Friday, February 21, 2014

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

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!!!!

Friday, February 14, 2014

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

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 @ 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!

Wednesday, November 13, 2013

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

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!


Tuesday, October 22, 2013

Updates from the soon-to-be J-Pouched Triathlete!

Only 2.5 weeks to go! Getting both excited and nervous to see what this "pouched" body is made of. Training has been "tri-ing" (oh, the puns!), especially of late, but my pouch and I are still truckin' on. A fellow j-pouched blogger, Sarah Ringer, recently wrote a poignant post about self-esteem issues surrounding young women with j-pouches and ostomies. It really hit home. Here's why…

I used to be an athlete. A pretty good one at that. I prided myself on these abilities, and even took them for granted. So, despite dealing with ten years of a brutal disease and undergoing four major abdominal surgeries in the past two years and a difficult pregnancy, birth, four bouts of mastitis and many recent bouts of pouchitis, I expected my body to just DO as it used to. I thought that within a few weeks I'd be running 7-minute mile 5 K's with relative ease and I would be able to learn to swim well, even competitively in a short timeframe. Showing up on Day 1 and being (arguably) the slowest member of my triathlon team was a major self-esteem blow. I'm still one of the slowest. Fact is, my body is just NOT the same. Watching my middle-aged teammates blow by me on the road and in the pool hasn't been easy. Despite pushing my body to complete rigorous workouts six days each week for the past (almost) five months, I have come away feeling BAD about myself. That isn't cool.

I'd be lying if I told you I feel completely satisfied and proud of myself at this point, but what I can say is the rocky emotional road to this triathlon has led to a better acceptance of my new body, my new limitations. I have missed the last two team workouts due to stomach ulcers and pouchtiis, leading to an even lower sense of self-esteem. But it's important to keep reminding myself that I am going to complete a TRIATHLON, despite several bouts of illness over the course of my training, despite nutritional deficiencies and my body's struggle to regulate hydration. Despite the little sleep I get between frequent bathroom trips and a crying baby throughout the night. Each day my body and mind are EXHAUSTED. But I've pushed through and completed the vast majority of these workouts. I am not going to place first. I might even place last. But I need to keep fighting to find pride in the fact that my new body isn't perfect, but it's going to get me through my first triathlon.

So, for all you other ladies out there going through similar mind-*&*s, know that I'm right there with you. From adjusting to an ostomy bag then to a lifetime of one-piece bathing suits to cover these gory scars, to becoming acquainted with a new body that is not exactly athletic, I know what it's like. I just want you all to know that I know what it's like. This blog has connected me to so many other young j-pouchers, and I know we have all found comfort in that small, yet incredibly substantial idea that we're not alone.

Root for me on November 10th! I'll be thinking of all you other ladies as I cross that finish line. And, when all is said and done, I WILL be proud to be a j-pouched triathlete!

I would also like to thank the 90 of you that have donated to our fundraising campaign so far! WOW. I am truly inspired by each and every one of you. For those of you that would still like to contribute, there is time! Checks need to reach me very, very soon (email me at for details on mailing checks). Secure, online donations can be made until race day:

Ok, pouch, let's do this!

Friday, August 16, 2013

The J-Pouch-ed Triathlete?

As you know from my previous post, my husband and I are training for the TriRock Clearwater Triathlon, which will take place in Florida on November 10th, 2013. We have a big fundraising goal of $7800. Our charity, of course, is the Crohn's and Colitis Foundation of America.

The big question anyone has before j-pouch surgeries is "what will be my limitations be?" Signing up for the triathlon was all about testing my boundaries, seeing just how far my body will take me (and of course, just as importantly, it was about making headway towards a cure). It's been almost two months since I have started my training and I have made great strides from my humble beginnings as a bona fide couch potato. After four major abdominal surgeries and one pregnancy in the past two years, my body has needed a major overhaul. I can now say that I have graduated from beached whale (did I mention I did not even know HOW to do freestyle) to swimming 50+ laps and from wheezing after 2 minutes of running to comfortably completing three mile runs. Looks like this j-poucher just might finish this tri after all.

Though we're off to a fast and furious start, we have a long way to go with both training and fundraising. We've started Booster Tee-Shirt sales to put a little spice into our campaign, and are working on organizing a Happy Hour Event. Please consider buying one of our awesome tee-shirts or making a contribution directly to our campaign! Any donation, small or large, gets us closer to a cure.

To buy one of our lovely tee-shirts, visit:

To donate directly to our campaign, visit:

Thank you again for your support and generosity!!!

TeamChallenge after our first group training session!

Monday, July 15, 2013

Tri-ing for a Cure: Katie's Crew Tackles TriRock Clearwater!!

Perhaps you read my last blog post about my obsessive focus on ensuring that my little miracle baby does not get this brutal disease. At almost six months, we are still breastfeeding, largely because this practice reduces the incidence of Crohn's Disease and Ulcerative Colitis by close to 40%. Sadly, it's not a foolproof method. Considering Eva's genetic predisposition to this disease, I often feel my heart skip a few beats throughout each day as I ponder the very real possibility that she might too have to fight the same battle as her mother. I can't say whether Eva will be faced with these challenges, but I can say that Crohn's Disease and Ulcerative Colitis are affecting more and more children each day and pediatric diagnoses are on the rise. Breastfeeding my own child is not enough.

My husband, Billy, and I have decided that we need to help ALL of the children and adults affected by these diseases. We need to make sure that no more little boys and girls spend their days hooked up to IVs in hospitals. That no more young adults need to take semesters off for surgeries. That more men and women can start families and not have to fear about whether or not their children will fight a long and brutal battle with their health. We need more effective treatments. We need a cure.  

