My {2nd} First Run Post-Op

Central Park, I have missed you.

 

I have missed you, old friend.

There really is nothing like New York in the Fall. If you have any doubts, watch You’ve Got Mail. It’s basically a love letter to NYC throughout the seasons, which I just love.

Where was I? Oh, yeah. I went running!

I’m sure that was what was on your mind when you woke up this morning. Not that silly little storm bearing down on the Eastern seaboard as I type.

Hurricane? What hurricane? All I see are whitecaps on my normally calm East River and sideways rain and trees about to get pulled out of the grou…OOOOOH! You mean THAT hurricane.

In my world, two successful post-op runs in a row is far more newsworthy than Sandy the Monster. Ok, that’s probably not true for anyone else but me but I’m gonna write about it anyway.

I ran my very first run back on my beloved Bridal Path in Central Park. I was greeted with cool temperatures, a quiet path, and the most beautiful scenery NYC has to offer.

Sheep Meadow looking very fine this Fall day!

Hello, gorgeous. Not the Bridal Path but I was too happy to stop and take a picture. You understand.

Sadly, Sandy is currently blowing away all of my beautiful leaves and trees.

Bitch.

I’m really glad I got two full runs in before this nonsense took over because several happy things happened on my run:

  1. I didn’t have to stop once, not for anything.
  2. I ran 1.75 on Saturday and 2.5 on Sunday.
  3. I feel great.
  4. My body doesn’t feel beat to hell like it did last time.
  5. No one ran into me.

Win!

I also saw one of my best friends on the side of a bus while running. Rockettes are preeeetty.

I spent the past two years figuring out how to run with this disease. When I was able to run, it was always interrupted by having to make a mad dash for the bathroom. Multiple times. Every run. No exceptions. It was not a way to live and it beat my spirit.

In a bathroom during an 11 mile workout, where else?

No more.

It started with a bag and Rosebud.

Me & Rosebud were a good team, though she often thought naked running was the way to go.

And now, it’s me and my pouch. 1.75 miles and no panic. 2.5 miles and no fear. For the first time since all this started a month ago, I am hopeful that I will be able to get my life back.

One run at a time. One mile at a time. One step at a time.

I’m off and running! How about you? Who knows–you might just spot me at a half-marathon sometime this Spring. You never know! In the mean time, you can find me at the medical tent of the New York City Marathon with my fellow NYU DPT students. I don’t want to see any of you there, ok?

Catch me at the Finish Line Medical Tent for a massage 🙂

Now go out and run!

(Unless you are on the East Coast, in which case ARE YOU CRAZY?!?! GET INSIDE!!!!)

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The Choice I Made

“There’s nothing more we can do for you.”

Those are not words you ever want to hear come out of your doctor’s mouth. Nope. Those are words that make your heart race, your stomach flip-flop, and your eyes well up with tears.

“Ok,” I said. “So what’s next?”

“Well, the only other option is surgery.” Gulp. “You are a very good candidate and I can make several suggestions of surgeons I would trust if it were me.”

“Ok. But, Boz, be straight with me. We tried everything, right?”

I knew the answer to that question before I even asked it. Yes, we did everything. I know we tried everything. Boz told me, KAP told me, and my surgeon would tell me a week and a half later that I had the 3 of the top indicators for my surgery. So, yeah, we tried everything.

My Ulcerative Colitis was not especially terrible the first year. A negligible flare-up treated with topical steroids, 4 time-release pills, and an anti-inflammatory suppository seemed like nothing to worry about. Then Jersey happened. After that, they put me in a clinical trial for a new drug. It was all downhill from there.

The first of many iron/Banana Bag IVs back in November to combat the anemia. I felt like Superwoman for exactly 2 days and then back to feeling like crap. Pun intended.

A year-long flare-up (yes, it lasted a full year) that included every drug under the sun: Proctofoam, Canasa, Apriso, Hydrocortisone enemas (that was fun), some suppository concocted and mixed by a pharmacist that was definitely NOT covered by my insurance, Prednisone, Remicade infusions (yay, chemo), and finally, Humira injections.

For the science geeks out there (holla!), I was being treated with TNF blockers, but they are really designed for Th1 inflammatory diseases (Crohns) and Ulcerative Colitis is a Th2 disease. Hooray for Histology because I actually understand the difference!!!

Easy as pie, right? Darn Th2 cells think my colon is bad.

In any event, Nothing worked. My immune system barely acknowledged the drugs and my disease continued to spread and wreak havoc on my everyday life, not to mention what it was doing to my running. As a lululemon Ambassador, personal trainer, and run coach, I was finding it nearly impossible to do my job, let alone get my own workouts in on a regular basis.

Lots and lots and lots of treadmill miles last year.

By the time I was training for Philly, I couldn’t run outside anymore. My workouts were relegated to the treadmill nearest to the bathrooms at the Palladium, and sometimes even that wasn’t close enough for me. I supplemented with indoor cycling classes, but fevers kept me from many of my workouts and home from school. I caught every flu and cold any one of my 400+ classmates had. I was exhausted all the time. I was anemic and getting sicker by the day.

As much fun as it was to run 12 miles on the treadmill, I prefer the great outdoors.

My March colonoscopy confirmed that the disease had spread to take over nearly all of my descending colon, showing no signs of slowing down. Two marathons completed during flare-ups was two too many for me. As much as I didn’t want to lose an organ, I really didn’t want to lose my life.

