From U.C. to J-Pouch

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

2015-07-26T06:41:00.000-07:00

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"

2015-04-09T15:29:00.001-07:00

Readers! News again over at Dear Evangeline.

March 31: Oh Happy Day!

2015-03-31T12:55:00.000-07:00

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

2015-03-24T15:18:00.001-07:00

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!!!

2015-03-06T11:15:00.001-08:00

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

2015-02-22T11:48:00.001-08:00

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

2015-02-05T10:35:00.000-08:00

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)

Surgery Report & Little E

2015-02-01T05:55:00.000-08:00

Morning!

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!

Post-op Day One

2015-01-30T04:29:00.000-08:00

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.

Heading to OR tomorrow: Update Number 1

2015-01-28T13:47:00.002-08:00

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!

xo

MY TERRORIST

2015-01-14T19:37:00.001-08:00

"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.

THE PACKAGE THAT CHANGED MY LIFE: IBD CHANGES MY COURSE, YET AGAIN

2014-07-30T19:59:00.001-07:00

Not sure where to begin. I am exalted, broken-hearted, exhausted, defeated and empowered, all at the same time. This summer has been full of surprises- most of them unwelcome. Soon after my own discharge from the hospital, my grandfather ended up admitted for palliative cancer care; a surprise to those of us close to him as he had been running around baking bread for the entire town just a short time before. I missed three weddings, fairly unexpectedly, and am now feeling very down in the dumps as I was supposed to be boarding a plane to Ireland tomorrow.

Somewhere in the midst of this nightmare, a neat little package arrived on my front door stoop. It was a package that had been in the back of my mind all summer, but had been overshadowed by my own health and that of my very beloved grandfather. My husband tentatively presented this piece of mail to me just two weeks ago. It had been sent overnight in a Priority Mail envelope. The sender's address read: Columbia University. My heart skipped a beat.

Of the months upon months I have spent in hospitals, between my own issues, my father's, my grandfather's, and other loved ones, I have never been able to help but wish I could be on the other side of the hospital bed. It's been years that I have sat in that bed, or in that chair next to the bed, just dreaming. But, folks, my wish has at last been granted. I am so very pleased to announce that I was admitted to Columbia University's Postbac Premed program!

The news that I will be soon embarking on the track to doctor-hood has been met with very mixed reviews, mostly in response to the condition of my own health. But what these naysayers DON'T know about IBD, is that it prepares us for anything life throws our way. Sleepless nights? GOT IT! The sight of internal organs? SEEN IT! Tubes down throats and life-threatening complications requiring emergency surgery? BEEN THERE, DONE THAT! Oh- and have I mentioned how we, as IBD warriors, have more passion, more drive and more emotional investment when it comes to helping those in need?

Many comments have, similarly, referred to the fact that it will be 6-7 years before I can call myself doctor and an additional 3-5 before my residency is complete. Well, another thing IBD has taught me is that life is precious, unpredictable and, ever most importantly, we live it only once. No one knows if they will have the good fortune to be on this earth even tomorrow- what's the point of concerning ourselves with how old we are when we attain major life goals?

There are so many reasons to NOT embark on this arduous journey: my health, my daughter, my husband, the long hours, the hard work, the financial investment or the unavoidable stress involved in becoming a doctor. But I have so many more reasons to get ready, set and go. And so many of those reasons are the same as those just cited. My history of poor health does not hold the key to my future, my daughter will benefit greatly from a loving mother who is also a positive female role model, and I've never met a challenge without excitement and anticipation about the next curve ball and how I'm going to hit it out of the park.

Columbia, I'll see you on September the 2nd. You and I are going to show IBD what's up.

Until then, hoping positive vibes and good spirits on my current "side of the bed" can help ease the pain of my ailing grandfather. Pop- you've given me a hell of another good reason to fight my way to M.D. It's another road that won't be easily traveled, but that has never meant it isn't worth taking. You taught me that. And I'll think of you every step of the way.

Team Challenge- BIG news!!!!

2014-07-08T09:34:00.002-07:00

So I have some exciting news for a change! Well, it's both disappointing and exciting.

