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!

Train Your Brain

A few weeks ago, I had the chance to bug the hell out of chat with my cousin’s boyfriend who happens to also be a med student at Brown headed for a very successful career in orthopedic surgery. I have high hopes for a very successful mutual business arrangement with him in the future. IF I can convince them to move to NYC, that is.

Never gonna happen, but we can have really nerdy conversation about tendons and stuff at family gatherings. That’s right. We’re the cool table.

Dear Anyone Else in Scrubs,
Beware of me. I will ask you questions all night long.
xo
Soon-to-be Dr. Abby, DPT

I had about a million questions I wanted to ask him (I restrained myself) but he had one for me, too.

“How much of running a marathon is mental and how much is physical?”

JB’s answer was 80% mental, 20% physical. I disagree slightly with those numbers. For me, 20 miles is physical. For 20 miles, my training will show. My speed workouts, my long runs, my 13-16 weeks of training will be out there for everyone to see.

Game face. Kinda struggling.

Same spot, 3 years later. Feeling much better, wouldn’t you say?

My training makes all the difference when it comes to how I’m feeling at mile 20. After that, all bets are off.

Then mile 21 comes along. And 22. And here comes my mental game. Because, no matter how hard I’ve trained or how many miles I’ve logged, at mile 20, I am bored. I am tired. I am ready to be done. And yet, I have almost another whole hour of running to go.

Miles 20-26.2 is where the difference between a 3:45 and a 4:00 time happens.

Miles 20-26.2 is where I stop smiling and start hunkering down.

Miles 20-26.2 is where I remind myself that I’ve done this 9 times before and I will do it again.

Miles 20-26.2 is where I visualize finishing.

Miles 20-26.2 are my mental game.

 

I start to envision my familiar running routes so I don’t psych myself out about how much further I have to run. I think to myself, “Self, you know what 4 miles feels like in Central Park. Pretend you’re on that run, not this one.”

I’m dreaming of a finisher medal somewhere around mile 24.

And I count down. And I finish.

My workouts make me fast. My long runs make me fit. My gym time makes me strong. But it’s all bubkis if my mental game isn’t there. So don’t get all caught up in the runs and focus on keeping your head in the game.

If finishing 9 marathons has taught me anything it’s that if I just keep going, I will eventually reach the finish line.

Now go out and run!

I’m Not Always the Boss

JB’s best friend shared a story during his best man speech at our wedding. He told of our list of “rules” that we used to have hanging on our wall when we first moved in together several years ago. I had 4 rules for JB. He had 1 for me: “Abigail  is not the boss all the time.”

True story.

I let him think he’s the boss sometimes. You know, cuz we’re married and stuff.

And so it goes for coaching. I am not the boss all the time.

My friend asked me the other day if I coached/trained myself or if I had some input from other coaches or joined other teams for my training. It’s honestly been so long since I was able to join another human being outside for a run that I hadn’t given much thought to getting back into social running.

Mostly, I’m ashamed of my slow-ass right now. Maybe my new shoes will make it look like I’m going faster?

Neon shoes = speedy Abby

Getting back to running and exercise in general hasn’t been easy. Physical restrictions from the surgery and doctor-imposed restrictions keep me from jumping out there every day and going balls to the wall. My body just can’t take it these days, so my 5 miles and 20 pounds will have to do.

I think I’ll be ready to hit the heavier stuff right around the time the doc gives me the ok to go over 20 pounds. It all works out.

As far as running goes, I am definitely not the boss all the time. I seek out advice from people who are faster than me and who have been running for longer than I have. Success means a lot to me and those coaches who repeatedly get clients to reach their goals are the guys/gals I want to run with.

I’ve successfully coached dozens of runners through races of all kinds. But sometimes a girl just needs some help!

I like a team run for tempo and speed work. I never want to set my own speed work and I really prefer to be a part of a speedy pack of runners for tempo runs. My long runs are my time, though. I run by myself, just me and the road, and try to relax into the solitude.

Here’s the thing, all the pros have coaches. There’s something about having someone else give you an impossibly hard workout that they believe you can do and that translates into you believing you can do it, too. Not that any of us has low running self-esteem, but it’s too easy to say, “I’m just going to run 5 easy miles” instead of, “My workout today is 400, 800, and 1600 repeats on the track at X pace.”

So, yes, I have help. Not a lot, but as much as I want/can tolerate being who I am (see above anecdote for reference).

I am, among other things, the girl who will find any way at all not to sit in her chair all damn day. JB says I’m “owling”.

Coaches can be a great asset to your training. Just find one whose attitude about running gels with yours and who treats you in a way that is productive for you to run your best. Me? I don’t respond to threats or yelling. Only nice coaches need apply. Do you have a coach? Do you love him/her or are you running for the hills as soon as your paid time is up?

If you’re looking for a coach, check out your local running club, running shoe stores, and lululemon for the running coaches in your community.

Now go out and run!

Untitled (and really long)

I have thought long and hard about whether or not I would actually write this post. Then I hemmed and hawed about how much detail I would get into if I did decide to write it. In short, I have spent way too much time thinking about one blog post over the past two months.

