http://www.youtube.com/watch?v=7-K2B1-6cQk

Do you pledge to be a pain in the butt?  Until a cure for IBD is found.

It seemed like a good idea the way that all things seem like a good idea at first. I told my Mom, and this was her exact reaction, “What? You’re going to run a half-marathon?” My Mom laughing at me should have been - for a normal person - a road-sign to turn around, to rethink the plan. But no, instead I smiled and said, “Yes!”

But this story doesn’t really begin with me. It begins with an email. I met my very dear friend Taylor through The Gutsy Generation blog. Without fail, we would text or email daily - but we had never met in person. We were enthusiastic to meet in person (I know, it sounds like a cheesy romantic comedy, but stay with me), but it seem idealistic and near impossible between our school schedules and the geographical distance. But - if there’s a take-away message to this blog post - never, under any circumstance, underestimate two gutsy girls.

And so, one day in June, Taylor and I decided to run the Niagara Falls International Half-Marathon. Crazy? Yes. Gutsy? Certainly. We were both runners already and it was a fantastic excuse to meet in person. The preparation got underway with the creation of a ‘GUTSY MARATHON MIX’ (yes, in all caps!) and the continual sharing of songs to be vetted for the playlist. I booked my flights - it was all happening for real.

I’m not an especially athletic individual, but in the last few months since my surgery in January, I’ve hiked Machu Picchu and completed a sprint triathlon, so it only seemed right to continue on in my crazed athletic quest. I had told several people about the race, including my roommates who made the most adorable signs for me around our apartment. Early Thursday morning, I boarded a plane and met my very good friend in the flesh. And it was as if we’d always known one another. We continued to find little things that fueled our theory that we’re the same person (e.g. we use the same toothpaste, go to schools with the same initials, etc) - we might have become friends because of our IBD, but we remained friends because of who we are as people.

The half-marathon was not for IBD awareness, but that didn’t deter us. We made shirts that had our last names on the back, our year of diagnosis, and then ‘Colonless 1’ and ‘Colonless 2’ on the sleeves. In a word, we were psyched. Morning found us quite early on Sunday, and we gathered in the kitchen, making our marathon breakfast, grinning sheepishly at each other and trying to imagine completing the 21 km course.

The day was perfect - perfect weather, perfect scenery, perfect. The course followed the water and with the changing leaves, it was a beautiful (albeit very long) Sunday run. People were cheering, holding water on the side of the course, there was even a little boy with his hand out for high-fives (of course I stopped and had to restrain myself from asking his parents to take a picture with me). It was just me and my iPod and the bounce of my braid against my back as I ran. Just open road and sunshine and a very big, but attainable, challenge ahead of me. I began the race to “We Are Never Ever Getting Back Together”, my ostomy anthem, and was ecstatic to be able to listen to my gutsy marathon mix during the race. There were moments when it was hard and my feet were sore, moments when I tried to drink the water while running and instead doused myself in it, and moments when the sound of the crowds cheering and the cow-bells ringing could only make me feel so happy to be where I was.

I felt this exact way in Peru and during the sprint triathlon - you look forward to the finish line so much because there’s a sense of accomplishment and awe, but those last few feet when you can see it, you want to turn around and do it all again. I sprinted the last 100 meters or so, crossed the finish line, which was amazingly at Niagara Falls, and was given a pro-style aluminum-like cape and a medal. I. Had. Done. It.

Now to get all philosophical on you: In life, and especially life with IBD, there are no guarantees. There are ups and downs, times when you feel awesome and times when you’d prefer to pull the covers over your head and pretend the world wasn’t waiting. Taylor and I had a mantra the entire weekend leading up to the race, “Hell or high water”. We were both sick or injured in some degree, but were determined and completely obstinate - we were running the race and nothing could stop us.

Hell or high water, people. Hell or high water.