As many of you know, I was in the midst of training for a Team Challenge half marathon in Dublin, Ireland that is taking place on August 4th when I was blindsided with five small bowel obstructions and, shortly thereafter, found myself in the hospital recovering from yet another laparotomy. Unfortunately, this means that I will be in no shape to run Dublin in August and, sadly, I will have to forego this trip altogether. Those of you with IBD know that the absolute worst part of this disease is missing out on everything, and this trip meant a lot to me. IBD life is full of surprises, and they are rarely welcomed. BUT!....

Shortly after canceling this trip I was bestowed a great honor by the Crohn's and Colitis Foundation of America. I have been named the Honored Hero for the Team Challenge Tri State Triathlon team, which will race in Clearwater, FL on November 9th of this year. I am so humbled by this opportunity to (hopefully) inspire this team to swim, bike and run harder and faster towards a cure for IBD. Interested in joining us? Find all the info here. Participating in Clearwater last year was one of the greatest experiences of my life and despite having IBD I think I've had a pretty awesome life, so that's saying a lot! I promise it's an experience that will stick with you- in a very good way.

Can't participate? Consider making a donation here. This still reflects my Dublin fundraising efforts- but all of these funds go to the same great place.

I am so very excited about being able to participate in Clearwater- albeit in a different capacity from last year, but hopefully an equally powerful one. Hubbie, Billy, will be running the race in my honor, along with my bestie, Erin M., and hopefully we can even find a few more of you out there to join Katie's Crew!

WHAT TO DO WHEN A LOVED ONE IS HOSPITALIZED

2014-06-29T08:29:00.001-07:00

Yeah, yeah, I'm still here. Bad news is I'm starting to become lucid, too. It's always best when you're relatively unaware (or unconcerned) with what is going on due to high amounts of painkillers and other kinds of mind-altering drugs.

So, out of boredom I am going to write a post that I've been meaning to write for three years now. I have not written it because I didn't want to come across as rant-y or unappreciative or didactic, or any other kind of adjective that is unlikeable to the masses. But the thing is that I have a lot of experience in this area and a lot of people (fortunately) don't. My dad has undergone 7 major surgeries, spending months in the hospital and years in acute care, so I have vast experience as an observer, family member and advocate. I have had UC for 11 years and have undergone 5 major surgeries, spending a total of 3-4 months hospitalized, so I also have an intimate insight as a patient. What I want to write about is this:

What do you do when a family member or friend is sick, hospitalized or recovering from surgery?

Again, I am only writing this because I see the blank look of "I very much want to help, but have no idea what to do" on so many people's faces. And rightly so. If they and their families have been blessed with good health, why would they know what to do? I just think it's downright helpful and from a patient's perspective (I have many IBD friends!), so many of us say the same things over and over about what we expect and/or need from all you healthy people out there. So, here are the "Top Ten" things you need to know:

1. Reach out!!!!! Don't be afraid of saying the wrong thing. Send a text, call, leave a voicemail, send an email, leave a Facebook post or message. It doesn't matter your method, it's just very important that you do. It makes a patient feel like a million bucks when you do it, and if you're close to said patient, it definitely does NOT go unnoticed if you don't.

2. Don't expect a response!!! We are often overwhelmed by taking care of our substantial needs for rest and by the amount of people reaching out. We LOVE to listen to the VMs, read the texts and emails, but we'd be spending all of our days responding and picking up the phone rather than recovering and resting if we responded to everything. Trust me- your notes get read and they are SO appreciated.

3. Don't ask, "what do you need?" - I will never, ever ask anyone for anything, and a lot of patients are like this out of pride, embarrassment, or just a genuine sense of not wanting to bother anyone. JUST DO IT! Which takes me to my next point…

4. Drop off a meal, show up and babysit, or if you have no time to cook, send over a gift certificate for a pizza. It's so hard on a family trying to not only take care of another family member, but to also juggle all the essential tasks that "down and out" family member is not capable of doing. Trust me, just show up with something helpful to offer. It shouldn't cost much or take much time, but it goes a lot further than an expensive gift and is much more appreciated!

5. Don't forget about a patient's family. Sure, surgeries and chronic illness are hard on a patient, but they are even harder on a family. Call the patient's family and see how you can help, or as stated in #4, just show up at THEIR house and do their dishes or let them escape to the grocery store for an hour. Give them just a little time to feel human.

