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.

This summer’s family vacation was a trip to Disney World!! I had an awesome time. I watched my sister ride Mount Everest roller-coaster seven times.  I got to ride some rides myself;  my favorite was the new Star Wars ride.  The rides are good but the thing that stuck in my mind the most about the trip was an experience I had during one of the meals.

My parents bought a meal plan for us while we were there and this allowed us to enter into the Disney “system” that I had some food concerns.  This was cool because it meant the chef came out to our table for every sit-down meal we had, to talk to me about what foods I could eat. There was one particular chef at an Italian restaurant that we ate at on the last day that I really liked. All of the chefs before him, at other restaurants, were great and very pleasant, but they all seemed preoccupied with the food that they had left in the kitchen. This one chef was different – when he came to our table he took out a pad of paper and wrote down what my dietary needs were as we talked to him. Maybe it was his manner, or his attention to detail, but somehow he made me feel like I was his one and only concern at the time.

This experience confirmed in my mind something I learned from my experiences at Children’s Hospital in Cincinnati; it is the little things that matter; it is the little things that make or break a patient’s experience.

Last summer, at the same time as our family vacation this summer, I was in the hospital getting ready for resection surgery. One of the little things that I remember the most from that “vacation” was meeting the surgeon for the first time. My surgeon had a New York Yankees lanyard with his ID on it. I instantly could relate with him because I had something outside of my medical care that I could talk to him about – not that I am a Yankees fan; I am a Toronto Blue Jays fan so that made the conversations even more interesting. It is that personal touch, that relating to the person that was caring for me, that made a difference.

In a similar experience last year, I have a friend who on his first appointment when he met his new doctor, talked to that new doctor about Harry Potter for half of his appointment.  The  doctor was wearing a Gryffindor lanyard. I know another lanyard story; I am convinced lanyards are magical! The magic is in the conversation they bring.

It is the little things that count.  From food to lanyards or chefs to doctors ...  it is these little things that patients remember and make all the difference in the world to the overall experience.  Whether you are going through the trauma of a hospital stay or the trauma of an IBD patient trying to eat out, it is these simple things that make the patient see the caregiver as a person; someone that cares about you and even a little less scary.

“But I took my medicine!”

I hear this down the hall from a patient room. I’ve heard this so many times in my work as a psychologist that I immediately begin to assume what is going on in the room. In my mind I imagine the child down the hall is probably being told that labs came back showing little to no medication in her system, even though she’s on a considerable dose for a serious problem. She has been admitted and she’s in bad shape; in lots of pain. The medicine they wanted her to take could help her body get better, or at least keep her problem from getting worse. And she is adamant she has been taking it, perhaps also implying she has been taking it every time she was supposed to take it. And… the doctor or nurse talking to her doesn’t think she is being completely honest. They shake their heads: “But honey, numbers don’t lie.” She then looks to her mother for support but finds, instead, a disapproving look.

Awesome LOOP blogger alex8799 recently submitted 'Zip Lines, PICC lines and Tofu: Facing the Challenge' as a guest-post on The Gutsy Generation, an initiative by the CCFC YAC (that's code for the Crohn's & Colitis Foundation of Canada Youth Advisory Council).

Alex had also shared this post with us here at LOOP, but instead of just re-posting it I wanted to take the opportunity to send you over to The Gutsy Generation.  It's a great blog!  The contributors are young people, just like Alex, who live with IBD and have decided to share their stories with the world.  They all definitely get two enthusiastic thumbs up from me!

[slideshow]Two and a half months ago, I was in a hospital bed weeping. Surgery hadn’t gone as planned and suddenly the horrific semester I had just overcome seemed to loom before me. My heart felt like it had been split open, my dream from the summer of going to Peru seemed torn apart. Life was unfair and overwhelming and painful.

But if there’s anything I’ve learned, if you wait a few minutes, take in a big breath, and remember who you are, things become a little more possible.

So now, as I sit here writing this, I will try my very best to relay the amazement, wonder, joy, and peace of my recent trip to Peru. Warning: there truly are no words, so whichever I find will not do it justice.

First of all, the people were wonderful. There were ten of us including myself and the group was comfortable and hilarious, comforting and encouraging. We sang songs and joked and had serious times when we related stories of pain and discouragement. It was a group of people who had every reason to be bitter and angry and discontent with the world, but somehow there was so much joy.