Jennie

At ImproveCareNow’s Fall Learning Session, the Patient Scholars and parents had a special breakout session together. At the parents’ request, Jennie and I (Sami) have co-authored a list of What We Wish Our Parents Knew navigating IBD through our teenage years:

I was standing in a dimly lit ballroom, full of researchers in their weekend clothes, eating celery when I saw her coming towards me. Her being my friend and fellow PACer Sami, a backpack on and a big bag over one shoulder, a wide grin breaking on her face. We ran at each like you see in those slow-motion movie scenes, met each other in a big hug, then, smiling at one another, introduced ourselves in person for the first time. This is the funny thing about gutsy people meeting - we know each other in a way that others don’t, even though we’d never met face to face. And just like that, it was a gutsy friendship at first sight.

We were abuzz with excitement in the nerdiest way - surrounded by researchers and GIs - we couldn’t keep from smiling at the scene. The ImproveCareNow Learning Session was completely novel to me in how Sami and I, as the two C3N Project patient scholars, were included in a conference designed for researchers. It was sort of like looking over the fence into someone else’s backyard, and all of the researchers were more than welcoming and excited to have us there. In case it is not abundantly clear by the end of this post, I am a huge researcher groupie - like huge, I was geeking out the whole time - and was so thrilled to be a part of the Learning Session.

Sami and I begrudgingly discovered that we had been given individual rooms - a thought which would likely please someone else but not us - so we decided to remedy the situation and move her things into my room (because it would have been a tragedy to have lost bonding time!). The first night we stayed up way past our bedtimes sharing stories and showing off the things we had brought to put on our storyboards. Finally by 1:30 AM, we conceded that it was probably time to go to sleep since we had to rouse ourselves at 6 AM, so we climbed under the covers and said good-night.

Saturday was filled with so many incredible things that it’s hard to recount them all, for any words I pick cannot accurately describe my enthusiasm or the entire experience. Having been given access to the Twitter account so we could send real-time updates, I became (even more of a) Twitter addict, tweeting everything from that first breakfast (Chicago was so ready for me with all of the bananas!) to quotes during the opening remarks. As someone who has IBD, it was really humbling and phenomenal to see all of these dedicated researchers and doctors working to improve care in pediatric IBD. I have found myself over the years struggling to establish medical legitimacy for my disease, and yet amongst this group, everyone understood, encouraged, and believed in youth with IBD - it was unbelievable.

We got to attend a session with parents and it is something I will never forget. Their faces were bright with enthusiasm, their children so young and hopeful, but their futures unsure. There was relief in their faces when they saw me and the other patients - knowing that their own kids with IBD would be okay and happy and smiling and at school and living life. I had never thought of my parents in that way before - the uncertainty, the fear, the love for their children - and I was incredibly touched by their compassion and insight into what it is like when your child has IBD.

The patients and parents had set up storyboards on the periphery of the conference room, and I would peruse them with Sami at my side, the two of us falling in love with all of the children. There is something odd and unnameable about looking at a child and knowing some of the IBD challenges in his or her future - those nights when there’s nothing to do but cry, days in the hospital falling asleep to daytime television, and times when the very thought of leaving the house seems impossible. But I know too that there will be moments - bigger and greater than the moments of pain - where the world will open right up for these kids and they’ll be unstoppable. I wish I had met them in person - but that can be my next trip to meet my little IBD crushes.

For the last day of the conference, Sami and I had been asked to choose our ‘IBD theme song’. On Saturday night, Sami and I laid on our bed, exchanging song options until we had found the perfect ones. The big reveal of our IBD-theme-song-extravaganza had been saved for the very last part of the conference, and we handed over the songs on a USB stick.  But when it came time to announce the songs, instead they called Sami and I to the podium. We got up and began to laugh nervously as we threaded our way through the sea of chairs and tables. Sami went first and played ‘The Fighter’ by Gym Class Heroes and we began to dance at the front of the room. Upon introducing my song, I explained that it was an ode to my colon - and ‘We Are Never Ever Getting Back Together’ by Taylor Swift began to play. The researchers laughed and clapped as Sami and I began to dance again and we were laughing with them.

It was the conference I’d be looking forward to for so long, enjoyed so much, and was over way too soon. Before I could blink, I was sitting on a plane bound for Boston. All of my roommates were out when I came home.  I unpacked and called my parents, telling them all about the trip and the countless amazing things that had happened. The next day, I went to the gym and just before I put my headphones in, a certain song came over the loudspeaker and I couldn’t help but grin. ‘We Are Never Ever Getting Back Together’ was on and I briefly considered taking out my ostomy and dancing, but felt that the joke would be lost on my college peers. I put my headphones in, the smile stuck on my face, thinking of my weekend and the great things to come for all pediatric IBDers.