Billy and I are training for the TriRock Triathlon in Clearwater, Florida on November 10th to raise money to fund vital research for Crohn's Disease and Ulcerative Colitis. 82 cents of every dollar we raise will go toward this cause. If you're unfamiliar with these digestive diseases, here is why our mission is so important (and my story is just one. There are more than 1.4 million more. I'll try my best to keep it short):

In 2002, at the age of 17, I walked through the doors of my high school and crapped my pants. That is probably cause enough to throw a dollar or two our way, but I can give you quite a few more reasons. I kept crapping my pants for the next ten years. At work. At school. In the car. At the grocery store. You get the idea. Not only could I not control my bowels, these episodes were excruciatingly painful (both physically and emotionally) and would occur up to 40 times each day.

I was suffering from severe Ulcerative Colitis, an inflammation and ulceration of the large intestine. After years of hospitalizations and potent medications that caused me permanent kidney damage, dysplastic moles and arthritis among many other things, I was put on a drug called Remicade that was infused through an IV over the course of several hours. In February of 2011, my body went into anaphylactic shock during a Remicade treatment. I had become allergic to the last drug that was available to me. 

In March of 2011 I underwent a five hour-long surgery to remove my large intestine and rectum. My surgeon also created a pouch out of the end of my small intestine that would act as a substitute large intestine. An ileostomy was also created to allow the pouch to heal over the next few months. In June of 2011, I was faced with a second surgery to reverse the ileostomy so I could live with my new pouch. While I am grateful on so many levels that these surgeries were available to me and have allowed me to live a healthy life, it has been a very difficult road and living without a large intestine is far from ideal. I spent almost two months in the hospital in 2011. After my first surgery I had an extensive Portal Vein Thrombosis requiring months of anticoagulation. I also suffered an ileus and bladder infections. After my takedown surgery, I was re-hospitalized due to an abscess at my old ileostomy site and, in November of 2011, I needed a third major surgery due to the scar tissue that had developed from the first two surgeries. It's been a long road. And it's a road that will never end for me.

In November, Billy and I are running a course in Florida that does have an end. As I cross that finish line, I will know that I have won. It has been more than ten years since my diagnosis and since I have been healthy enough to even dream of completing such a race. Because of the research funded by the CCFA, these surgeries have brought me to a place where this is not a distant dream, but a reality. Let's make sure that the children diagnosed in 2013 don't miss out on decades of their lives. Help us run. Help us heal. Help us cure. Donate at

A big thanks for helping us along this course to a cure!!!!

Tuesday, March 26, 2013

Giving My Breast Effort

It took me eight weeks to stumble upon the recipe that saved my breastfeeding relationship with Eva. It's top secret, but I'll let you in on the key ingredients: nipple butter and coffee. Breastfeeding for us has, unfortunately, been at risk since Day One. First it was a latching problem. Then it was mastitis, a breast infection that attacks your body much like a vicious flu, the only startling difference being a delirium-inducing pain shooting through your breast every time you feed your child. Think stabbing your nipple with a sharp object, then shoving it just a few inches deeper into the depths of your breast. That's mastitis. Then it was mastitis again- only this time my fever reached an apex of 104.5 degrees and included a cheery trip to the ER. "Give that shit up already," seems to be the motto of family and friends. Though I can understand why they see "sadomasochist" stamped on my forehead, I just can't give it up. I am as incapable of stopping breastfeeding as Charlie Sheen is of being a douchebag. 

Why, you might ask? I'm convinced that Eva has a dark power of possession. She owns my breasts and it is something that I cannot control. Aside from black magic, however, there are some logical reasons I am so attached to our breast-milking relationship. A substantial decrease in the incidence of childhood leukemia, childhood obesity, autoimmune disorders and other illnesses in breastfed infants is one. The fact that it provides optimal nutrition for the first six months of Eva's life is another. While I respect those that "love" committing approximately eight hours of each day to allow your child to suck at your teat and exchanging sleep at night for your child's well-being, I'm certainly not one of those idealists. Quite frankly, I don't find it to be very enjoyable at all. Sometimes I break into a cold sweat as Eva approaches my breast. I fear her aggressive latch and the stink-eye she shoots my way as she grabs my nipple like a crocodile shaking its prey to its demise. Actually, it's kind of cute. No, really it is. Painful, but endearing.

Ok, I'll get to my point. I feed Eva from my breast because I don't want her to suffer. Not like I have. Exclusive breastfeeding for at least four months has been proven to reduce the incidence of Crohn's Disease and Ulcerative Colitis by as much as 40%. Taking this preventative measure is worth a lifetime of nipple bleeding, sleep deprivation, delirious fevers and anxiety. If there is anything I can do to save her a lifetime of pain, I will do it. Each time I toy with the idea of quitting, I gaze into her big puppy eyes and cry. Hysterically. No, Eva, I won't give up. I won't give up on you. I'm your Mama, and I'll do everything I can to protect you from those vicious poop diseases. Every. Damn. Thing. 

It's been almost nine weeks now and breastfeeding is far from kink-free for us. Each feeding is a new attempt. A clean slate. If I ever slept, I would dream of a pain-free, illness-free breastfeeding relationship for me and my little one. For now, I focus on the fact that each bleeding nipple and every high fever represents pain that I can endure so my Eva doesn't have to. Maybe it's just a little bit, but maybe it's a lot. Either way, breastfeeding has made me feel like a mother more than any experience thus far. In fact, it has taught me what it takes to be a mother: Big, huge balls and even bigger tits.