A Kamikaze IBD Pilot Navigates Team Challenge Napa-to-Sonoma

Just returned from the Team Challenge Napa to Sonoma race and after being surrounded by more than 1,000 IBD advocates and 635 Team Challenge participants for race weekend, I felt inspired to give the blog a little lovin'. I met my first mother to give birth post-j-pouch surgery and was excited by her optimism and go-getter spirit. I spent time with old TC friends and met many fresh faces. I heard incredibly sad stories, but they were always told with an undying optimism. Every Team Challenge advocate I meet tells their story with a stoic acknowledgment of their personal tragedies, but their struggles are always overshadowed by an almost unbelievable positivity. And their altruism and strength is absolutely toxic.

But there was one problem. I was on the sidelines, once again. I've been receiving a lot of emails and phone calls lately from IBD patients that are feeling very real anxiety and depression due to their disease. My responses have been encouraging and positive: "you'll see remission, I promise!" or "your chipmunk face WILL disappear" and "just try to show your disease that you're boss." But, this past weekend I realized that unyielding positivity can sometimes have detrimental effects. Our Team Challenge teammate, Amber, was in ICU while we were in Napa. Amber has spent more than 600 days hospitalized since 2013 and more than 45 days in ICU. Though I felt extremely fortunate that I was healthy enough to be on the sidelines, I also felt angry. I felt angry that Amber has suffered so much. I felt angry that I couldn't run. I felt angry that for four years now, there have been constant and incurable interruptions to my life. Angry that I am not physically capable of being a sole caregiver to my child. Angry that I have only been able to complete two classes in an entire year since enrolling in school. Angry that I have spent more than 100 days hospitalized since 2011. Angry that my best days probably feel like most 30 year-olds worst days. Angry, that when I think of my fairly immediate future, all I can see sometimes are those mother-fucking OR doors opening, inviting me in. I just felt REALLY. fucking. angry. And, most poignantly, I felt like I deserved to be angry. I needed to be angry, if just for a few days.

Katie's Crew tackles Napa to Sonoma

Still, there is something to be said for undying positivity. Maybe even something to be said of the almost deluded sense of indestructibility that I see in so many IBD patients. I mean, fuck, I'm one of them. I've re-enrolled in school for the Fall semester because my sick mind can't accept the fact that I am most likely too ill to ever work a full-time job again, never mind working the hours of a DOCTOR. But, the thing is, I am utterly incapable of accepting defeat, even if that means flushing thousands upon thousands of dollars down the drain in tuition before my body proves me wrong for the 40,000th time. My body may be genetically engineered to self-destruct by the age of 40, but my mind has a genetic predisposition to fight like a kamikaze pilot: it is almost certainly going to keep firing bombs until my body takes its last breath.

I also need to take this rare blogging opportunity to thank the HUNDREDS of you that keep giving my brain this intoxicating power of hope. Katie's Crew helped the Crohn's and Colitis Foundation of America come $21,000 closer to a cure this season, which brings us well over the $100,000 mark since Katie's Crew was conceived in 2009. Every single one of you is the fuel that keeps me going. You are the light that Amber feels in ICU, the pick-me-up when we IBDers struggle to see an end to our vicious cycles of suffering. And if I do end up in med school sometime this decade, I will also be blaming each and every one of you for getting me there (especially Mary Boccard, Cheryl Boccard, Regina Orelli, Jo-Anne Lange, Donna Orelli, Matt Minlionica, Chrissy Whiteman, Billy Pearce and Gabrielle Orelli for personally sacrificing major amounts of time, energy, sanity and money to get Katie's Crew where it is today). I feel so incredibly fortunate that the positive forces and people in my life far outweigh the negative. Katie's Crew is so much stronger than IBD.

I think it's time, once again, to send that anger sailing for now. There's just too much work to be done.

Winning the Wrong Lottery

Hello World,

So March has brought with it two unexpected things, but I'll start with the positive. Katie's Crew is growing larger every day and I have FIVE family members running in my honor for Team Challenge at the Napa Valley Half Marathon in July!! Cheryl Boccard, Mary Boccard, Jo-Ann Orelli-Lange, Donna Orelli-Bellantone and Regina Orelli: you guys are my heroes. Together, they will get us 66 miles and more than $18,000 closer to a cure for Inflammatory Bowel Disease. Every donation, and especially every member that joins Katie's Crew, not only gives me the hope I so need that I will someday be able to live a "normal" life, but gives this same hope to the 1.4 million other Americans and their families who are also suffering. And that is a very cool thing.

I have also been asked to serve as the Team Challenge Honored Hero for the Napa Valley and Portland, ME Half Marathons this season and I am extremely honored to serve this position again. I have very much enjoyed kicking off this season with a few speaking engagements, getting my story out there and hoping that it will inspire others to make a difference in the lives of those suffering from IBD.

The other thing that March has brought with it is a recurrence of my nasty peritoneal inclusion cyst. I'm not quite sure what to say on this front. Maybe I'd like to say that I have never won a scratch-off, raffle or prize in my life, but I seem to be winning the wrong kind of lottery all the time. The cyst's extremely quick recurrence has been life-altering, to say the least. Knowing that I have to live with this new chronic issue has introduced major question marks into many aspects of my life, from confronting the very real possibility that my health will be too much of a hurdle in regard to my current path to a degree in medicine to questioning the viability of my independence as a mother. While I am incredibly lucky to be surrounded by the strongest support system known to man, I would like more than anything else to be able to independently care for my daughter and myself. Staying positive has never been a very difficult task for me, but this time around it feels daunting. Eh, C'est la vie.