Jennie

I'll start by saying writing this post has caused me internal agony - and I'm not talking about the gutsy variety, but more like the heart-wrenching writers' block variety. Why? I've been asking myself that from the time I first sat down to write this in the airport nearly two weeks ago. I think it's because I still can't comprehend that the Learning Session (henceforth known as ICNLS) is over.

As the inaugural Patient Scholars, Jennie and I traveled to Chicago the weekend of October 5 - 7 to work, learn, and represent the PAC, ImproveCareNow's Patient Advisory Council, at ICNLS. The "pack" is a group of motivated high school and college students with IBD, dedicated to paying our experiences forward to benefit ImproveCareNow's interventions and the next generation of pediatric IBD patients.

ICNLS is a semi-annual opportunity for clinicians and researchers representing ICN care centers around the country and London to come together to share and inspire each other. This Learning Session integrated Jennie and myself as PAC representatives to learn from the team presentations, participate in PAC leadership brainstorming sessions, and interact with the care teams. As the commencement ceremony of our initiatives as Patient Scholars, we hardly had a moment to reflect on our incredible circumstances. Yet, despite the restless nights spent in awe of our company, I couldn't have asked for a more energizing weekend in IBD wonderland.

Exhilarating. Fast-paced. Wonderful. Inspiring. Incredible. Over. When Jennie and I danced to "We Are Never Ever Getting Back Together," a song Taylor Swift wrote especially for Jennie's dear and departed colon, we didn't yet realize the words would later hurt. For the record, I don't expect to never ever see you again, but even six months can feel like forever when you know what's out there. A group of strangers never felt more like home. Thank you.

The theme of the Learning Session was Transitions, in hindsight even more appropriate than I initially realized because the Learning Session itself was a notable transition for me. A Great Point.

The first Great Point in my IBD career was The Diagnosis. My first night in the hospital I spent in room 310. Vulnerable. Alone. Guilty. Feelings I should have never felt, but I did. Vaguely hopeful. For what? I didn't know then. Remission? I didn't realize I could or expected to engage in a deeper goal. I thought Moving On meant fighting IBD until I felt as if the whole dirty mess had been a crazy dream. I wasn't a sick kid, not in my stubborn mind. There have been other significant moments in my journey since then (scopes, Camp Oasis, the first enema, the Prednisone Disaster of 2009, learning that perms do not in fact make steroid face look any better), but none as life-changing as The Diagnosis or worth the title of Great Point.

Until now.

I wish I could've known I'd spend two incredible days in a much nicer room 305, only five digits and (less than) five years off. I wish I could've heard the sound of Jennie and I laughing on the twelfth floor of our grand hotel in Chicago, sharing stories about flying with Miralax and ostomates climbing literal mountains. I wish I could've felt the rush of our breakout sessions, planning our initiatives for the coming months, feeling the most beautiful kind of butterflies in my stomach rather than stabbing pain. I wish I could have seen Molly, Diane, and Sydney holding up a beautifully ridiculous little sign in the airport and us laughing as we walked to the hotel - the beginning of the next Great Point. I would have smiled more. I would have reached out more. I would have felt okay more. Perhaps I would have known too much. Perhaps I needed the struggle to know why I'm working for change.

ICNLS is over, but this is just the beginning of a new Moving On. A more beautiful and hopeful Moving On.

Are you ready? We are.

An Alcatraz Bathroom Installment:

Before I begin, I share with you the following from the fountain of all knowledge, THE WIKIPEDIA, regarding a particularly horrifying story published by Stephen King in his fifth short story collection, “Just After Sunset.” The story is called, “A Very Tight Place.”

"Curtis Johnson . . . is lured to a deserted construction site by his neighbor, Tim Grunwald, with whom he's been having a legal dispute involving Curtis's beloved dog, Betsy, who was killed by Tim's electric fences. He is confronted by Tim who forces him into a Port-O-San, tips it over and leaves him trapped there in the heat of a Florida summer day to die. With no way to get help, Curtis must figure out how to escape or die.”