Well, I’ve decided to share the part of my own journey that I feel is pertinent to this blog. It is, in fact, called Run Stronger Every Day and I am starting from Square One on the way to running again at all. Here goes: this is my journey from surgery to marathon.

Marathon #9…when will marathon #10 happen?

One month ago, I had a planned surgical event that was medically necessary and landed me in the hospital for five days (= FOR-EV-ER). I have never had a serious surgery or any other type of major medical event in my entire life. I’ve had my wisdom teeth pulled, which produced very adorable chipmunk cheeks and my very first case of hives, and I broke my pinky toe right before I left to be a camp counselor for the summer back in college. But that’s it.

The longest I’ve been away from running is one month back in 2009 because of my stupid left gluteus medius. But I could still bike and lift and swim and, you know, WALK. This surgery was major. No, really. It’s classified as “major surgery”. Walking would be a challenge, I was told. Weird.

I like spinning, I do. But running is my 1st love.

Funny aside: I knew I was ok with my decision to go ahead with the surgery when, after my Physics final three days prior, I only felt relief as I headed into the weekend. No anxiety about the surgery. No stress about the what-ifs. Just relief that Physics was finally over. Priorities, I suppose.

Drinks. There were a lot of drinks when I found out I passed Physics.

The morning of my surgery, I tried making jokes as the nurses and doctors hooked me up and stabbed me with needles of all sizes. My Mom, angel that she is, flew in to be with me and JB during my hospitalization. I was nervous, but not as scared as I thought I’d be. Probably because when I asked about a possible complication I’d read about my surgeon responded, ” That doesn’t happen in my hands.” Exactly what I want to hear!

Off I went to the operating room (which was a lot smaller than I expected) where I met my surgical team and briefly reminded my surgeon that I am a vain woman and small, neat scars would be greatly appreciated. He assured me he’d do his best and out I went.

I “woke” up to JB and Mrs. Obi-wan by my side once again in recovery, in the most immense pain I have ever felt in my life. Thankfully, now that I was awake, they could give me the good drugs. I definitely didn’t do any recovering in the “recovery room”. I kept hearing rumors the my room was “almost ready” but, not having any concept of time due to the wonderful narcotics, I was seriously perturbed that everything seemed to be taking so long.

The view from my room. Rainy New York days were just fine by me.

Shortly after I got to my room, my nurse told I was going to walk soon. I told her she was dreaming. I was in a tremendous amount of pain. Turns out, my pain treatment had briefly gone awry and OHMYGODWHYDOESTHISHURTSOMUCH?!?!?!!!! was basically what I said to her.  She fixed the problem, God bless her, and made sure I got several boosters so I could sleep.

These bruises were the result of my least favorite daily interruption: shots. Ouch. Maybe next time we choose a different place to torture? They lasted for nearly 3 weeks!

Early Tuesday morning, she woke me and said we were going for sure taking a walk before her shift ended. Still, the idea of heaving myself out of bed and walking was akin to climbing Everest. Me, a 9-time marathoner, often 2-a-day workout girl, thought that getting out of bed and walking seemed impossible. I was attached to an IV and several drainage apparatus but with the aid of the most wonderful nurse in the entire world, I walked. It was approximately 30 yards, round-trip.

They were the hardest steps I have ever taken in my entire life.

You know how you feel exhausted after a marathon? That’s how I felt. I hadn’t had food in three days, my surgery was four hours long, I was on serious pain management drugs and was terrified I wouldn’t make it.

I did. I made it. I made it to Day 2 and was getting a handle on my new body, new gear, and new surroundings.

The morning after surgery. See, Dad? I’m ok!

Day 2 was crazy. Between flower deliveries (my favorite!), emptying my various drains, an endless stream of checking my vitals, my surgical team making the rounds, figuring out how everything worked, social workers (yes, social workers…don’t know why), and the very awesome Dr. Boz and PAK stopping by to check up on me (how awesome are they?!), it was a whirlwind of activity in my room. I dozed on and off but woke up whenever I got a flower delivery 🙂

Pretty view from my room. The flowers everyone sent brightened every moment of my stay in the hospital.

With the help of the very awesome Mrs. Obi-wan, I walked even more on Day 2. I think we went to the entryway of my wing and back twice. Mom kept chatting about this beautiful mural as you walk onto my floor that I never got to see since I was only semi-conscious when I was brought to my floor. On day 3, I finally got to see it.

The very cool “Chalk Mural” depicting the World’s Fair in Queens, NY on my floor. It wasn’t actually chalk, but we never could figure out what it was.

But in order to get that far, they had to let me EAT REAL FOOD!

French toast never tasted so good.

French toast, turkey sausage and orange juice. Food, I missed you. I was so happy that I took a picture and sent it to my family. Being allowed to eat real food is a big marker post-surgery. I blasted by the “soft foods” order that my resident prescribed in less than 24 hours and was onto “normal diet” so quickly the food delivery lady couldn’t keep up with his orders.