6. Always call before a hospital visit - this is especially true in those days when you are freshly post-op. I know that I am never up for visitors in those first few days. Your rest is too important and you are just feeling too downright out of it to interact with anyone- but that's just me. Others may definitely be up for a visit. Towards the end of my hospitalizations I am dying for visitors- but a 9pm visit is never exactly, well, welcomed by me no matter what the stage of recovery. All of you that have spent time in hospitals know what those nights are like!

7. If you can, stop by the hospital! Now, the hospital is not always close and everyone is super busy in their lives and of course this is not always possible or, as mentioned, even necessarily wanted by the patient. But when your jailed up in your room for a week, nothing can cheer us up more than an hour-long distraction from a loving friend or family member. It goes a long way in showing how much you care.

8. Keep your anxiety to yourself! We're the ones in the hospital with tubes shoved up all of our orifices, we have enough anxiety in our lives, so leave yours at home please!

9. Ask questions!!! It shows that you care about what is going on and if you don't ask questions, at least don't make assumptions. When I've been NPO (no food or liquids) for 10 days and come home to have my first meal, I don't need anyone asking me, "should you really be eating that?" Be an informed family member and friend.

10. We like presents. Especially ones that matter. Flowers always cheer me up, don't get me wrong, but a small donation to Team Challenge (that probably costs less than that bouquet) means much more, or go for a run and donate the proceeds to CCFA in the patient's honor through Charity Miles, or cook a meal so the family has one less thing to worry about. These are all things that make a real difference. What we patients really need is a CURE and on a very practical level, we also need some food in our bellies. It shouldn't cost much, but think of a way that you can make a gift that matters.

As a last note, just don't do nothing. You don't need to do all 10 of these things, of course, but just a card in the mail or offering an hour of your time to help out goes a LONG way. We're all busy, of course, but just remember that these are the times when friends and family are needed most!

Thank you, thank you to all of you for the absolutely overwhelming outpouring of love and friendship over these last couple of months. This was in no way in response to a lack of receiving all of these very cherished gestures, but quite the opposite. I'm really writing for those blog readers out there that aren't as lucky as I!

Feeling very lucky and loved,

K

Post-Op Update

2014-06-28T13:19:00.001-07:00

Ok, maybe I'll offer a short update. First time I've been able to flip the laptop open!

Surgery went very well. It was three hours long. The laparoscopy quickly turned into a laparotomy (meaning it went from scope to a midline vertical incision down the center of the abdomen). I had part of my small bowel resected and all of the fluid from the "cyst" was removed. They also removed a lot of scar tissue from my small bowel and my abdominal cavity. All in all, very successful, but not exactly "best case scenario" of no bowel resection/laparoscopic shorter surgery.

Things have been moving along slowly post-operatively. I was running a high fever, but that has been gone for more than 24 hours now. I am still NPO (no food or liquids), but had my epidural catheter removed from my spine this morning. Foley catheter has been out for a couple of days, too! Up and walking, not without support yet, but up and walking a bit nonetheless. Pretty severe abdominal distention still going strong, accompanied by now more severe pain (now that my "epi" is gone).

I was begging for a Sunday discharge, but that's not looking too likely at this point. Let's hope for Monday! I never like to see three of the same day of the week in the hospital in a row, and seeing how I was hospitalized for a few days the week before my surgery, if I wake up here on Tuesday that would mark the third Tuesday in a row being in this very uncomfortable bed! Aiming to minimize this hospitalization to 7 days- wish me luck.

I'll update upon discharge or if anything of significance happens. Oh- and I got the BEST SURPRISE VISIT EVER FROM THE MOST SPECIAL PERSON EVER TODAY!

For now- go get your Team Challenge on and kick this disease's a$$ for me, will yah?

Abdominal Surgery #5 is Knocking: OR Bright and Early!

2014-06-23T13:54:00.003-07:00

Ok, here we go! While I have been cursed with bad luck in many aspects of my life, I seem to always have the luck of the draw when it comes to O.R. times. Heading into NYPH at the crack of dawn tomorrow and scheduled to be wheeled into the O.R. at 7:30am. Already in the thick of my pre-op fast and already longing for a cookie. Sadly, I must bid adieu to good ole' F&B for quite some time, but if all goes well, perhaps I can celebrate the weekend with some Gatorade and then bring in July with a bang by indulging in my first nibbles.