Can you think of anything more disturbing? Being tipped over in a port-o-potty, on a hot day, and being literally consumed by “what’s down there”? I think about this EVERY time I use a port-o-potty.  By the way, I’m not going to spoil how the story ends. If you just can’t go on without my giving away the ending, I must quote two great modern characters from the classic film, “The Princess Bride,” which recently celebrated its 25th anniversary:

Inigo Montoya: I must know.

Westley: Get used to disappointment.

Let’s be honest, shall we? We’ve all been there. You gotta go, but the only option is a nasty-looking port-o-potty. (Also from THE WIKIPEDIA. The following names for these gizmos that I have been referring to, and will continue to refer to, as a “port-o-potty” (even though I REALLY like the last one): P-Pot, Porta-John, PortaJane, Port-O-Let, Port-a-Loo, Portaloo, Porta-Potty, Tidy John, Kybo, Biffs, Standard Porta Potty Restrooms and Toi-Toi).

A problem unique to port-o-potties is that I find that there’s no, absolutely zero, thought for the next user. “Hey, this thing is already SO NASTY. I’m not going to spend two seconds wiping my feces off the seat for the next person. That next dude isn’t expecting a positive experience.”

I cannot express the level of nausea that I am currently experiencing just thinking about this. I could barf right here at my desk. Which would be bad. I’m taking deep breaths to calm the lightheadedness. Also small sips of Diet Coke.

Unlike other Alcatraz Bathrooms, upon entering you really have no choice but to do something with the seat. I don’t usually see the option of a toilet seat cover, so you’re relegated to using TP. I have found the TP dispensers in port-o-potties to be of the sub-standard, high-friction variety. You know what I mean. You can’t grab off a long piece easily. In fact, you have to slowly pull (or pull and turn) so as not to break off a piece that is utterly useless for your purposes. Did I mention that, if you’re in this situation at all, you gotta go? This preparation takes time, people. TIME YOU MAY NOT HAVE.

Fact is that many of us have no choice. In fact, WE SEE THE PRESENCE OF A PORT-O-POTTY AS A BIT OF A SAVIOR. Isn’t that sad but true.

When the moment comes to explain to someone what IBD is, there is a second where I'm mentally debating between the 'real' answer and the 'nice' answer. The 'real' answer outlines, well, reality and what was happened to me, being gutted and all. The 'nice' answer is the 'Oh, it's not really a big deal, my bowels can be fussy sometimes'. Oh lies.

But how do you explain to someone the troublesome storm beating around in your abdomen when you look fine without causing them to tailspin into a reaction of pity?

And so when I was thinking about this the other day, it hit me - I'm like Superman. (Clarification: I wish I were, wouldn't that be nice!) We're all like the super-hero who is an ordinary kid, typically on a smaller side (think Tobey Maguire in Spiderman), and it's only in the darkness or night when we become our true selves. Not the become-the-massive-green-hulk, but the idea is that we look normal, we are (mostly) normal, but there is something different about us. What I love about my metaphor is that unlike other things I've heard, this is a positive way to describe us. We have super-hero courage and strength and passion about awareness and advocacy, so how are we not super-heroes?

In high school, I was the girl who was sick. The girl with the NG who was once asked if I snorted an iPod shuffle (which, to this day, I am not sure how that's anatomically plausible anyway), the girl who would vanish for long periods of time (aka in the hospital) and suddenly reappear (see, super-hero!), the girl who made it a habit to take ambulance rides from school to the local ER. When I came to college, I tried very hard to just be me - the person who is in love with Patrick Dempsey, likes to run, works in a preschool, and wants to get a PhD in Psychology. I am all of those things and the 'super-hero' part is my Crohn's and my ostomy, things underneath my clothes and inside of me that don't make me who I am but contribute to what my body is. You should never feel like you owe someone a confession of your diagnosis - because you're not your IBD, you're Sarah or Kate or Joey or Marcus.

And you're a super-hero.

Jennie

As I was driving from Nova Scotia to Boston for school, I tried to think of the first day of classes my junior year. I was struggling trying to remember, and then it came to me: I didn’t go to the first day of classes because my body decided the ER was a better place to be. Nothing like starting off the year on the wrong foot.

