In Pieces

THIS POST CONTAINS GRAPHIC IMAGES OF MEDICAL SITUATIONS.

VIEWER DISCRETION IS ADVISED.

ME!

ME!

This is a special Saturday post in honor of today being the start of Crohn’s & Colitis Awareness Week. Congress made December 1-7 of every year a week to bring awareness to Inflammatory Bowel Diseases (sexy, right?) and the people who live with these diseases.

If you’d like to participate in this week’s events, please reach out to your local Congressperson to invite them to become part of the Crohn’s and Colitis Caucus. Tell them my story. I won’t mind. 

This is my (abbreviated) story from the past two and a half years. 

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It’s weird to think about things in terms of “a year ago, I was…”

So much has happened in the past six months, I still can’t even get my mind around it all. The enormity of it overwhelms me sometimes so I just put my head down and plod forward.

Like a mule.

I got baggage.

I feel like I’ve lost little pieces of myself along the way, literally and figuratively. Maybe they were pieces I didn’t need because I don’t feel as bogged down as I did a year ago, but it hasn’t been an easy road.

Ulcerative colitis took my health and my running for almost two years.

Poison in my body for a year.

One year spent almost entirely on a treadmill because I was so sick.

Married to the treadmill.

And then came the big one. My colectomy. My colostomy bag. The end of being a whole person (in body, not in spirit). No turning back.

Little, innocuous purple spot.

Post-op surgery #1. That purple spot seems A WHOLE LOT bigger now.

4 drains coming out of my body. A stoma I couldn’t look at for days. Barely able to walk. My life changed forever.

Mom took me for a walk every day until I could walk far enough to see the beautiful mural on my floor.

I felt like a freak. I didn’t want anyone to see me, see my stoma. But then my loved ones asked and I suddenly didn’t seem to mind. They marveled at my new “gear” and how fast I was recovering and I started to find my strength again, without my colon and with my new bag.

Ladies and gentlemen, this was Rosebud. She gave me my life back.

I ran outside again. I started my doctorate program. I got back to the business of living. The love of my life gave me the confidence and support I so desperately needed to push forward.

10 mile race? Piece of cake!

And I finally showed the world what colon-free and kicking ass looks like!

Catch me (& Rosebud) if you can.

I felt brave and strong. Until I was in the ER. Until they didn’t know why. Until I was faced with surgery #2 before I was ready.

The ER is not the place to be with a stoma, I promise you.

And then I was back on 14 North. And my Mom was here again, holding my hand, brushing my hair, protecting me. It was like a nightmare.

And she walked me again. And she and my Dad and JB talked me down from the ledge day after day. No matter what anyone said or did, I felt broken.

In pieces.

Back to the drugs.

Here I am. Two months post-op from my second surgery. Five weeks from my last procedure. Feeling like myself again.

No bag. Just scars. Getting healthier every day.

No bag. Just scars. Getting healthier every day.

I feel like I’ve been to Hell and back. Back for all the world to see. To tell other patients that there’s life after surgery. That this disease DOESN’T have to hold you back. That only YOU hold you back.

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I would have never gotten through it alone. I tell everyone about my disease, my surgery, my journey because I refuse to hide.

I will NOTbe silenced. I will NOT be ashamed of my disease. I will NOT be the reason someone else suffers.

I have colitis. I had a colostomy bag. I have a J-pouch now. And I have am a BADASS.

Thank you, Run Stronger community, for your unwavering support. Thank you for sharing your stories with me. Thank you for sharing mine with others. Keep up the good work.

Now go out and run!

I’m Out

I had my very first, “Where’s the blog?!” inquiry and decided to wait til everything was settled before I share the reason for my absence: I’ve been busy freaking out.

When I decided to have surgery back in May, I was all, “Let’s do it! Then I can train for the Marine Corps Marathon and be colon-free and kicking butt! Yeah!”

First run colon-free (aka disease-free)!!!

Yeah…

…no.

When I wrote about DNF-ing, I had just completed an awesome 18 mile run. I was feeling GREAT! I had had an absolutely awesome training season and was ready to kick butt. I had no idea I’d basically be talking to myself in two weeks.

Two ER visits in five days and one seriously depressing conversation with my surgeon and ostomy nurse this week have sadly ended my journey to this year’s Marine Corps Marathon. I didn’t realize how much this meant to me until it was taken away.

This is my happy face. I am not making my happy face right now.

