ImproveCareNow sami_kennedy


The Great Zip Line Misadventure of 2012

 

 

 

 

 

 

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.


 

 

 


Miralaughs

My college roomie does not have Inflammatory Bowel Disease. Yet, I’m convinced that if anyone stole my phone and read our daily text message exchanges, they would wholeheartedly believe that we both have a strange obsession with poop. We talk about poop a lot. More specifically, we make poop jokes a lot. Usually inappropriate poop jokes that I wouldn’t even repeat here. That’s not too much of a tragedy for you, since like most inside jokes between friends, you probably wouldn’t find them funny. Really, our sense of poop-humor is akin to the average six year old’s, but I wouldn’t have it any other way. It’s an incredible feeling to receive support from a friend without IBD. It’s even more incredible to laugh about poop with that friend. That’s the sign of a true ally, and it’s rare to find those outside of the IBD community. To get back to the recurring theme here, I’m crazy lucky.

 

Anyway, I started using the stool softener Miralax today to help with some IBD-related constipation. I texted from the parking lot outside the CVS: “Some have a closet full of beer at college. We’ll have a closet full of Miralax.”

 

A year ago, I sat at home crying and desperately searching the Internet for advice as I packed for my freshman year of college. I had a flare that wouldn’t let up and would need to use nightly enemas in my dorm room. I was convinced my roommate would think me a freak. What eighteen year old admits to using an enema? Who even uses an enema every night? For someone who claimed to be okay with her IBD, I really let my fear of rejection kick my rationality out the window. I practiced holding in an enema while sprinting from my bathroom to my bed. I bought a huge box to hide the prescription boxes. If I had known that over a year later, I’d still be using enemas nightly, I would have absolutely freaked.

 

Then, I got to college. I met my incredible friends. I realized I had blown the whole situation way out of proportion over the summer. When I first confided to my best friend that I use enemas, she barely blinked an eyelash. I was shocked. After all that panic, it turned out to be not a huge deal at all. A few weeks later, we watched “Dracula: Dead and Loving It” - which is a terribly funny movie I totally recommend that also happens to poke lots of fun at enemas (as a supposed cure for vampirism) - and I can guarantee that movie would not have been nearly as funny for us if I hadn’t (quite literally) let my enemas out of the box.

 

A year ago, I couldn’t have sent that text from outside CVS. I would have been terrified to bring packets of Miralax into my college dining hall. This year, I’m not even phased. I know it won’t be a big deal to her or any of my friends. In fact, I know there’s a greater chance of someone at the table making a joke over the white powder than anyone giving me a funny look for it. It’s just the way it is. My friends know me, know I have IBD, and know that it’s a serious disease that I’m okay with taking lightly sometimes. I am in a wonderful place that I wish was available to every IBD patient.

 

UC and Crohn’s are serious diseases. Chronic illness sucks and shouldn’t be taken lightly. That said, I think humor can make a world of difference in how a patient copes with their disease. I know I find it liberating to have a go at the disease that makes me go. I think nocolon33’s hilarious Alcatraz bathroom series is a great example of this. Humor is just another way I fight back against my disease. It may have my colon, but it’s got nothing on my spirit.


Open Your Eyes

In my last post, I mentioned the isolation I felt after diagnosis. I kept my disease and my emotions private. At the time, I didn’t think this was my choice. I felt bullied into silence by my disease. It was so embarrassing. If I had to be sick, why couldn’t I have a normal disease? I thought everyone on the Internet was a weirdo (who would be crazy enough to admit they had IBD online!?) and just wished there was someone nearby who knew UC stood for more than “you see.” I didn’t only feel alone, I was so remarkably confident that I was alone. In retrospect, I wasn’t really trying. I didn’t consider Camp Oasis, or as I preferred to mockingly call it, Camp Whiny Sick Kid (stop, don't listen to my bitter little self, not at all accurate!). I wouldn’t have admitted it, but I knew there were support groups out there. It was my choice not to look into them.

In 2010, I was a Junior in high school, getting over my second flare. I was still as stubborn as my immune system. I wouldn’t have mentioned my disease at school in a million years. When Crohn’s disease came up in French class, it wasn’t from my lips - which made it all the more surprising!