I can summarize the fall semester of my junior year in one word: awful. I had the classes I wanted to take, everything moved in and meticulously set up in my room, a growing contingent of friends to explore the city with. But luckily for me (irony never gets old), I was entrenched in constant mechanical ileum bowel obstructions and ended up spending 2/3rds of the semester slightly (or okay mostly) drugged and trying desperately to figure out how to get better. And as I write this and think back to that time, it makes my stomach sore and also makes me want to have someone playing a violin in the corner as I recount my sob story. But instead I’ll just say this - that was a semester to survive, not one to enjoy.

For a long time I thought that every new school year had an obligation to set loose a varying kind of havoc on my body. Every year was something a little different, a little more challenging, a little more tiring. And before this post turns into a sappy, soap-opera worthy story-line, let me say this: this year is going to be different.

I’m (mostly) fixed, having discovered the etiology of my mechanical bowel obstructions (who knew yoga could be so dangerous!) and am absolutely elated to say that I haven’t had an obstruction since December (minus my obstruction in April, but hey I ate about 7 apples so that was my fault). It makes a world of difference having my body back and being able to do what I want. As my boss this summer said, ‘planning is important, plans are useless’ - aka nothing goes according to plan, but learning to swing with the punches and expect issues is the trick. I’m not naive enough to think I’ll be completely honky-dorey the entire semester, or that things won’t be bumpy, but I’m ready for what’s to come.

Here’s to the new school year. Here’s to new challenges. Here’s to resiliency, perseverance, and courage. Here’s to making new friends. Here’s to learning. Here’s to hoping the most stressful event of the semester will be an exam. Here’s to my senior year. Here’s to getting back up when you fall. Here’s to scars that remind me where I’ve been. Here’s to health and happiness and hope.

Here we go.

Jennie

I hardly consider myself an outdoors girl, but for five days this summer, I volunteered as a summer camp counselor for twelve to thirteen year old girls. We roasted marshmallows, performed in a talent show, and competed in “Camp Olympics.” The campers, aged seven to seventeen, were as enthusiastic, active, loud, and curious as any of their peers at typical summer camp experiences around the country. Yet, Camp Oasis is not your typical summer camp experience. All eighty campers had Crohn’s Disease or Ulcerative Colitis. Although I’ve lived with Ulcerative Colitis since fourteen, I had not experienced Oasis, but I know firsthand the value of camaraderie among young patients and fell in love with friends’ descriptions of Oasis’ impact on young patients. I believe every child should experience camp, but camps that serve chronically ill kids provide them with especially extraordinary experiences. That first bite of a roasted marshmallow tastes just a little bit sweeter to a kid who’s been NPO or on a liquid diet. The kid whose medical chart outshines their personality on a regular basis shines just a little bit brighter on stage. For the kid who has more hospital bracelets than sports trophies, “Camp Olympics” means just a little bit more. We give the campers the reins at camp, and the medical staff stay in the background, and that’s a freedom every young IBD patient should experience. It’s impossible not to look around you at camp and feel crazy lucky, even in spite of the disease that brought us all to a tiny rural town in Missouri.

I’d heard from friends at other Oasis camps that the zip line is considered the defining Oasis activity, and since counselors are allowed and encouraged to participate in activities with the campers, this was an activity I was also eager to try, if for no other reason than to say that my first summer at Oasis included that defining zip line moment. I felt like a proud momma watching every camper in my group conquer that wall and the zip line, which made the blow all the stronger when I didn’t. For a few seconds, it bothered me; here, all my twelve-year-old campers had made it up while I had succumbed to the pain. After pepping them up for this the whole week and encouraging them not to give, I had given up. I felt as if I’d let those kids down somehow as a role model, in hindsight a misinterpretation of those words. I didn’t get that defining zip line moment, but the self-pity was short-lived because it was replaced by an ah-ha moment. Through all this reflection over the kids succeeding where I had fallen a bit short, I realized that somewhere during the week, I’d stopped thinking of them as sick. I’m not quite sure how to express the magnitude of this realization. For years, I refused to attend Camp Oasis because I considered it a camp for sick kids - and yet here I was, there in the middle of Missouri at so-called Camp Whiny Sick Kid, and the last words I’d have used to define those kids were whiny or sick. Even the two girls in our and the adjacent bunk who needed to leave for medical reasons were anything but whiny; not to perpetuate the ridiculous stereotype of sick kids as heroes, but those girls were tough. Like I said, I maybe felt sorry for myself not making it up that wall for about three and a half seconds, and then I was over it. My defining camp moment didn’t come on a zip line like I expected; it came on the ground beneath it. Not only had I pushed myself harder than ever before to hang on to a rock wall, but I had finally been able to push past a label I’d stuck to Oasis four years prior. I absolutely expected to look at these kids and see “kid on Prednisone” or “kid who had ostomy surgery,” but instead I saw them as just kids at camp and often forgot why we were all at Oasis at all. I didn't physically land in a harness in the middle of an open field - but mentally, I landed somewhere so much more personally significant.

