Sunday, July 26, 2015

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.

Thursday, April 9, 2015

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

Readers! News again over at Dear Evangeline.

Tuesday, March 31, 2015

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.

Tuesday, March 24, 2015

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):

Friday, March 6, 2015

So Honored to Honor My Hero!!!


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: 

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 

Sunday, February 22, 2015

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.

Thursday, February 5, 2015


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)

Sunday, February 1, 2015

Surgery Report & Little E


Apologies about the pretty big fail at updating here over the last four days. My sweet little Eva was hospitalized on Friday with a very high fever and dehydration and, as you can imagine, our world's have been flipped a bit upside down. Eva should be heading home sometime today, so everything is on the upswing over here!

As far as an update on me, my surgery did not go very well. My surgeons were very upset with the outcome, but the good news is that I came out alive and without major complication. The cyst was much larger and more complex than they had foreseen and, so, they were not able to remove it. The only way to remove the cyst is to remove the entirety of my gynecological systems, as well as creating a new j-pouch. The risks of doing this were much too great and so they decided to cut a hole in the cyst, drain four liters of fluid from it, and more or less hope for the best from here on out. The chances of re-accumulation of fluid and further complications due to the cyst are very great. The other downside is that removal of these gynecologic  systems would not guarantee that a totally different peritoneal inclusion cyst would not form, it would only guarantee that the current cyst would be cured.

Of course, this news brings a whole new host of health issues and decisions to tackle, but for now I am just focusing on healing over here. Been running fevers and my heart rate has been very high, plus I am not back on food yet, so I will be in this place for a minimum of another 1-2 days. It would be a great understatement to say that I am itching to get home to my baby girl.

So- in short, been a pretty terrible few days but it's only up from here!

Friday, January 30, 2015

Post-op Day One

Well, Katie made it through the surgery without any complications.  Feeling under the weather now
with pain pump keeping the pain at bay.  Plan is to be out of bed this morning sometime for a walk and then maybe a nice cup of tea this afternoon.

Wednesday, January 28, 2015

Heading to OR tomorrow: Update Number 1

Ok- reporting as a very hungry pre-op patient over here, but I just want to throw out a few logistics. This blog initially started on Caring Bridge as an easy way to update friends and family when my parents, brother, husband and I have been too consumed with my care/surgery to effectively communicate with all of our loved ones (or too drugged, as in the case of the latter named). Anyhow- we'll be reviving that tradition over the next week, so come check out the blog for updates (though they will not necessarily be written by moi). Of course, please feel free to reach out to any of us personally as well, and we will all do our best to get back to you. Reaching out is always incredibly appreciated, and helps to keep our spirits up, even if you don't get a response I promise you it's lovingly accepted! Here is a basic account of what we know right now:

1. I'll be heading to the OR tomorrow morning (the 29th) around 11am at North Shore Manhasset hospital

2. I will be staying at said hospital for about 1 week

3. The details of my surgery are very vague. They will be removing the peritoneal inclusion cyst (which now logs in at 4 liters!), they will lyse adhesions from my small bowel and they will try to fix the source of these recurrent cysts, but they do not currently know what that cause is and, so, we are not exactly sure what we are dealing with as far as surgery length. We do know it will be an open laparotomy (this is the opposite of a laparoscopy, meaning my abdomen will be completely open to allow them better visualization). Unfortunately for me, this means a much longer recovery period and much longer hospitalization.

4. I am very, very hungry. Already. Seeing as I am not even 1/10th of my way through my NPO period, this is not promising (as far as my sanity goes, at least).

Anyhow- Just wanted to send out a pre-op update. If you'd like to reach out, this blog, my email, Facebook, my phone, text, etc. are all fine options, but do know that I will be totally incapacitated tomorrow and very likely incapable doing much of anything for many days thereafter. My focus will be on not watching food commercials, banning anyone from my room that mentions what they ate for breakfast, and trying to not get so pissed off when the nurses and my family shove the spirometer in my face every hour. But do know that your messages always put a smile on my face.

Love you all!


Wednesday, January 14, 2015


"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.