It turns out that all along, a boy just a year older than myself at school had Crohn’s. His family was very active in the IBD community actually. I just never opened my eyes wide enough to realize. I passed him in the hallway at least twice a day. I didn’t speak up that day, though I could see my teacher who knew about my IBD eyeing me from her desk. I wasn’t ready, but this was a defining moment for me. I couldn’t believe it! I ran through the "what if’s" in my mind. How could I have missed this in a school of only 400 students? Would the past two years have sucked less if I had spoken out and connected with him?

Here’s what’s even more surprising, though: I still didn’t reach out to him. Just a few months ago, he reached out to me on Facebook, and I pretended I hadn’t known. I didn’t make the first move. Why?

Taking the first step is scary. Admitting to others that you have a disease is difficult because it forces you to admit your disease to yourself. I ran for two years - because I was scared of a label. I didn’t realize yet that I could choose my label. By not coming to terms with my disease, I was letting it label me - as a girl controlled by her disease. Now, I label my disease - as something that may challenge but will not trap me again.

Now that I’m actively involved in the IBD community, I love meeting other teens with UC and Crohn’s. I love sharing experiences, and I love how we often inspire each other. I wish I hadn’t waited so long to take that first step.

That first step is scary, but believe me, it’s not nearly as scary as fighting IBD alone.

Open your eyes. Look around you. Someone to understand how you feel might be closer than you think. You won’t know until you try.


I've been lucky.

It first occurred to me while organizing the Big Blue Box, a jumbled collection of boxes, bottles, and doctors’ notes. A friend walked into my dorm room as I transferred that week’s supply of pills into my backpack. She already understood the basics of IBD, but I took the opportunity to introduce her to my crew of prescription superheroes.

 

I was diagnosed with Ulcerative Colitis in 2008 at fourteen. It took just one month. I got lucky. I woke up from my first set of scopes to find out I’d won a ride to the inpatient floor. I was told to expect at least a week-long sleepover. Instead, my body ate up the Prednisone like candy, and I managed to break out after three days. Lucky for the second time.

 

My first superhero was Asacol. It gave me a sweet two months of remission. I flared again in 2009. This was my worst IBD flare to date, no doubt, but again I got lucky. I avoided an inpatient stay. I responded to Prednisone again. The rash on my skin that threatened to take my beloved Asacol away turned out to be a benign condition. I won’t deny the facts: the pain was unbearable at times, I felt very isolated in school, and I re-flared halfway through my Prednisone taper. I still think myself lucky.

 

I met a new superhero: 6mp. My parents and I feared it at first. It had the dreaded C word attached to its reputation. It came with an abundance of blood tests and risks. It also saved my colon. I’ve had very few side effects, and none of them significant. I expected nausea or worse to come out and, bam, hit me in the face, but they didn’t. Remission finally stuck around. I’ve had no significant disease activity since 2009.

 

Through it all, IBD was my secret. Poop isn’t really a comfortable topic of conversation in high school. I hated how my disease had affected my high school social life. I decided I needed to reach an emotional remission to match my physical remission: I would control how my disease affected my life, not vice versa. I joined an online support group. I’ve met and bonded with other teens with IBD. I’m a member of the ImproveCareNow patient advisory council. This year, I’ll be a volunteer counselor at CCFA Camp Oasis. I’ve found my voice, or at least I’m trying.

 

I have friends without colons. I have friends that dream of remission. I have friends that have dietary restrictions I don’t have or feeding tubes. I don’t pity them, but I do consider myself lucky. Every patient’s story is different, and none of us chose our story ahead of time. We didn’t get to preview our particular path through the disease and approve or veto it. I don’t know why my path has been less bumpy than my friends’. It makes me sad. If I could, I would share my remission with them. I can’t explain why things are the way they are, so I just call myself lucky.

 

That day in my dorm room with the Big Blue Box, all of this ran through my mind.

 

“This just makes me feel so bad for you,” she said finally.

 

The story rushed through my head from the beginning - where I started, how far I’ve come. My story is my own, but my passion for sharing it is about so much more than me. Neither of us spoke for a few seconds.

 

“I’m okay,” I say. It’s true. I’ve been lucky.


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