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.

Linking you to "I Hope You Never Have a Reason"

Readers! News again over at Dear Evangeline.

March 31: Oh Happy Day!

Ok, today is a very special day. Which is why I am going to redirect your attention to my "other" blog. Click here to find out why you should be stamping that envelope and sending my birthday card off in the mail today.

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):

So Honored to Honor My Hero!!!

Friends!

I am sincerely honored to announce that my husband and I have been selected to be on the committee for CCFA Long Island Chapter's largest fundraising event of the year: Laugh 'Til It Stops Hurting. This year, we will be honoring my surgeon, Dr. John Procaccino, and I am hoping my readers, friends, supporters and family can help us make this event another great success.

Some of you I will be bothering with formal invitations, but as I feel like I am always bugging my steadfast supporters, I decided to reach out to most of you in a more passive way (read: this blog). There are so many ways you can support this event, from a $5 donation, to purchasing a ticket, to asking your employer to consider becoming a sponsor. Regardless, please read the letter attachment that will be sent along with invitations and know that every last one of you is very welcome (and strongly encouraged) to attend the event. Hope to see some of you there, and for those of you that can't attend I hope you will consider supporting the event in some way, big or small. An enormous thank you as always!! Please find link for more information in the letter below:

Dear Friends,

As you know, my family and I have been actively involved with the Crohn's & Colitis Foundation, Long Island chapter for many years, participating in a wide range of activities to help fulfill CCFA's mission of a cure for Crohn's disease and ulcerative colitis.  

This year, my husband William and I are privileged to serve on the committee for Laugh 'til It Stops Hurting, the chapter's most critical fundraising event. We will be honoring my surgeon, Dr. John A. Procaccino, at this year's event. As most of you know, Dr. Procaccino has been by my side for many years as one of my greatest allies in my battle against this disease. We have been through four major surgeries together: while some of these surgeries have provided me with the best possible quality of life an IBD patient could hope for, one emergency surgery quite literally saved my life. Without Dr. Procaccino's unparalleled aptitude and surgical skill, I would not be here today writing this letter to you. And as a brief testament to Dr. Procaccino's character, I don't think I have to tell you there aren't too many world-renowned surgeons out there that would sneak away from his or her family on Thanksgiving Day just to check up on you in the hospital. He is, quite truly, one of a kind.

Thank you, in advance for any support you can give to this event. My family and I will be enthusiastically attending Laugh 'til It Stops Hurting, and we hope you can too.  If you cannot make the event, there are many other options for support, from sponsorships to journal ads and donations.  Everything you need is included in this invitation package as well as on the event website: http://online.ccfa.org/laugh_2015 

Over 80 cents of every dollar raised goes to CCFA's mission for a cure, while improving the quality of life for patients like myself and providing education and support services. Nothing is more important to me than to see an end to these insidious diseases. I hope you will continue to join us as we progress toward a cure. 

With Deep Gratitude,

Katherine Pearce 

If You're the Next Person to Say This, Be Ready to Lose an Eyeball

I just came across a short read that everyone (with or without IBD) should take one minute to read. After 13 years of living with IBD, I've heard it all, not excluding the 11 items mentioned on this list. I think that often people are nervous and just don't know what to say and end up saying the wrong thing. We've all done that, and I try to be understanding of "foot-in-mouth" disease. But the one thing that really hits me on this list is all the mention about dietary concerns. I have been told hundreds upon hundreds of times (not once by an actual expert in Inflammatory Bowel Disease) that I brought this disease and all its flares upon myself by my diet. It's the single most infuriating/obnoxious/ignorant thing you could possibly say to me. And not that it's any of your business, but the following are just a small sample of dietary approaches I have taken:

1. Gluten Free for 6 months: didn't do shit
2. Vegetarian for 1 year: didn't do shit
3. Dairy free for 6 months: didn't do shit
4. No food at all: I have been on eleven different fasts lasting anywhere from 7-14 days (it's amazing how I saw my symptoms get aggressively worse during this time, despite the fact that I would be only on IV fluids)
5. Caffeine free for 7 years: didn't do shit
6. Aloe pill supplements for 3 years: didn't do shit
7. Fish oil for 4 years: didn't do shit
8. I haven't drank a sugary drink (other than perhaps some fruit juice when on the verge of passing out) since I was eleven
9. I eat almost exlusively organic, and have since college ended 8 years ago
10. Refined sugar has been very near absent from my diet since the age of 12. You can call me "salt tooth" if you'd like, but sugar has never been my thing
11. No alcohol for 2 years (Since college, I drink sparingly)

I've tried many combinations of the aforementioned methods, as well as many others. As the article does mention, I cannot eat raw fruit, vegetables, nuts, seeds or corn during a flare as they make my symptoms much worse. Alcohol during a flare is a no-no, as is caffeine. But I would be willing to bet that I live a healthier, more active lifestyle than most people that offer me this super dumb advice. My lifestyle has always been accompanied by exceptionally healthy eating habits. Sure, I'll have a piece of cake for a celebration but that is far from a daily norm.

I have one close blood relative with IBD, and many other relatives with related autoimmune disease. It's genetic (note: in my case, but not in all). So, do me two favors:

1. Read this quick article about what to never say to me
2. Understand that I by no means brought this disease on myself, as I would have to be clinically insane to willingly sustain such chronic suffering

I'd like to sign off by saying that of course diet plays an exceptionally important role in ALL of our lives. Dietary changes have helped alleviate the symptoms of almost ALL diseases and it cannot be understated how crucial the role our diet plays in preventing and treating all illness. But unfortunately it does not cause nor cure everything. My yogi friend who eats religiously healthy did not cause her heart disease. My vegetarian-since-birth bestie did not bring thyroid cancer upon herself, and my 85 year-old grandfather who chain smoked for 25 years and ate nothing but refined sugar and carbs and never exercised more than walking between his house and his driveway was blessed with a long and full life (who would have thought- RIP Pops, you know I say this with the utmost respect).

Let's stop beating one another up and start doing things that matter, like looking for the real cause of IBD and then looking for a real cure.

#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)