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!

 

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 kboccard@gmail.com for details on mailing checks). Secure, online donations can be made until race day:

http://www.active.com/donations/fundraise_public.cfm?force_a2=yes&ckey=trirockTRISTATE13&key=TRI13KPearce

Ok, pouch, let's do this!

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: http://www.booster.com/katiescrew

To donate directly to our campaign, visit: http://www.active.com/donations/fundraise_public.cfm?force_a2=yes&ckey=trirockTRISTATE13&key=TRI13KPearce

Thank you again for your support and generosity!!!


TeamChallenge after our first group training session!

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 http://www.active.com/donate/trirockTRISTATE13/TRI13KPearce.

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

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.

Eva's Birth Story

I don't remember meeting my daughter. But somewhere in the recesses of my mind, I can recall the emotion I felt the moment I was told she was perfectly healthy and had made it out alive. Someone took a picture of me and my baby at this moment, and although I look acned and battle-worn, it was a photo that I will cherish forever. The most precious moment of my life was captured for me to remember in a way other than my own memory. That was just fine. She is here. She is safe. And she is mine.

Saturday, January 26th started out as a fairly regular morning. With the exception of some sharp back pain, I felt as normal as any ninth-month pregnant woman might feel. Yet there was a feeling that something wasn't right. An innate instinct tugged at me, telling me to call the doctor. Finally, at 11:30am, I did. We arrived at the hospital in the early hours of the afternoon. After examination and monitoring, I was told that I was four centimeters dilated, 80 % effaced, and contracting quite regularly. I was told that we would be having our little darling that evening, that they just needed to check the thinness of my blood to see if I could get an epidural to undergo the cesarean section. I now knew that my baby was breech, and that there were several medically necessary reasons that I would need to give birth via cesarean. The bloods were fine and we were tentatively scheduled to go in at 6:30pm. I was excited. Today would be the day.

Moments later my OB and several nurses rushed into the room asking why the baby's heart rate had fallen off the monitor. I told them I hadn't moved. The nurses frantically checked the monitor while my OB did a manual exam. I was fully dilated and the baby was in major distress. "We need to get this baby out NOW!...NOW I said!!" my doctor screamed. As he held the baby inside me with his hand, the medical team frantically gathered and sprinted down the hall as they wheeled my bed into the OR. I lost sight of my husband. My cries became so hysterical that my vision became blurry, my whole world was collapsing. Within moments I was in the OR with my doctor shouting directions at the nurses, yelling to the anesthesiologists, "No time for an epidural! She needs to be out, NOW!" I felt the catheter scratch it's way into me, a tube shoved down my throat and the hands of doctors and nurses scrubbing and prepping my body as quickly as humanly possible. The anesthesiologist apologized and explained that they needed to have my body completely ready for surgery before putting me under as they needed to get the baby out before the general anesthesia reached her delicate little body. I gasped between cries and my world went black.

Eva was born at 4:35pm on Saturday, January 26, 2013. Evangeline Virginia Pearce, that is. She weighed 6 pounds, 3 ounces at birth and was 19 inches long. She takes my breath away every time I peer at her magical face. My chest pounds every moment of every day as I think about just how close we were to losing her. To losing our little miracle. Though the cord was wrapped twice around her neck, little Eva let out a raucous cry when she arrived, letting her daddy know that she was here to stay.

The 26th was both the worst and best day of my life. There aren't too many days that can claim that place in a person's heart. When I think back, I marvel at the utter joy, devastating fear and pure heartache that had touched my and my husband's life in a matter of just hours. I haven't slept much since. Sure, the 12 daily feedings and diaper changes are contributive factors, but mainly I haven't slept because I don't want a moment of my life to pass without being able to look at the little love, the tiny marvel that was conceived just as miraculously as she was born. On January 26th, I won the best kind of lottery there is.

Mommy meets Evangeline

C-Section Decisions for the Pregnant J-Poucher: The Date Revealed!

Where to begin? Much has happened in the almost two months since my last post. The good news is the babe is still cooking. And she now has a "tentative" birthday. My C-Section has been scheduled for Sunday, Feb 3rd at 11am. Thankfully, the Vikings will not be in the Superbowl so Billy can in fact be present for our baby girl's birth. She also has a name. Our little girl will be named Evangeline (Eva for short), and we have big hopes that she will live up to her namesake from Uncle Tom's Cabin. One thing I am certain of is she will be just as much of an angel to me and Billy (until she turns 2). Ha!

We spent another day in the hospital since my last post. I was having constant contractions again and needed another shot of terbutaline. This happened almost one month ago and I have been doing very well ever since. It has been concluded that the pouchitis has been causing inflammation in my pelvic region, and as all of your arthritis sufferers know, inflammation does not discriminate. My poor uterus has become an innocent bystander in my IBD war. Thankfully, none of these contractions have caused any dilation of my cervix, meaning they are fairly harmless, but need to be stopped by medication if they do not cease on their own. 

On the pouchitis topic, a 6-week course of Flagyl has seemed to do the trick. I am now finally off of the antibiotic and feeling well. The doctors still suspect the infection has not completely subsided, but because it is in a very manageable phase, we have decided to halt the medications for the interim, hopefully until at least post-birth. 

Another cause of (mild) concern is the C-Section. I have been followed by my surgeon, GI, OB and hematologist on a regular basis throughout this pregnancy, and all have slightly differing viewpoints on different aspects of my impending surgery. Should my colorectal surgeon be present or just on call? Should the incision be horizontal or vertical? Will there need to be a T-Shaped incision to take care of bowel issues? At what point should I switch to heparin from Lovenox to prepare for the section? These questions, along with several others, have become points of contention. As a chronically-ill woman, I have long been aware of the importance of the agency of the patient. It is so critically important that we are self-educated and aware of our treatment courses and methods of medical care. In defense of my team of doctors, there are no simple, straightforward answers to these questions as my situation is fairly unique (natural pregnancy post-J-Pouch surgery, with blood clotting disorder and previous scar tissue trauma). We have all (yes, I have been an integral part of this decision-making process) decided that:

1. My CR surgeon will not be present, but will be called and on stand-by while I am in the OR.

2. The incision will be made horizontally for two reasons: 1. This heals much more quickly and does not cut into abdominal muscle 2. It is safer. The one cause for concern is that I have a considerable amount of scar tissue in my lower pelvic region from previous surgery/complications from those surgeries. 

3. A T-Shaped incision will only be made if scar tissue or bowel issues are present. I have been warned that this is a distinct possibility, but will be avoided if possible.

4. I will switch to heparin this week. One cannot receive spinal anesthesia while on Lovenox because of risk of hematoma on the spine, which can result in paralysis. Heparin is a twice-daily injection (rather than once-daily) and is not as effective of an anticoagulant or as well-studied in pregnancy as Lovenox, which is why the switch to heparin is delayed for as long as possible. I will switch back to Lovenox post-birth.

I have been contacted by a few other J-Pouchers who are currently pregnant or who have been pregnant post-surgery. If you don't mind sharing in the comments section: how are you approaching your C-Section (or delivery)? I would love to hear from those of you again from abroad, as I find the cultural differences very interesting!

I suspect that my next post will occur after my family has grown to 3 (well, 4. We must count my darling Figgie Wigs).