I will try to coerce some family member or friend to update my blog tomorrow and Wednesday, but I am sure they will all be distracted and my ability to make threats or pleas will be limited. Though I know they are big fans of my blog because, when updated, they tend to get slightly less bombarded with texts and phone calls to tell the same story over and over. I LOVE that so many of you reach out during these times, though, so just because they can sometimes get stressed by the repetition, it shouldn't stop you from reaching out if you'd like to! Billy and Pops will be with me tomorrow, and brother M will be at some point as well. They'll be answering my cell, too. Though I am not a "believer," if you will, please pray that I get hooked up with some super posh penthouse hospital suite post-op.

Ok. Deep breaths. I've got this....

IBD AND SOCIAL ISOLATION: WHAT'S IN YOUR BAG OF TRICKS?

2014-06-22T18:29:00.003-07:00

Dress for Mike & Kim's wedding

Ho hum. Just over 24 hours pre-op and checking out the dress that I had ordered for my very dear friends' wedding that hubbie and I were supposed to attend last night. Hubbie finally pulled the duct tape out after 36 hours of hearing me obsessively rant, "we should have been there. We should have been there. We should have been there."

I think that, perhaps, the combination of being a stay-at-home mom with a limited social life and living with chronic illness makes missing events such as these even more piercingly regrettable. Not to mention the guilt of being a no-show.

For all my IBD friends, or my readers living with chronic disease: what coping strategies do you have in your pocket for dealing with repeated social isolation and unexpected disappointments? I feel like my bag of tricks is almost empty, and I could use a few more.

Some creamy gelato in my belly is about all I've got for now...

Mystery Surgery #5 - Strictureplasty or Bowel Resection? #IBD problems

2014-06-20T15:05:00.001-07:00

Hello IBDers!

Just a quick post. Was discharged yesterday after yet another small bowel obstruction (SBO). It's getting old, this whole IBD game. I am finally headed in for abdominal surgery #5 on Tuesday morning and I've never been so anxious. So many medical disagreements and so many unanswered questions. My consent form looked like this:

"Laparoscopy, possible laparotomy, possible bowel resection, possible strictureplasty, possible blood transfusion and removal of peritoneal inclusion cyst"

Upon asking how long my surgery would be, I was told, "It's impossible to say." Upon asking how long my hospitalization would be, the response was, "At least five days, but by now you know that is also impossible to predict." I was told the likelihood of laparoscopic success was low, but at least they would "fix up my scars, make them look nice." I've been told by many other doctors that removal of more bowel will result in "big problems for me." How helpful! Just pass along another Xanax, thank you very much!

Many of you know that indescribable feeling of laying on the crucifix-form table with the anesthesiologist leaning over you: the moment of no return. When I "go under" on Tuesday, I will have no idea how much of me will be left upon waking up, how my life will be affected, or what the road to recovery will look like. All I know is recovering from a surgery like this SUCKS. I hate nothing more than NG tubes, than being NPO for five, six, even fourteen days. Than being away from my little one. And that's just a small sampling of all that I loathe about my upcoming experience. But at least I have the man that invented strictureplasty operating on me. And at least I have perspective.

You'll be hearing from me during this journey, for sure. For now, let's all keep our head above water, and check out my view as a Mama dealing with this BS over at Dear Evangeline!

PICs - AND NOT THE KIND CHRONIES ARE USED TO

2014-05-24T10:39:00.000-07:00

So, I've been pretty negligent about writing here or over at Dear Evangeline as of late, mostly because I've been sick. But, like all the other times I've been diagnosed with something strange and snarly, I'm coming here to reach out to all of you IBD gals and girls to hopefully connect with someone else out there that is going through similar crap (why is it so difficult to avoid puns when talking about IBD?).

