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!

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!

My Team

Who’s on your Team? I really couldn’t do all I do without the amazing people and doctors who are on Team Abby. I’ve never been one to shy away from taking care of my body both inside and out. These experts fix me, offer me advice, and help me from having to see them too often.

Many runners are of this mentality:

Courtesy of badideashirts.com

I am not.

I mean, muscle soreness and the kind of agony I find myself enduring because I’m pushing hard is not PAIN. It’s effort. There’s a difference. Pain is what brought me to my PT early on in my muscular strain. Result? I was only off my legs for 4 weeks and finished my marathon that Fall pain-free. Abnormal stuff brought me to a gastroenterologist who diagnosed me with Ulcerative Colitis before things got really bad. Result: I’m managing my disease instead of it controlling me.

Suck it, Ulcerative Colitis!

The list goes on and on. Many of you have asked me for recommendations in the NYC area and those who’ve seen my docs are always pleased with the results. Here is an actual list of my Team, some of whom I’m linking to their businesses because I have their permission. You know I’m all about the good gossip.

These are the people who keep me healthy. They are my Team. You need a Team. You need a GP or an internist to give you a baseline for your body’s current condition and specialists you can see when things go awry. And they will. Trust me, they will. Find people you trust. See them at the first sign of things going wrong. Pain that doesn’t go away or sudden pain. Changes in your body that you know are abnormal for you.

Keep on top of your health. Start taking care of your body now. It’s the only one you get.

Now go out and run!

Putting Out 100%

A common question I get from runners is, “How can I get faster?” My answer is always the same, “Run harder in practice and you’ll run faster on race day.”

Most newbie runners are given the same advice when they take up running, which is to run slow because the miles are what count, not how fast you do them. They get stuck in this pattern of running a slow-to-moderate pace for every single run and then they wonder why they feel so fatigued in the middle of their race and don’t meet their goal time.

Run Clubbers put out 100% together and get faster together.

HOW FAST you run your runs is just as important as HOW FAR your runs are.

You gotta put out 100% every time.

Me, putting out 100%

When you train slow, you will run slow in your race. If you want to get faster you have got to start by being honest with yourself. You’re not putting 100% into every single workout, are you?

Confession: I’m not. There. I said it. It’s out there. I put out about 80% of the time. I know where I need to put more effort and I’m working on it. In fact, my doctor and I are both working on it. You see, we’re putting our heads together to do everything possible for my body so that I will some day soon go into remission. Drugs, diet, resting, but most importantly, staying on top of all of it.

I am scared of my disease taking over every single workout, so I don’t always put 100% into every single minute because it makes it all the more frustrating when I have to stop dead in my tracks and take care of business. Problem is, this is a lousy way to set a PR and I’m getting nowhere with it. So I’m adapting.

Treadmill = Adaptation. Treadmill haters, you can suck it.

Today I put out 100%. I could have stopped, slowed down, done an easy run instead of a tempo run. But I didn’t. And I feel awesome because I didn’t.

I put out 100%.

Did you? Or did you do the same old thing at the same old pace for the same old repetitions at the same old weight?

Testing your limits and exploring your edges is the only way to get better at your sport. You have to push harder, run faster, run longer in order to see a change in your body and in your time. That is the only way. Speed work, hard hills, challenging weights, one more mile, a longer yoga class. Start now! Push. Put out 100%. I bet you surprise yourself with what you can do. Go ahead, give it a shot and watch the changes roll your way.

Now go out and run.

When was the last time you really put out 100% in a workout? How often does that happen? Do you put out in your runs but not in the gym? Tell me about it.

Better Than the Alternative Tuesdays: The Caretakers

*This post could also be called: I Love My Husband. Be forewarned: it’s a little sappy. Deal.*

Good morning, everyone! May I just say that it is absolutely gorgeous in New York City today? 42 degrees when I popped out for my pre-dawn (gee, thanks for not letting me sleep, steroids) run this morning with the other early birds in Central Park. Despite my stomach refusing to cooperate, I had a seriously awesome and speedy 7 mile run.

Good morning, New York!

Perfect way to start this Tuesday–Better Than the Alternative Tuesday, no less! Great run and a fun new headband that *gasp* didn’t slip once on my sweaty run! Hooray for Sparkly Soul Headbands!

Ooooo, it's early and I still have those Moon Face cheeks. Don't judge, just check out the flashy new headband.

I’m a good Caretaker. I learned from the best (hi, Mrs. Obi-wan!) and my husband marvels at my ability to swoop in and take care of most any emergency/sickness that arises. I will travel where I am needed and bring presents and food and good company. Ask anyone. I’m an awesome hospital companion. I will bring cookies and cross-stitch while you get your treatments. Caretaker is a role in which I am comfortable, far more comfortable than being the patient.

2011 was the first year when I was the patient, the sick one. Being diagnosed with ulcerative colitis didn’t really seem like a big deal in 2010 and they got my symptoms under control quickly with relatively innocuous medications. No biggie, right?

Wow.

Wrong.

Like I said, 2011 was the year of me being the patient. Weekly doctor’s visits, “procedures” where I needed JB to be there to make sure I got home safe and didn’t end up sleeping on a curb all day, drugs I never imagined I’d be taking (you don’t want to know), fighting with my body just to get through the day, humiliation (or humbling experiences, you might also call it) beyond belief…I have a whole different perspective on being the patient. And now I’m the one needing a Caretaker.

Iron/Potassium IVs every week? Well, ok. If you say so, Dr. Boz.

I have a whole new perspective on the hell that The Caretakers go through watching their loved one endure these treatments. And mine aren’t even all that bad. I see it in my gorgeous husband’s face when I’m in pain and completely worn down from this f-ing disease and he doesn’t know what to do for me. I mean, I’ve been on the other side of it as the Caretaker and I have to say, there is no pain worse for me than seeing that helpless look in my husband’s eyes. It’s worse than any symptom I have and I can’t even imagine how hard it must be for him.

We are like two peas in a pod, JB and me.

Some of the main side effects of my symptoms is serious fatigue, irritability (like, perma-PMS), lack of physical strength and, well, frequent trips to the restroom. Romantic, right? How does he do it? He listens to me talk in detail about every little symptom/movement/horrific experience, waits patiently for the *one* bathroom in our apartment, asks about my appointments, holds me tight when I’m pissed off (see: irritability), indulges my cupcake cravings, and otherwise talks me down from the ledge on which I find myself these days.

I know what you’re thinking. That’s his job, right? I mean, he married me “in sickness and in health” and all that. But, do you ever get married at age 31 and imagine that your 29 year-old wife is about to be diagnosed with a chronic auto-immune disease that will turn her and your world upside down six months into marriage? No. You sure don’t. But he takes it in stride.

We take our vows seriously. Seriously.

And so today I would like to shout out to ALL the Caretakers in the world, but especially mine. JB, you deserve for everyone to know how amazing you are at taking care of me and loving me the way you do every single day. Thank you for being strong when I am not. You make every day Better Than the Alternative. I love you.

Hey, Run Stronger Nation, my husband is awesome.

Who takes care of you? Who deserves a shout-out for being YOUR caretaker? Share it here!

Now go out and run!