I believe that’s the beauty and power of Oasis. It may be a specialty camp for IBD kids, but it’s so easy to forget why you’re even there. And once you leave, it’s hard to imagine not going back. The lessons I learned in those five days are innumerable, but perhaps the most significant was the reminder of the first piece of advice to come with my diagnosis: IBD, whether mild or severe, should never define a personality. I’m so thankful Camp Oasis is around to help the next generation of IBD kids learn that too - and remind some of us older kids of what we ought to remember.

I’ve never been a fan of toilet seat covers. This goes back to my earliest experiences. You know the flap that hangs over the ledge in the front that, I guess, is supposed to protect your equipment from the Petri dish of germs in and around the toilet? I always thought that part went in the BACK instead of the FRONT. Why? Because my experiences with poop consistency (consistency as in “firmness” not “uniformity”) and my poop blowing all over the place, I thought that the flap was an attempt to protect the integrity of the bowl. I was also young, naïve and stupid.

I generally do not use toilet seat covers. In the nastiest of Alcatraz Bathrooms, my procedures are as follows. First, I wipe the seat with TP. I’m not shy about TP usage for this purpose—this is not a time to show how “green” you are. I must protect my hands. Then, I do one of two things. Either I use or try to use (more on this in a moment) a toilet seat cover, or (most often) I use TP (folded over two or three times, depending on the level of nastiness), over the seat and hanging over the front of the toilet (like the seat cover flap).

When I say I “try” to use a toilet seat cover, well, toilet seat covers and the containers that dispense them are fraught with design flaws. I think that, truly, the crappiest (pun intended) of engineers are assigned to crummy projects such as this. About half the time, the seat cover rips just exiting the mounted dispenser. I used to think that I was pulling them out incorrectly, but I follow the up-down, down-up, in-out, out-in whatever instructions, and the thing STILL rips. And what the heck is up with style that is folded over twice, essentially in quarters? I find these on airplanes mostly, and I guess that the design was driven by space limitations. That thing comes out of the dispenser just fine (usually), but unfolding the thing? I have nothing but scraps in my hands.

I cannot tell you the number of crumpled toilet seat covers I have thrown away, flushed or (forgive me) left orphaned on the floor behind an Alcatraz Bathroom toilet.

The ONLY good news here is that the most abominable of Alcatraz Bathrooms usually have industrial flush capabilities so that stopping up the toilet with all the extra paper (both unwiped TP and seat covers) is not a common occurrence.

I have to say, in cleaner Alcatraz Bathrooms, like at a friend’s house or at work, for example, I don’t usually cover the seat. What kills me, though, is that there is ALWAYS, ALWAYS one stray hair on the seat. Without fail. What to do about stray hairs? Listen, it’s a dog-eat-dog world out there, and sometimes you’re wearing Milk Bone underpants (a nod to modern philosopher Norm Peterson). God help me, sometimes I just sit on them. I’m not proud of this, but we all eat plenty of rodent hairs in our food so a stray hair on the seat can’t hurt. Right?

And you kids out there, just to be clear—you can’t get pregnant from sitting on a toilet seat. Tinkerbell—you CAN get pregnant by being alone with a boy for over three minutes. That’s why your dad has to come with you on all future dates.