So three hospitalizations so far for 2014, but thankfully the last one yielded a definitive diagnosis: Peritoneal Inclusion Cyst. Here's the issue: they are exceptionally rare and even in the vast metropolitan area of our nation's greatest city I am having trouble finding a surgeon/doctor that has experience with PIC. In fact, my surgeons and doctors have spent the past two weeks passing the problem along from one to the other and then back again. GI thinks its in colorectal and GYN court, but neither GYN nor colorectal surgeon want to take it on and keep passing me along like a hot potato. GI and radiologist think this enormous tumor/cyst (measuring 12 x 11 cm. and containing 500cc's of fluid) is causing my bowel blockages and rectal bleeding as it is causing major displacement and distortion of my J-Pouch, while pushing against the site of anastamosis and seemingly causing loops of small bowel to twist. Colorectal and GYN don't agree and believe I have additional adhesions higher up in the bowel causing these recurrent blockages and have diagnosed me with "chronic small bowel blockage." All agree something needs to be done about the PIC, though, but no one wants to take care of it.

So, IBD brethren, I come to you for help. I am on my way to Interventional Radiology to see if it can be drained percutaneously (though I have been told there is a low probability of this being effective as I have many adhesions in the way). Next step is another major laparotomy. Problem is, no surgeon wants to touch me. The cyst is occupying my right abdominal cavity, shifting my organs over to the left and is interfering with many different systems, making it easy for my GYN and colorectal surgeons to wash their hands of it. If IR doesn't work, I'll need a surgeon. Anyone have any NYC recommendations? My docs have been consulting with GYN oncologists, but they too want to bounce it back to colorectal. So who the hell will do this surgery? Anyone? Anyone? Of course crossing my fingers big time for a successful IR intervention.

In my brief research on PIC, I noticed that almost everyone out there that is so lucky to encounter one also has IBD, usually Crohn's. So- any of you Crohnies out there know anything about PIC?
It seems as though only 228 cases have been reported in the past 19 years, but hoping one of my readers is one of them.

And lightening strikes again…..

Team Challenge Rides at SWERVE Fitness for CCFA

2014-05-21T18:34:00.000-07:00

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.

THE CANCER OF IBD

2014-05-17T04:11:00.000-07:00

January 2011: It's 9am and I finally feel well enough to make my way to the kitchen. I have spent the past three hours in excruciating pain while also losing significant amounts of blood. The longest I was able to avoid la toilette all night was one hour and Prednisone had my mind racing for the time in between. I slept an hour or two. Hell, better than last night at least.

I look in the fridge and find myself frightened of everything I see.

"Do I eat the strawberries for their anti-inflammatory effects?

"No, they could cause a mechanical blockage."

"How about an egg with Spinach to help with my iron deficiency?"

"No, the spinach will have me in the bathroom every 20 minutes instead of every 40."

Today: I feel hurt that friends and family think I bring this on myself by what I eat. If they only knew how much excruciating thought went into everything I put in my mouth. If they only knew the cost of my organic grocery bills, probiotic bills, aloe vera pill bills. If they only knew that diet has oh so little effect on this genetic assault of my mind, body and soul. I know this because I haven't eaten in three weeks. I know this because I've tried every so-called "ulcerative colitis-friendly" diet under the sun. I know this because there is not possibly one more book I could read or one more diet I could try. This disease runs deep inside me. It's at my core. In my DNA. There is no running from it. There is no eating it away.

There have been many medically necessitated fasts in my decade with ulcerative colitis. Not because food is the cause, but because my digestive system was simply too wrecked to put anything into it. This time around, I can't eat because of the pain. I can't eat because of the fear. I can't eat because my mind won't let me. Each time I put something into my body to nourish it, I am punished with mind-blowing pain and a fear that it won't make its way through. That I'll land myself another trip to the hospital to have yet another surgery to save my life from yet another small bowel blockage. This is no way to live. I don't wish this disease on the dead.

IBD is not IBS. IBD is not just diarrhea. IBD is not caused by the patient. IBD has deadly complications. This is why, after 9 years of silence, I decided to speak up in 2011. No one knows how horrifying IBD is because we patients rarely have the guts to face our disease and almost never have the extra strength to publicly discuss its brutish consequences on our daily life, our family and our conscience. IBD is a cancer without the sympathy. We IBD warriors have done chemo, we've been through the endless surgeries, the nausea, the pain, the fear, the vomiting, the complete disruption of life, of self, of sanity. But IBD and Team Challenge aren't ringing in the research funds like Susan G. Komen because the misconceptions about these diseases run deep. Sure, some Crohn's and UC patients with mild disease can achieve remission with diet and alternative therapies, just like some cancer patients. But IBD isn't caused by food anymore than cancer is. And I don't encounter too many cancer patients who are asked to undergo fecal transplant. IBD really is such a "shitty" disease.