All the training. All the hard work to get back on the road and in the gym and into my spinning classes. All the horrifically humid, disgustingly hot summer long runs and short runs for the one goal of running 26.2 in one month: gone. It was SO HARD. REALLY. HARD.

Stupid scar tissue. You see, I had, ummm, major surgery and sometimes there are little complications that cause BIG problems. Like scar tissue. It’s normal and expected but, in my case, is kinking my small intestine and not really allowing food to pass easily. Hello, ER.

ER visit numero uno.

The second ER visit was so painful and awful that I couldn’t even pretend to be ok enough to take a picture. I think the rest of the patients thought I was giving birth. I yelled at the entire team of doctors, learned that Morphine is useless but Dilaudid is my friend, and taught the attending how to treat me.

What this all adds up to is surgery much earlier than expected.

Terrific. Can’t wait to rock the hospital gown look again.

I was planning on doing my J-pouch take-down in December between school semesters. Totally ideal for this busy gal. Well, the best laid plans pave the road to hell and I am on my way into the operating room much earlier to clear out the scar tissue AND do the take-down.

Two birds. One stone. Thanks, doc.

I’m bummed. No, pissed. I’m pissed.

Don’t let the thumbs-up-fake-smile fool you. I am pissed.

The timing sucks. I have to miss school. I have to miss the marathon. I have to miss one of my oldest friend’s wedding. I’m basically going to miss the best time of year for running and being in New York because I will be stuck at home recovering and then trying to catch up with school.

This sucks.

Yes, I know it’s temporary. Yes, I know it’s sooner rather than later “and isn’t that better?” Yes, I know that it means I won’t have to do surgery at Christmas. Yes, I know I’m lucky to have great doctors and lots of support. Yes, I know there’ll be other weddings and marathons and other beautiful Fall days.

*sniff* I love Fall in New York.

Seriously. I know all of that.

And it still sucks.

And I’m still scared.

But ready or not, here we go. Less than two weeks to get everything squared away. Wish me luck and hopefully, by the time I get rolled into that OR, I will have a much better attitude, for your sake and mine.

Now go out and run (I sure am while I still can!).

Invisible Illness Awareness Week

This week is Invisible Illness Awareness Week, September 10-16, 2012. I have an invisible illness, as do millions of Americans. Rosebud would sometimes like to be more visible, I think (she occasionally gets naked when I run), but by and large, you can’t tell she’s there. It’s a struggle for many of us who need special accommodations and maybe just a little smile from day to day.

Hey, hey Rosebud!

“Be Kind for Everyone You Meet is Fighting a Great Battle.”–Plato

1. The illness I live with is: Ulcerative Colitis/Ileostomy

2. I was diagnosed with it in the year: 2010

3. But I had symptoms since: 2001

4. The biggest adjustment I’ve had to make is: With UC, it was spending almost 5 hours in the bathroom every day, not being able to take the subway, not being able to run outside, not being able to eat foods I like or that are healthy. With my ileostomy, everything has gone back to normal…except for how food exits my body 🙂 Oh, and I have to hydrate more and eat more salt (twist my arm).

5. Most people assume: That digestive diseases are the fault of the person and can be cured with some special diet. Digestive diseases are either hereditary or the result of a transcription error in your DNA reproduction (RNA). Simple as that.

6. The hardest part about mornings are: With UC, it was that I had no idea what my stomach would do that day. Was 1 hour in the bathroom enough? 2? How much blood would I lose? It was terrible. Now, sometimes Rosebud needs to be re-dressed and it’s 4:45am and I have a 5:15am client. Not a lot of time but it’s pretty rare when that happens! All in all, a complete 180.

7. My favorite medical TV show is: Do old Grey’s Anatomy re-runs count? I don’t watch any of the “doctor” shows unless Dr. G, Medical Examiner counts…and I no longer have cable so I don’t even watch that anymore.

8. A gadget I couldn’t live without is: My Hollihesives by Hollister. Holla! With UC it was my smartphone. The bathroom is a lonely place for 5 hours a day.

9. The hardest part about nights are: Blowouts from gas. Yeah, ostomies are so sexy 🙂 With UC it was the unpredictability of the emergency bathroom visits. Oh, and all the times I didn’t make it.

10. Each day I take: Vitamin D & B12. There used to be 3-4 other incredibly hard drugs on this list, but Rosebud made those all go away. They didn’t work anyway.

11. Regarding alternative treatments I: Tried. Acupuncture, juice diets, meditation, yoga. They failed.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. No one stares at me or asks me point-blank about Rosebud who doesn’t already know me and know my story.