My recovery went about as well as you could expect. I walked more and more, further and further. And while it was never really “easy” to get out of bed, once I was up I was able to make multiple laps on my floor several times a day. I was out of the hospital by Friday afternoon and home sleeping on my couch Friday night.

My pillow fort.

In all the fuss over my surgery, I had forgotten that my birthday was just days later. By then, I was showering and getting dressed all by myself, walking the streets of New York (with a bodyguard), and eating delicious takeout.

My birthday this year was a very laid-back celebration of survival, the gift of life, modern medicine and Sprinkles Cupcakes. I have never been so happy to have a birthday come as I was this year. Not only did it mark the end of a reeeeeeally trying year for me, but it was the kickoff to a year of entirely new adventures, new body and better health.

Happy birthday!
Love,
Doggie Howser

I am still not running. I am walking lots and hoping to maybe jump on a bike sometime this week, but I’m in no rush. I am respecting the healing process and allowing my body time to recover. When I do get back to running, it will be entirely different than it was before–and that’s ok. Things will feel different. I might move differently. God knows I’ll be slow as molasses. But I’ll be back and I will learn what it is to Run Stronger Every Day as the new me.

So, here I go. Starting from Square One, I am working toward running the Marine Corps Marathon this fall in Washington, D.C. for Team Fisher House. That’s right, a marathon. Will I make it? Don’t care. I will at least show up and run a few miles at my favorite race. If I have to drop out at some point, I don’t care. I will be there. I will run (a little or a lot). I will celebrate my life and do what I love: run.

I will run…and then we will celebrate!

So far, my journey back has taught me two things.

  1. The body is the most perfect instrument every created.
  2. I can do anything if I set my mind to it.

It’s not always easy. I get frustrated sometimes and the fatigue is more annoying than anything else. The days are not always sunshine and butterflies, though there have been an awful lot of double rainbows in the city lately.

RAINBOWS!! (picture shamelessly stolen from Erica Sara, who makes really beautiful jewelry)

The thing is, it had to be done so there’s no use being all upset about it. I’m going to be healthier for it. I’m already able to do more than I could before. And one day soon, I will Run Stronger because of this surgery. And for that reason, it will always have been worth it.

Now go out and run!

I’m Having A Party

Hi friends. It’s been a while. I can’t even begin to tell you what’s been keeping me from blogging but the simple answer is: LIFE.

Life /līf/, (noun): Physics class, work, UC “stuff”, marriage (it’s lovely, thank you for asking), pending PhD program, health, family, friends.

Oy. Just…oy.

There are days like this:

Ummm...oops.

When I thank God for this:

Bless you, lululemon. We all need this reminder from time to time.

Anyway, there’s so much going on these days I sometimes forget to shower. And when I do, I also forget to take my shower cap off before I answer the front door.

Good thing my Dry Bar shower cap is cute!

I mean, this sign we saw in Jersey pretty much sums up how my life has been in these past two weeks…and how it will be over the next month or so (or 3 years).

I just...I don't know what this sign is trying to tell me. Only in Jersey.

There is so much craziness happening, I almost forgot to tell you all about my charity Flywheel ride this weekend! You all know how obsessed with Flywheel I am, especially when I can’t run. Stupid UC. I mean, just check out My Workouts and add up my Flywheel visits. Bananas. I love it.

Anyway, you also know about my devotion to the Fisher House Foundation. If you aren’t familiar with them, they are a non-profit organization that builds houses near military hospitals for the families of injured veterans to stay FOR FREE while their soldier is hospitalized and recovering. They are rated a 4-star charity (the highest rating) by Charity Navigator because 98% of the money raised goes to program expenses, not advertising or administration costs. Very cool.

My connection to them started when JB was on his second deployment with the Marines, I was here in NYC looking for a way to support him. I decided to run the Marine Corps Marathon and do it for a military charity. I found Fisher House and was a part of their inaugural Team Fisher House marathon team. I figured if I ever needed them, I had earned my keep. Since them, I’ve run 6 marathons for them and raised over $25,000.

Yay, Fisher House!

This fall, JB and I are running the Marine Corps Marathon for the first time together for Team Fisher House. The very fabulous Aleah Stander, my fellow lululemon Ambassador and friend, and former Marine Steven Little, both Master Flywheel Instructors, have donated their time and talents to this Saturday’s Fly for Fisher House ride at the Upper East Side Flywheel Sports at 3pm. There is a seriously amazing raffle taking place, including the following confirmed items:

Oh, and there will be complimentary fro yo from Soft Serve Fruit & Co. following the ride.

What more do you need?

If you want to take part in the ride, please don’t hesitate! We are hoping for a full house and want anyone and everyone to be there. Visit our event on Facebook (if you’re not on Facebook, email me: runstrongereveryday@gmail.com for instructions on how to sign up).

Hope to see you on a bike this weekend. Come on out and support our troops and meet me! Not like that’s much of a draw, but I’d sure like to meet all of you 🙂 That is, if you’re not ashamed to be seen with me at my sweatiest!

Now go out and run.