But the point is, these stigmas run so deep. Perhaps the most painful part of this disease is not the physical suffering, but the uneducated and downright cruel assumption that we do this to ourselves. That my disease is caused by me. It's like having cancer, but having everyone look at you like there is such a simple fix. Like YOU are the cause. YOU are the problem.

But, the simple fact remains that there are too many adults and children living in fear every day. Too many of us are unable to live because there is no cure. Until a cure is found, IBD patients will live with the consequences of these diseases from the moment of onset to the moment of our death, with often nonexistent periods of remission.

Of course we should be raising money and awareness for the diseases that have high chances of sending us to the grave. But shouldn't we also give thought to the diseases that have so many trapped in a living grave?

Donate today.

RUNNING WITH A J-POUCH

2014-05-01T10:23:00.002-07:00

Hello, fellow IBDers! I've started a "different" blog, which is why this one has been so neglected as of late, but today's post was on running with a j-pouch. If you'd like to check it out, click here.

On this topic, however, I'm wondering if any of you out there are runners and have a j-pouch? If you're willing to comment publicly on here, that's wonderful! If not, please reach out to me via email! I would love to be in touch with someone who is in the same running "shoes."

Hope to hear from some of you!

To health and happiness for all,

Katie

Win an I-Pad AND Cure Crohn's Disease and Ulcerative Colitis!!!!!!

2014-02-21T05:19:00.000-08:00

Enter TODAY to win an Apple I-Pad Mini ($400 retail value). The raffle will be held on April 15th, tickets are $20/each and we are limiting the pool to 100 tickets.

Why should you buy a (or many) tickets? To help the 1.4 million Americans suffering from Crohn's disease and ulcerative colitis. All the proceeds from raffle sales will go directly to the CCFA to fund vital research for better treatments options and, of course, a CURE for these debilitating diseases.

To buy a ticket, simply click on this LINK and make a donation (for every $20, this will buy you 1 raffle ticket). If you would like your donation to count as a raffle ticket, please EMAIL me to tell me so (otherwise it will be assumed that you are simply making a donation).

If you would like to buy your raffle tickets with cash or check, please email me for details.

Best of luck to you! And thank you for making a difference by participating!!!!

Dublin is calling, but so is Ayla!!!!!!!!

2014-02-14T12:24:00.000-08:00

So "Katie's Crew" is at it again! And of course we are, there is still no cure. My father, Peter, and I have signed up to tackle the Dublin half marathon on August 4th and have also promised to bring $9,000 to the Crohn's and Colitis Foundation of America, to provide vital funds for research to bring better treatments and, ultimately, a CURE for the 1.5 million Americans suffering from these debilitating digestive diseases. If you've been a follower of my blog, there is no need to tell you that pediatric diagnoses are on the rise and more and more adults are diagnosed every day. Symptoms often have an acute onset. I, for one, went from being an extraordinarily healthy 17 year-old to abruptly spending the next decade + on terrifying medications, spending months hospitalized, undergoing major abdominal surgeries and being in overall very poor health. IBD does not discriminate. Sadly, chances are, either you or someone you love will need the assistance of CCFA at some point in your life.

So, who needs you NOW? Children like 2 year-old Ayla, who is able to survive only via a feeding tube. She has never tasted food and, until we find better treatments, she probably never will. It's 7 year-old Doobee. Diagnosed at the age of 4, Doobee has undergone treatment after treatment and is not even a candidate for colon surgery as the damage to her small intestine is too severe. Grassroots efforts, like ours, have been getting us closer and closer to a cure for years. It's people like you and me that fund these research efforts. Without us, patients like Ayla and Doobee (and even me), would not be able to survive. Now the goal is to let people like Ayla and Doobee LIVE. To taste food, to run around... to have a childhood and a long, fulfilling life.

