet, if you did average 12 miles are hour, there is a fully stocked restroom every 12 miles along the ride (remember you're dealing with the Angry Ass Peloton).

Doesn't sound too bad does it?

In fact, I bet you could join this ride with me. Stop it, don't laugh. If dark chocolate eating, Bones marathon, couch potato Amber can do it, so can you.

And hello, I'm recovering from a partial bowel obstruction. If I can do, so can you. And who even cares if you make all 210 miles, take it 12 miles at a time. There are sweep vans that will give you a ride back if you can't make it-- but you can, so don't worry about.

See you're mostly convinced.

Wouldn't Northern Illinois and Southern Wisconsin be beautiful to ride in October?-- all the trees just changing color, cool breezes from Lake Michigan, cheese, cows, beer.... well, I can't guarantee beer. But cows and cheese, yes.

http://www.ibdride.com/ Check it out. My goal is to recruit 20 riders/volunteer crew members. You know you want to be one. At the very least you know someone who does.

Living in a Toliet Paper House While It's Raining

Easter Day 2004- Family Tip: When trying to avoiding looking 'sickly pale' don't stand next to Tanning Goddesses

Training: Week 3, Day 5
Time: 0
Distance: 0
Power Song: Hometown Glory by Adele

April 2, 2004-- I spent my Spring Break sleeping. Weary and exhausted are words that are often tossed out like change to a homeless man- thoughtlessly given until the giver has been homeless.

I was weary and exhausted

The week that I slept was Holy Week (Christian holiday that begins with Palm Sunday and extends through Easter Sunday). I was raised in a Christian home and was active in my faith through college, but I changed as I became sicker. I couldn't understand why God allowed this to happen to me. Myself, my family and three churches were praying to him for my healing... and nothing. I lost my 'faith of a child' during my illness.

On Good Friday I was scheduled for a CT scan. This scan would either clear me to return to the classroom or keep me home for another week. My normal doctor was on holiday and I had to see another doctor. My sub doctor compared my previous scan and the current on. I had a 'potentially troublesome spot'. He wanted to hospitalize me. He said he wanted a second opinion, and the only doctor on Good Friday would be the hospital's on call doctor. All I heard was hospital and started crying and said no.

When he asked what was wrong I told him I wanted to be home for Easter with my dog. He told me that if I'd let him admit me, he'd bring his dog to the hospital on Easter for me to see. It was the lamest compromise I've ever made in my whole life.

My hospital room was one I'd stayed in before-- a corner room with a view of the courtyard--where I could potentially play with the doctor's dog on Easter.

My mom left me alone to call my Dad. She was barely holding in her tears.

In a hospital there is always noise from medical equipment filling your ears. Or nurses are constantly pestering you to draw blood or check your fluid intake and output. It smells like weird disinfectants. But I didn't register any of this.

Instead, I sat on the bed looking at the courtyard. It was gray and unkempt from the long winter. I knew I had to chose. Up until now it's all been Amber's way, and here I was in the hospital, yet again. I could keep fighting. Keep trying to prove I could live my life how I wanted, no matter what. And I could keep ending up in the hospital. Keep pushing myself. Keep denying the truth.

I was tired.

Tired of fighting.

Tired of seeing my mom cry.

Tired of my Grandma lighting candles and praying with the Saints of Intestinal Disease for my recovery.

My way wasn't worth it anymore.

Okay God.

I get it.

I'm sick.

The Family That Shares a Bathroom Together...

Family Photo taken Christmas Day 2001- 1 year after my diagnosis

Training: Week 3, Day 4
Time: 0
Distance: 0
Power Song: Song to the Moon by Dvorak

March 30, 2004- My CT scan showed what could be another abscess forming. It was just big enough to make my surgeon recommend that I spend Spring Break within an hour of him.

My parents finally had me right where they wanted me. No car. No money. Doctor's advise for me to stay put. And I was too worn down to fight.

Throughout this whole ordeal I can see where people might think, "Where was her family in this whole Britney Spears self destructive mess?"

They were there the whole time. Looking back I realize how strong my parents really were to let me make all those stupid mistakes. They didn't approve of what I did or enable me. They told me I was being irrational, and that I should listen to my doctors, but they knew they couldn't 'make me' do anything. I was over 18, paying for my own college, room, board and car. What could they do?

The incredibly selfish part of all this was that my brother was also diagnosis with colitis during this time and I didn't even care. I was too wrapped up in making my life work the way I wanted. Many families are broken over events much smaller than this. Disownments and estrangements happen. Wounds are made. And sides are chosen. But this didn't happen to my family. They held strong, waiting for when I would need them most.

My parents are the strongest people I know.

How to Mess Up Your Colectomy Recovery.. Again and Again and Again

Training: Week 3, Day 3

Length: 0

Distance: 0

Power Song: Repetition Kills You by The Black Ghosts

Photo was taken in 2004 during my student teaching placement

Medical advisement believes I'm suffering from a partial bowel obstruction. A clear liquid diet and movement are the best at home cure. If I want medical treatment I'd have to be hospitalized and have a gastronasal tube shoved down my nose. I've been there before, I'd rather not go back. So I'm home for another day or two, drinking broth and walking circles around the house to help things 'work out'. I'm not well enough to train, so this week will be a wash as far a training goes. On the bright side, I'm not in the hospital and I'm able to get around... mostly.

March 2-9, 2004-----My emergency flight back Grand Rapids resulted in me being hospitalized for four days. I was loosely diagnosis with a ruptured abscess in my abdominal cavity. Nothing drip antibiotics and mandatory time off didn't 'cure'. I was released from the hospital on the condition that I stayed within one hour of my surgeon for five days. I missed seven days of student teaching, but on the eighth day I returned to the classroom.

I should make it clear, this move was not approved by my doctor or my parents. In fact, the only people who seemed to think it was a good idea was myself and my supervising teacher, who'd already reminded me that the days I'd missed would be added on to the end of my placement.

When I returned to my classroom I was sapped. I was too tired to make myself dinner, so I ate ice cream. Doing laundry was impossible. Plus, before my colectomy I'd had to resign from my job as an apartment advisor giving up my plush, fully furnished two bedroom apartment for an unfurnished, windowless basement apartment. It was depressing. Oh yeah, I also found out my boyfriend of three years was sleeping with one of our friends. All in all, that time remains a rather grim part of my life.

Well, excepts for getting rid of the smuck boyfriend, I did feel less entagled when the door slammed in his carcass.

Three weeks after returning to the classroom the pain in my side returned. This time I went right to the ER, where I was fondly remembered. Before I left for the ER I called home. I was still talking to my mom when I heard the front door slam and my Dad's truck roar to life. He was on his way. And I would be going home with him.

Dad arrived in Marquette shortly after the ER discharged me with pain meds and a clean CT scan. That night he made linguine with shrimp. It was the best meal I'd eaten since January. I was packed up and returned to Grand Rapids, where I was given the instructions to stay in the area for at least one week. It was Spring Break at school, so my teacher didn't give me too hard of a time. Not to say she didn't give me a hard time, she was after all concerned I wouldn't be back in time for spring break staff training.

Now, I'm a pretty patient person, but getting grief from someone who walked out on me after one week of 'supervision', treated me like a full staff person (minus the pay), and had me write all my own curriculum, really cheesed me. Just to give her something to fret about I told her I might not be back... period. Until my doctor released me, I was not going anywhere.

Not that I believed it of course. My sheer stubbornness would put me back on time, no matter what the doctor said.

March 10, 2004 Return to Student Teaching

March 29, 2004 Return to Grand Rapids for treatment of mystery pain

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