I suppose only time will tell what I will or will not be able to do in this very precious life, and there is one thing I can tell you for sure. This is the best medicine on the planet (and without this, I have no idea where I would find those deep breaths and big smiles that I so desperately need):

#GetYourBellyOut

I've been feeling about as pretty close to dead, emotionally, as one can get this past week, until I woke up this morning, tapped my beloved FB open and saw a picture of a new IBD friend's belly, with the hashtag #getyourbellyout. Don't ask me how this campaign has escaped me, but when I touched the hashtag I found a facebook group, 7,000+ strong, painted with pictures of IBD sufferers' bellies: ileostomies, colostomies, scars, staples, stitches, stomas and all. I caught a quick breath, and for a moment felt a thump of life. I'm not alone. There are others. There other survivors in these treacherous waters.

IBD is a disease that is so complex, so misunderstood. So difficult. Isolating. Challenging.... Lonely. I have more or less hidden my belly from the public, not because I am ashamed, but because so many find it shocking, offensive- disgusting, even. For those of us with IBD, this is the body we live in day in and day out, we have no choice but to accept and embrace. As a fellow IBDer told me recently, "I hated my ostomy so much until one day I woke up and realized it had saved my life. I realized that something that saved my life could not be anything but beautiful." It's a romantic concept, I'll admit. Perhaps seeing the shock of an ostomy, or stoma, does not follow our normalized conceptions of aesthetic beauty, but this idea of it, the semiotics that stand behind the symbol of the stoma, or the scars: I may not see them as beautiful, but I do see them as bad-ass. They are my battle wounds. My stars. My stripes. They symbolize, more than anything else on my body, my survivor-ship, my fight, and my story.

So, as you may have guessed, I am here today to "get my belly out." I won't apologize if it offends you. I won't offer any discretionary cautions. Because this is me. It's who I am. It's what I'm made of. And it isn't something that deserves an apology. #getyourbellyout

Katie after laparotomy #4 (abdominal surgery #6)

MY TERRORIST

"You've always been so brave." These were the words my surgeon left me with this morning as I exited his office and walked towards purgatory (a.k.a. that little white room where the soft-speaking secretaries work out the details of your fate). "So when would you like to book your surgery?" where the next words that reached my ears, though my mind was far off, tuning into the faint noises of the sterile waiting room where I could detect the sound of my two year-old daughter crying. She was telling my mother that this place was "so scary." I smirked. Despite her experience being limited to the waiting room, where the fish in the tank swam seamlessly in tune with the spa music that permeated the space, the discordancy of that room's purpose and its semiotics was not lost upon her. I re-focused on the secretary's question, "Never," I answered, "I would like to book this surgery...never."

January 29th. That's the date. That Thursday morning will bring yet another time that I will have to put my "brave" face on and walk into that O.R. and lay down on that crucifix-form table. It is on January 29th that I will allow the anesthesiologist to drip the poison into my veins, and as they ask me to begin counting down from 10, all I will see is that face. That adorable little face. And I will be terrified.

You see, Dr. Procaccino, that steely look you see in my eyes is no longer bravery. It is now terror. It is not stoicism, just fear. It is the look of someone who has so much to lose. It is the face of someone who faces invisible enemies. You are now looking into the eyes of a mother. 


When I fall asleep on January 29th I will know that I will wake up with a 2.5 liter cyst removed from my abdomen. I know that I will have adhesions lysed from my small bowel. I know I will wake up with many tubes, and I know that I will almost immediately begin the obsessive week-long (or longer) wait until food or drink can pass my lips. What I don't know is if I will still have ovaries. Those tiny things that carry within them the very keys to life. "We will do all we can to save them," I have been told. Though I am anxious at the thought of losing them, they have already worked the greatest miracle of my life. And for that I am forever grateful.

I almost didn't write today, because I have almost lost hope. The space between these major recoveries is becoming more and more slim, and the prospect of recurrence of a peritoneal inclusion cyst is vast. I am losing hope of being healthy enough to realize my dreams of becoming a doctor. I am losing hope of my ability to be a stable force in my daughter's life. But, mostly, I am terrorized by the idea of hearing that little voice crying in a waiting room where the wait seems to be eternal, and her fears are never assuaged.

Team Challenge Rides at SWERVE Fitness for CCFA

For those of you in the NYC area- Team Challenge is coming to SWERVE Fitness on June 8th! 

Come ride at NYC's hottest new spin studio, SWERVE, at 1pm on Sunday, June 8th! 100% of the proceeds from the class will be donated to the Crohn's and Colitis Foundation through Katie Pearce's Fundraising Campaign. What YOU need to know:

*$35/person (100% tax deductible donation to CCFA)

*Sign up by making a $35 donation here. If you would like to donate more than $35, please email Katie to let her know that part of your donation is to reserve a spin bike.

*50/50 raffle to be drawn with super special prizes awarded to the winning team! SOUTHDOWN COFFEE will also be selling their COLD BREW coffee post-class with 100% of sales going to CCFA!

Gather your friends and sign up to compete on the RED, BLUE or GREEN team and get your SWERVE stats after class (and during!). Visit SWERVE's website to learn more about their innovative approach to spinning!

ALL welcome. Hope to spin with you on June 8th! Together, we can ride to a cure.