We were broken in easily to the challenge that was steeped in front of us. After a couple of days of touring around Cusco, wrinkling noses at the cooked guinea pig, and grinning over adorable Peruvian children, we donned our backpacks (which seemed to get heavier everyday!) and took out our trekking poles. I’ve never been to South America before, but the sheer vastness of mountains and the glaciers standing triumphantly in the background, the laziness of the cows grazing in the fields, the rumbling of the river as it fell over itself - all of these sights and sounds I tried to commit to memory so I would never forget. It was, in a word, beautiful.

There are too many details to try to write down, too many things I will not be able to aptly describe. On the third - and hardest - day, we climbed to the peak (4200 m) to ‘Dead Woman’s Pass’. After climbing the ultimate StairMaster (thank you Incans), I climbed to the top of a big rock with a fellow young trekker. We looked down at the stairs, winding in the distance, saw the Incan irrigation chevrons carved into the landscape, and cheered for the trekkers behind us to make it to the top. There aren’t words - it was gorgeous and glorious and empowering and exciting. We sat there and breathed, inhaling and exhaling, unable to find words to articulate how our hearts were singing.

Even with the chilly nights wrapped in sleeping bags and the midnight journey to the bathroom tent with only a headlight, the trek came to an end way, way, way too fast. We reached the Sun Gate and took countless pictures, so proud of one another and the journey we had completed. I looked down at Machu Picchu, the postcard picture I had seen online so many times, and couldn’t mesh the real and surreal elements of the moment. I had made it. I was on the top of the world. And as happy and proud as I was, my heart ached that the trip was nearing an end and I would be leaving the people I had come to care about so dearly.

Besides crying as I left Peru, the most vivid memory I have at the end of the trip was the bus ride from the train back to Cusco. It was dark and everyone was tired and plugged into their iPods or falling asleep. The bus drove along, the lights of the surrounding towns twinkling. I was listening to my music, grinning at the joy of the occasional person who would break out into song or the laughter that would warm the bus. I closed my eyes so tight and promised to remember what it felt like to be there and wished the bus ride would last forever. If I close my eyes now and listen to my heartbeat I can still feel the sway of the bus and the hum of laughter and the peace that blanketed us all.

It was the best experience of my life, though I wish I could say that more eloquently. I am so happy to have been healthy enough to go, but now sad that it is over. But I know that there will be new challenges, new mountains, and new friends.

And when I get nostalgic and wish I was back on the trail, hiking steps and laughing, I’ll look at my pictures and smile, and close my eyes and be back in the bus, happy and whole and healthy.

Jennie

For a teenager with IBD, life has its “ups” and “downs” like it does for everyone else, but I bet the “ups” are better for me than others – or maybe I just appreciate them more. With awesome “ups” … the “downs” become a little more tolerable and no matter what, the “ups” and “downs” and how you handle them is what shapes your life.  Recently I had a big “up” - not a big turning point in my life, but it certainly reaffirmed a couple of my life ambitions - the first being to set goals and the second, to make my mark on the world.

The second to last weekend in June, I spent four days at the Hugh O’Brien Leadership seminar (HOBY). It was a great experience, a lot of fun; I met new friends, and learned the principles of good leadership. Leadership is important to a community, to an organization, to me … to everything really. At the HOBY seminar, we learned about the different areas where leadership can be applied and different elements that define a good leader. HOBY taught me a thing or two about my own leadership development – they suggested in the seminar that in order to exemplify good personal leadership you must first know yourself.

It took me some time to realize who I was as a person and what I have come to know as my goal in life.  Maybe this is just part of growing up, but I have to wonder if the ups and downs of having Crohn’s disease have not played a part in that process.  Over the past several years, things have become very clear for me - my goal in life is to help others - using my experience and my disease to help others through their “downs”. For the longest time, I denied the fact that I had Crohn’s; I did not want to be different and just wanted to fit in – I guess I was in denial. However, over the past few years, with the support of friends and family, living with Crohn’s has helped me discover myself and I have turned what some might consider my weakness, into my strength.

My goal in life is to become a gastroenterologist and to use my experience as a patient to better my patients’ experiences. My life ambition includes two important ideas that we covered in the HOBY seminar last weekend. The first is to always make SMART goals. Without goals, life has no direction and someone without goals will very often not accomplish anything. The second of the two topics we discussed at HOBY was the more important one in my mind - that is to make your mark on the world by changing and inspiring others lives.

My plan: to touch the lives of as many patients as I can in my lifetime.