13. Regarding working and career: I am lucky that I had another choice beyond the drugs. UC was affecting every aspect of my career, including my ability to attend class to get my degree. Without the surgery, I’m not sure I would have been able to do my job long-term.

14. People would be surprised to know: That I am the happiest I have been in a long time with my colostomy bag and I would choose it every single day of the week and twice on Sundays rather than going back to doing my business “normally” and still have UC. You can keep my colon, I’ll take my health.

15. The hardest thing to accept about my new reality has been: Adjusting my wardrobe for my bag. Not fun.

16. Something I never thought I could do with my illness that I did was: Run two marathons during massive flare-ups and I’m planning on my 1st colon-free marathon in 6 weeks (5 months post-op). The human body is amazing.

17. The commercials about my illness: Never seen one. No one likes to talk about poop.

18. Something I really miss doing since I was diagnosed is: When I had UC, it was running outside. Now, it’s wearing a bikini on the beach.

19. It was really hard to have to give up: UC: salads. Ostomy: bikinis.

20. A new hobby I have taken up since my diagnosis is: UC: surfing the Internet in the bathroom. Ostomy: life is back to normal, nothing new to report.

21. If I could have one day of feeling normal again I would: Get in a bikini and run on the beach without a shirt.

22. My illness has taught me: That I am strong and life goes on. That my husband loves all of me always. That my family and friends (the real ones, anyway) rock.

23. Want to know a secret? One thing people say that gets under my skin is: Right after my surgery, someone remarked that the post-op 20lb. weight loss “looks great on you”. Oh gee, thanks. Never tell someone who is sick and has lost a bunch of weight due to their illness that they look “so great”. They feel like sh*t.

24. But I love it when people: Ask about Rosebud. It means they care enough to want to know about my disease.

25. My favorite motto, scripture, quote that gets me through tough times is: If you just keep going, eventually you will get to the finish line.

26. When someone is diagnosed I’d like to tell them: You can do anything you want with this disease, you just have to get creative and be brave.

27. Something that has surprised me about living with an illness is: How my husband has responded. His unwavering love and support has pulled me back off of many a ledge and kept things in perspective. I didn’t realize how much I needed that from him. His strength is the reason I have been able to go through all of this with a smile.

28. The nicest thing someone did for me when I wasn’t feeling well was: Leave the hospital room/my apartment and let me sleep. No, really. And I received more flower arrangements in the hospital and at home than I ever thought I would in a million years. I was so moved by the outpouring of support.

29. I’m involved with Invisible Illness Week because: My disease isn’t sexy, but that doesn’t mean you should know about and talk about it. I want the IBD community to be strong and supportive of each other.

30. The fact that you read this list makes me feel: Humbled. And a little weird. You read about poop?

Now go out and run!

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!

Friday Fitness Links: No Run-Off

I will never understand why Jeneba Tarmoh pulled out of the run-off against Allyson Felix for a spot on the Olympics team. Never. I mean, it’s her decision and all that but MAN! What a decision to make. What would you have done?

This week has been kind of a study blur for me. As it turns out, next week will be, too. And the week after that until the end of August. Oh well. So, here’s what I missed this week. You guys are probably totally caught up. Bear with me. There’s some cool stuff happening around town.

(Image courtesy of Runner’s World & your inner child)

AND LAST BUT CERTAINLY NOT LEAST: Ali’s awesome boyfriend Brian (who owns his own ad agency) put together this AWESOME display in NYC’s Rockefeller Center for the Crohn’s and Colitis Foundation of America to bring awareness to our crappy disease.

The shark is Crohn’s & Colitis, raising hell in my GI tract. Way to go, Brian!!!! (Picture shamelessly stolen from Ali’s blog because it is so awesome. Hope she doesn’t mind…)

There is also a really cool contest where you could win tickets to Newsies and dinner by taking a picture with the shark and posting it to Twitter with the hashtag #CCFAShark. If you win and can’t go, I will happily take your place 🙂 This raises so much awareness for my disease, one that affects 1 in every 200 Americans, and I am thrilled that this display will be in Rockefeller Center for the month of July. If you stop by, tweet me (@Abby_NYC) so I can give you a shout-out!

Have a great weekend everyone! Good luck to Maggie (who is racing her first tri) and all the athletes at the NYC Tri this weekend. Who else is running? Has marathon training kicked off for you? How’s it going? The heat. Oh, the heat!

Now go out and run!