This year we have a few twists to our fundraising campaign.We of course have our fundraising site, where donations can be made at any time (why not now?). But we are also offering a few other fun ways of getting in on the good:

1. On Sunday, May 18th, we will be hosting a tour bus that will take guests to three vineyards on the North Fork of Long Island (all-inclusive, with boxed lunch). Tickets are $150, with proceeds going directly to CCFA. If you would like to reserve a spot on our bus, please mail a check for $150, made out to "CCFA", to my home (email me for address information @ kboccard@gmail.com). You can also make a donation of $150 directly to our fundraising page, but PLEASE email me to reserve a spot on the bus. A 50/50 cash raffle will also be held on the day of the wine tour.

2. We are also hosting a raffle for a brand new, 16GB Apple I-Pad mini. Raffle tickets are $20/each. The drawing will be held on Tuesday, April 15th (hopefully it will bring some joy to "Tax Day"). Again, a check can either be made to CCFA and mailed to me, or a donation can be made on our fundraising page, but again EMAIL ME so I know you would like raffle tickets for your donation.

Another fun Happy Hour on the Beach is in the works, and will be planned for sometime in June or July. Details forthcoming.

Here's to another successful year of Team Challenge! "Katie's Crew" has raised, to-date, almost $70,000 for CCFA-funded research (BIG shout-out to my major cohorts, Regina Orelli, Gabrielle Orelli, Mary Boccard, Peter Boccard, Chrissy Whiteman & Billy Pearce). We are so honored that YOU have chosen to be a part of our miracle march toward a cure.

Meet Ayla. Two year-old Crohn's patient, making the best of it!

Officially a J-Pouched Triathlete (because of YOU!)

2013-11-13T05:49:00.000-08:00

I signed up for Team Challenge for two reasons: 1. to push my physical limits and see what my body (and mind) are made of and 2. to use my unfortunately close connection to IBD in a positive way: to find a CURE. But, as I sit here today sifting through the pictures of event weekend, trying to find the image that best sums up my experience with Team Challenge over the past four+ months, I find that I am not drawn to the picture of me running down the shoot, crossing the finish line. The image that best captures the high emotions of the entire experience is one of my teammates and coaches running in one of the most amazing, courageous and determined women I have ever met in my life (yes, you Pam!). And those people running her in? They were just as incredible.

For those of you that have followed my blog from the start, you know that 2011 was the most challenging year of my life. Yes, it was the year I married the most wonderful man on earth, but it was also defined by Remicade failure, anaphylaxis, three major abdominal surgeries, months of hospitalization, blood clots, abscesses, small bowel obstructions, and many more trying episodes after battling ulcerative colitis for the preceding ten years.

Anticipating the birth of our incredible miracle in January of 2013, I knew this year was going to be great. I just didn't know how mind-blowingly great. And the thing is, what made this year THAT great had nothing to do with ME or my own health. The best thing about 2013? Eva, of course, but also Pam, Patty, Jan, Christine, Kerin, Billy, Mark, Vicki, Jim, Carolyn and the beautiful, yet challenging stories that brought us all together. I've been on many teams in my life, but this was the first team I have ever been a part of where everyone was there for something much bigger than themselves. The pure altruism of our team, and the larger Team Challenge team, permeated the atmosphere of the weekend. The result was intoxicating.

And addictive. The car ride home from the airport was marked by depression, sadness, and a very real withdrawal. But, as I've learned from my TC teammates, we've always gotta look on the bright side. So, here's to TC 2014!

I also need to thank each and every one of you for contributing to that altruistic atmosphere of the weekend. We received a total of 102 donations (but many by teams or couples, so the number of donors is substantially higher), and we raised $11,410 (146% of our goal!!!). You all made fundraising for this very worthy cause EASY. Billy and I were overwhelmed by this sense that each of you just wanted to help. We didn't have to entice people to donate by hosting events or selling raffle tickets. Every single donation we received was made, not because you might win an I-Pad, but because you wanted to HELP. We were so incredibly touched that we were powered to 146% of our goal by the pure selflessness and generosity of our friends and family. This experience has proven my suspicion that humanity is, truly, innately selfless and empathic (those economists have NO clue what they're talking about!). An ENORMOUS thank you, on behalf of CCFA and the 1.5 million Americans suffering from IBD (including myself!).

Oh, and as a side note, yes I can now officially call myself a J-Pouched Triathlete!