[Editors note: read more posts by alex8799 in his archive]

Remember Alex? Read Alex's first post to LOOP here.

My life in one word (or acronym)…. IBD. I was diagnosed with Crohn’s disease at age nine. I am currently a sophomore at Milford High School and 16 years old. My life with Crohn’s disease was summed up one day by my school nurse. That day I came in to the nurse’s office and I broke down. I was in the middle of a month or so – what seemed like an endless period of having stomach cramps for no apparent reason. I started crying and in that conversation the nurse had this to say about IBD, “You’re allowed to say it sucks.” I thought that summed up the low points of my life and other patients’ lives with Crohn’s disease pretty well.

In my seven years with Crohn’s, I have gone through all the medications used to treat kids and have not found one that works. I have had several surgeries, the biggest of which was a resection of my ilium this past August. I have definitely had my ups and downs. But doesn’t everybody?

Even through the lowest downs, there is always an up; the silver lining that lights up your day. For me, I found that silver lining through Crohn’s disease. I guess Kelly Clarkson doesn’t lie when she says “What doesn’t kill you makes you stronger.” My silver lining is advocacy for a better patient experience. I get my inspiration, my optimism and my might from the patients that I see who have thrived under the weight of diseases worse than mine.

Crohn’s has turned into my life and my strength. It is the reason I am down, but it is also the reason I get right back up again. I have made new friends from Crohn’s. Through Crohn’s disease, I have learned who I can count on, to support me when I fall. It has introduced me to some of the most wonderful patients and people I will ever know. I have met patients facing bigger obstacles than me and living their lives giving back to others; living like everyday could be their last. Through Crohn’s disease, I have found my future and my life goal.

Life will always be full of obstacles but the way you deal with them is what determines whether the roadblock will be turned to a strength or a weakness.

Crohn’s is my life and my strength.

Optimism is a wonderful thing that the world needs to have more of. Dictionary.com defines optimism as “a disposition or tendency to look on the more favorable side of events or conditions and to expect the most favorable outcome” or “the belief that good ultimately predominates over evil in the world.” Optimism is what pulls a person through adversity; gives a person hope; and makes patients heroes that serve as role models for other patients.

My six-year experience with Crohn’s Disease has included the bottom up approach in finding medications and without all that much success; hospitalizations; resection surgeries; alternative ways of finding nutrition, and lots of pain. Some may think that it’s hard to be optimistic with all of this, but I have two choices.  I guess I could wallow in self-pity or face it head on, and try to stay optimistic.  The latter is my choice; I think a better path to follow and it sure makes it easier to keep up the fight.

Some of my optimism is natural or part of my personality I guess.  Part of it is telling myself that I can beat this thing and that maybe someday they will find a cure; in fact maybe I will be a Doctor someday and be part of that research.  Friends and family certainly help, and maybe the odd distraction (like music, or a good movie …).  For the most part I guess I am optimistic because I refuse to give up hope. I believe in staying strong.  In my opinion, keep looking beyond the day-to-day challenges and hoping tomorrow will be a bit better. Without hope, there is no way of getting through the struggle.

I also get some of my optimism from others; specifically from other patients.  Seeing what others go through makes my battle look small. These patients serve as my heroes and role models – probably because I see what they are going through and certainly can appreciate it when I compare their condition to mine. The biggest hero in my life today does not have IBD; she has Cystic Fibrosis. She has had to put university on hold while she waits for a double lung transplant. She goes in and out of the hospital for weeks at a time and never gives up hope. She is optimistic and in the face of hard times she devotes her time to other patients. What is inspiring is her ongoing optimism; someday, I wish that others would look at me and think the same thing – that good ultimately predominates over evil in the world.

When my daughters were younger, they loved The Little Mermaid, or more specifically the Disney version, with beautiful Ariel, crazy-scary Ursula and, most saliently, her two evil, ever-present eels, Flotsam and Jetsam. In Disney's tale they are menacing, conniving, willing to terrorize beautiful and sweet creatures of the sea. Our girls used to squeal and scream, grabbing my wife and me for safety whenever Flotsam and Jetsam showed up on screen.

Much in the same way ImproveCareNow gets excited for World IBD Day (May 19th) and Crohn's & Colitis Awareness Week (December 1 -7), the National Council on Skin Cancer Prevention is excited about Don't Fry Day - which is today, the Friday before Memorial Day Weekend.  A day that is set aside as time to raise awareness and hopefully prevent skin cancer.