Dear Remicade,
You were wreaking havoc on my hair and my blogging time. Thanks for nuthin.
xoxo
Abby

So, after a year of being sick, getting iron IVs, having chemo drugs pumped into my veins every three weeks, and having my spirit beat to hell by Ulcerative Colitis, I chose the only option I had left.

I had my entire colon removed.

The day after. Colon-free. What am I smiling about? Mostly, I was just happy the epidural was working!

It was not a hard decision. It was either surgery now or later, since the disease was spreading and would eventually cause my entire colon to become necrotic, amongst other not-so-fabulous medical problems.

I trusted Boz when he said we had tried everything. I knew that if I didn’t respond to the drugs from the get-go that I would never respond to them. My body was breaking down and I never felt quite like myself. I wanted my life back. I had just been accepted to NYU’s Doctorate of Physical Therapy program and now I was scared I would be too sick to make it through the next three years.

LIAR!!!

I was fortunate enough to chat with some very candid young women about their surgeries and life after surgery. I also read other people’s stories online and they all said the same thing, “It was the best decision I ever made.” I was sold.

And so, with the unwavering support of JB, I met with a top colorectal surgeon and set a date to have my entire colon removed, a temporary ileostomy created along with a J-pouch. I have no colon. I have a stoma named Rosebud (think Citizen Kane), and a colostomy bag. I wrote about the surgery itself back in June, but have always been reluctant to “come out” about having an ileostomy. I guess the whole colostomy bag thing is why.

All dressed up and ready to go. Purple marks the spot!

I didn’t look at it for the first two days after surgery. When my ostomy nurse, who is AWESOME, came to change my bag I finally saw Rosebud. I didn’t freak out the way I thought I would, though I still couldn’t bring myself to touch it. It took me a few tries to get used to changing my bag, but now I’m a pro.

The biggest fear I had (childish as it is to admit this) was that people would define me by my ileostomy/colostomy bag. Five weeks after surgery I started my DPT program with 43 perfect strangers whom I’d be stuck with for the next three years, come hell or high water. I didn’t want the first thing they knew about me to be that I have a colostomy bag and I didn’t want to be treated any differently by my professors. I told a few classmates just so I could get help if Rosebud freaked out during one of our 8:30-4:30 school days, but Rosebud is largely still a secret.

I’d much rather be known as The Girl Who Owls rather than The Girl With the Colostomy Bag. What the heck, I can be both 🙂

No more.

I decided when I started this blog that I wanted to Be the Change I want to see in this world. So, here I am. Loud and proud to be an ostomate! I have a stoma named Rosebud who hates dried fruit and spinach and talks after lunch like she’s reciting Shakespeare. Some of my classmates must have heard it but probably didn’t know who or what was making all that noise. It was Rosebud. Sorry for the noise.

I am still me. I ran 13 miles on Saturday, took a spin class yesterday, and am going to run my 10th marathon in October at the Marine Corps Marathon in Washington, D.C., colostomy bag and all!

Post-surgery Fly-ing with my lululemon family 🙂

I am healthier and happier than I have been in more than a year now that I’m fully recovered from my surgery. JB remarked the other day how much healthier I look now. Looking back, I can see how sick I had actually become. I’ll have a second surgery in December to connect my J-pouch to my remaining small intestine so that I can do my thing like everyone else and Rosebud will retire back below my abdominal wall. If it doesn’t work and I have my colostomy bag permanently, I still won’t regret it. I’ll never regret it.

I can run 13 miles of Summer Streets and not look for a bathroom once. I can take a walk with my husband outside. I can take the subway. I can eat without fear. I can plan a date with friends. I can stand in the cadaver lab for three hours and not need to rush to the bathroom every 5 minutes. I can live my life.

Me & Rosebud’s first run. We did A-ok 🙂 Thanks for the help, Rainbow!

So what if I have a colostomy bag? So what? I thought I might care more or be more sensitive about it, but I don’t and I’m not. Got questions? Bring ’em on. Got comments? I want to hear those, too! Do you have a colostomy bag? Tell me all your secrets about how you manage to keep your wafer on during 15 mile run, I’m dying to know. Do you have Crohns or Colitis? Have you been faced with the same decision as me? Tell me about it. I want to know.

You are not alone.

I had this made a few weeks after surgery. It’s to remind me that no matter what I’m going through, I’m not going through it alone.

In hindsight, it doesn’t seem like such a big deal to me anymore. I’m happy to share my story and help other people to understand my disease and surgery. There are a lot of us out there with Crohns, Colitis, and Ostomies. We want you to understand our disease, to help us fight and to raise awareness about Inflammatory Bowel Disease. Walk with us. Run with us. Ride with us.

I kill you, CCFA shark!

I hope that by reading my story, someone out there will realize that there is life after an ostomy. A great life, actually. You can run, you can swim, you can bike, you can do anything with your ostomy! And you can do it all with IBD, too. You just need a little support and a lot of courage to take the first steps.

My first steps back. Thanks for walking with me, Mom!

Remember how treadmill running was my only option for the past year? Well, a few weeks ago I walked into the Palladium with a friend to work out. Whenever I used to walk into the gym while I was sick, I would have to run for the bathrooms. I mean RUUUUUUUUUUUN!!!!!!!!!! I expected that feeling to come over me as soon as I walked back into the building. The panic.

When it didn’t, I realized that my life had changed.

The nightmare was over.

The new and improved Abby 🙂

Thanks for reading this crazy-long blog entry (that is, if any of you made it to the end). I hope you have a great day and a great run. Me and Rosebud are heading out the door right now!

Now go out and run!