PICs - AND NOT THE KIND CHRONIES ARE USED TO

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

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

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

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!!!!!!

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!!!!!!!!

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!)

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!