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Years ago, a doctor asked me to draw a pie-chart and shade in how much Crohn’s affected my life. I remember hesitating and then looked up and said it was impossible. There was no way to decide where my life and my Crohn’s didn’t walk hand-in-hand, they were as intertwined as written words on paper. Alone it might just be blank pages and a pen, but together they make a story.
I had just turned 12 when I was diagnosed with Crohn’s disease. This is what I remember most about that time: being scared, confused, alone, angry, lost, lonely, and feeling robbed. I didn’t know what Crohn’s was before my diagnosis and thought that it meant taking a pill and not eating broccoli. I did not want to be sick, in fact I refused it, and wished that I could rewind the past few months and never be diagnosed.
But a lot can happen in 9 years, and indeed a lot has happened. I tried every medication to little avail, spent copious amounts of time in the hospital away from school and friends, dealt with people’s ignorance about bowel disease, and acquired a medical vocabulary. I’ve lost count of the PICC scars on my arms and the medications I took. I have boxes of medical ID bracelets and needle caps and finger puppets (the reward for a blood-draw at my pediatric hospital). And even though it’s an enviable collection, what I am most proud of is being involved in awareness and advocacy through Crohn’s and Colitis Foundation of Canada (CCFC) and our Youth Advisory Council (YAC) here.
When I was applying to college, people who didn’t know me well would timidly warn me, “Oh you should stay at home for school. You’re sick”. I absolutely hate being told what I cannot do, because no one else can tell me what I’m incapable of. I left Nova Scotia for Boston University, where I’ll be a senior in the fall. I’m studying Psychology and plan to apply for a clinical PhD in pediatric health psychology in the winter. It’s a mouthful, but I want to be a pediatric psychologist for chronically ill children.
After my freshman year at BU, I became extremely sick during the summer. I had spent so long feeling unwell that it seemed ordinary to me. My GI scoped me and saw the inflammation in my colon was severe and the bowel had begun to die. I was so relieved to hear the news because it meant that something drastic would finally be done. I chose to have a proctocolectomy (aka everything after the small intestine is gone) and a permanent ileostomy. I love my bag so very much, it was the right choice for me and my disease, and wouldn’t trade it for the world’s best working colon.
I think that one of the hardest parts about living with IBD is understanding that it’s chronic. I don’t think we ever have a solid understanding of the word since there is virtually nothing in our lives that is stays the same forever. We grow, we move away, we meet new friends, we watch new television shows. Even though it’s been almost a decade of being an IBDer, there are still mornings when I remember my ostomy and can’t believe what’s happened to my body.
I was recently in Peru to hike Machu Picchu to raise awareness about IBD and ostomies. People asked me if it were possible go back and take away my Crohn’s if I would. I said no, because I wouldn’t trade the clarity that living with IBD has given me on my life and what I want to do for anything. I am not my IBD, I’m just a girl who likes to run, loves Patrick Dempsey, and could probably win a banana-eating contest. And everyday I do my best to live by the words I wrote to myself after being diagnosed, “You hope to rise above your disease and excel”.
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.
I was diagnosed with Crohn’s disease at age 7 and have grown up to become both personally and professionally invested in the pediatric inflammatory bowel disease (IBD) population. Through my interest in improving the lives of these patients and their families, I became involved with the C3N Project and ImproveCareNow primarily as the founding chair of the Patient Advisory Council, which serves the initiatives of both projects.
I currently live in Cambridge, MA having recently earned my M.A. in child development from Tufts University. As I continue my collaborative work with the C3N Project and ImproveCareNow, I hope to eventually earn my PhD in clinical psychology and continue research and program development efforts that will help improve the accessibility of social support and overall health-related quality of life for all patients with IBD. I have a special interest in utilizing social technologies and social media platforms to do so because my own avid use of these tools has helped me to broaden my own patient network beyond friends I had met through experiences earlier on in life through pediatric support groups and Camp Oasis.
My own experience at these support groups and the Crohn’s and Colitis Foundation of America’s Camp Oasis program initially inspired me to dedicate my higher education and career goals to young patients with IBD, and I hope that my insights and unique perspective from that of a patient and a researcher helps LOOP readers to better understand how ImproveCareNow is striving to make a difference from the top down.
From the C3N website comes a great quote:
“people who lack the power to shape their life course in significant ways are less likely to believe they can take control of their health, and thus less likely to engage in health-promoting behaviors” (Bandura, 1996).
My mother said that when I was in first grade she knew I would be a psychologist.
I came home from school one day, excited to have my first grade pictures! Remember those big sheets that you had to painstakingly cut into little squares? I was proud of my pictures and couldn’t wait to pass them out.
Okay, so fast forward with me 19 years. I have been in college five years… switched majors twice, taken two pre-professional tests, and have landed a spot in graduate school – in clinical psychology. My mother takes my face in her hands, smiles, and says “I really always knew this was what you would do. Remember those first grade pictures?” She goes to her dresser, pulls out a leather wallet, and removes a picture from it. It is of me, at age 6, smiling into the camera. “Flip it over,” she says. I turn over the picture and, there on the back, in big purple magic marker letters are the words “If you’re feeling blue, call me – ________.” I had given my phone number, with that message, to all my friends and many adult friends of our family, in first grade.
I guess I have loved and felt moved to try to help hurting people for a long time. I came to this type of work, helping children and families touched by chronic medical problems and the difficulties they can cause, through my work in graduate school and then, later, in consultation and intervention work through my developing practice. One of my favorite things is to help children discover the strengths and abilities they already have, and help them and their families put those strengths to work improving other aspects of their lives. Children with IBD aren’t broken, nor do they need to feel diminished in their ability to live a “normal life.” In my experience nobody lives a normal life; we all live extraordinary lives with both difficult challenges and triumphant successes. What I love most about helping children with chronic illness, though, is that regardless of their at times significant traumas and daily problems, they’re still trying to find something to smile about.
There is a joke about our outlook in difficult situations. Two children whose parents have volunteered them for research are taken into separate rooms. The researcher tells his students,”These two children are helping us test whether optimism and pessimism are permanent attitudes in people.” The children are then placed in rooms. The more negative child is placed in a room full of beautiful toys, the more positive child in a room full of horse manure. An hour later the researchers return. The room once full of beautiful playthings now has broken toy debris and a child, sullen, sits in the middle of the room, crying. In the other room horse manure is flying everywhere as a little boy moves through it, eyes open and full of wonder. The lead researcher, bewildered, opens the door and says “Billy? What are you doing?” To which the boy replies, “I just knew that with all this poop, there must be a pony in here somewhere!”
I believe that, although both optimism and pessimism can be persistent, pessimism doesn’t have to be permanent. Children who feel hurt or scared can feel hopeful again if we give them support and help them find and use their own tools. Our patients with IBD, and their families, are amazing and strong, although they don’t always feel like it. They need and deserve community, hope, and the realization that together, they can accomplish great things and have fun along the way. I believe in them, I believe in the benefits of programs like ImproveCareNow, and I’m thrilled to be a part of this community.