First and Last

Posted on 13 May 2013 by jendavid91

There are evenings like tonight that I am sure I will remember in thirty years. There’s nothing remarkable about tonight, just a quiet evening at home, only it entails being forced to watch the school’s football field undergo a Cinderella transformation into my way-too-soon college graduation. And as such, I am overcome with a simultaneous sense of relief and panic – causing me to nearly freak out at the sight of the stage being built with a near “WAIT I AM NOT READY TO LEAVE”. But alas, no one would hear me, so I will spare my neighbors the screaming.

Graduating college is funny – you spend so long thinking about what school to choose, and then what classes to choose, what dorms to live in, and which textbooks to buy or rent. I remember matriculation four years ago, sitting in the crowd of my new classmates, a pit in my stomach trying to quell my intestines from causing a scene. To think about how sick I have been these past few years – the sheer number of doctors’ appointments, pills swallowed, IV attempts, hospitalizations, scars now icing my abdomen, and an ostomy bag carefully tucked into my dress, it seems unbelievable. But I want to be clear and direct – college was an amazing experience, and while I perhaps had far from the typical four-year journey, I have so loved my time at school and done some wonderful things.

When I was graduating high school, people who didn’t know me well cautioned me with wrinkled noses that I should stay home, I was – after all – sick, and why would I want to go to school in another country? My parents, undaunted by my persistence in school choice, willingly sent me on my way (okay, not so willingly when it came to saying goodbye, but that I’m guessing is a normative going-off-to-college right of passage). I found friends who saw beyond my disease, who have laughed with me, brought me extra clothes in the hospital, met my doctors, and made cupcakes in my kitchen. I have done community service and had a job serving under-resourced preschools all four years. I have been doing research since freshman year, did a senior thesis and got a grant, and am being awarded a Psychology Research award at graduation. I’m graduating with honors. I have perfected my Patrick Dempsey addiction, finally understood how to use Tumblr, hiked Machu Picchu, ran a half-marathon, and never pulled an all-nighter. And just before graduating and really entering the ‘real’ world (whatever that actually means), I even went on a first date – make that second, compliments of vegan ice cream.

The point to the rambling – I went to college. I went to college with Crohn’s. I went to college and was sick. I went to college and had surgeries. But, I went to college. I went to college and did it in four years and am graduating. I did it. I did not do it alone, but I did it. And so can you or your child or your best friend or that new patient you had in clinic today who was frightened and sick.

As an English minor, I took a class this semester that centered around literary non-fiction. The final class project was to write an essay of our own – mine was a braided essay about the history of Crohn’s (look it up, the story is fascinating!) and my own personal experiences. I even interviewed my GI for the piece. After being undecided about the title for literally weeks on end, my roommates finally prompted me to accept the working title of ‘Not Where I Thought I Would Be’ – and they, as usual, were right. At one part in the piece, I wrote that my GI understands that even though I may be broken, I am not breakable. I sent him the essay, which he so kindly read, and sent me an email response. “I would dispute one thing,” he wrote. “You are not broken. You are whole.” And while the thought was enough to leave a permanent grin on my face and make me feel incredibly lucky and honored to have such a compassionate doctor, it made me think – he’s right. I am whole.

In pediatric chronic illness, the focus is often on what’s broken. Your ESR is too high, you don’t like taking injections, you miss school to see the doctor, band-aids dot your arms to remind you where blood was taken. There are pictures of your gut, all twisted and inflamed, the pharmacist knows you by name, your medical chart has several volumes. But we forget to remind ourselves of something really important – we’re still kids, we’re still growing, we’re still dreaming. Our bodies may be in need of support, but our souls and spirits and whole. Be it going to college or anything else, having a chronic illness is only part of the equation.

If the last few weeks have proved anything to me, it’s that life is always happening – even if it means my college graduation will be here sooner than I want. There are still so many firsts in store for me, so many exciting things ahead, and yes, enough challenges (both health-related and other) to keep me busy. Perhaps it’s not where I thought I would be, but to be honest, I’m pretty darn happy I ended up right where I belonged.

Jennie

All or Nothing

Posted on 8 April 2013 by jendavid91

This semester alone, I have heard the phase “all or nothing” easily a gazillion times. Okay, I might be exaggerating here, but what I’m trying to say is that my psychology classes have discussed – repeatedly, at length each time – the ‘danger’ in “all or nothing” thinking. And it’s very true, because things are never black or white, things are not all or nothing. It’s not as easy as saying that someone is sick or healthy, there are grey areas in the middle, that slick slide you find yourself on traveling from one side to the other.

I hear my professors say this – I have proof of this scrawled in my doctor-worthy handwriting – and yet, I watch them crash through the glass walls they just built. Today in a class, a guest lecturer was talking about chronic pain. I know the guest lecturer meant well and he was in truth ultimately very determined to make a difference for those living with chronic pain.

But – some rules of thumb for doctors/parents/anyone reading this: not everyone who will deal with chronic pain/illness is anxious or depressed. Everyone (illness or otherwise) will deal with anxious and depressed moments, absolutely, but that does not mean they present with clinical psychopathology or that it is the heart of the problem.

One of the points this lecturer made was to help encourage positive thinking, active lifestyles, and a sense of control. So here’s an important note – if you want patients to have positive thinking, the doctor has to be positive with them, if you want patients to have a sense of control (and better yet, not just a sense but actual control), then a doctor has to be willing to share. It’s not all or nothing, it’s not you versus me, it’s us, here together – the ‘chronic’ should be a hint that there’s a plethora of time together. So use it wisely.

With each passing lecture, the urge to stand on my chair and shout (no, not ‘Captain my captain’, though that would be pretty awesome) “Hey you, listen, I’m a patient and I disagree. You can’t judge me or make blanket statements about me and all patients because you don’t know me.” This might cause massive disruption to the class and/or result in a stern conversation about being adults and not interrupting others when they’re speaking. But, like every kid knows, if you don’t have anything nice to say, you shouldn’t say it at all.

Sometimes I think people forget that patients are not lab rats. We’re not a separate population, smushed somewhere between children and adults. It’s like wearing one of those really itchy and constricting outfits for a family function and all you want to do is rip it off, but that would be impolite and people might stare so you smile tightly and keep your mouth closed. It is so polarizing to say people can only be a patient or a doctor, no in-between space, or shared community or feelings or beliefs. One or the other. All or nothing.

So I will stand up metaphorically on my chair (though, in reality, this involves me typing passionately at my computer) and declare that I am not just a patient, it is not black or white, not every person with a medical issue experiences anxiety or depression or is incapacitated crying ‘why me’ in a corner with a sappy violin playing in the background. Most of us are strong and capable and fighting – we’re advocates and whole, real, amazing people. We are every color imaginable, because black and white is boring, we are everything because to be all or nothing is belittling and untrue. We are loud, and we will never be quiet.

Jennie

Personal experience

Posted on 4 December 2012 by jillplev

[editor's note: Jill shared this post on her personal blog in honor of mentoring and #ibdweek.]

The other day I was listening to a couple of physicians discussing a patient with IBD..

“He’s been on every medicine, and he says the Remicade is making his psoriasis almost unbearable.. I don’t know what to do because the Remicade is helping his GI symptoms a ton. Maybe Humira or Cimzia won’t make his GI symptoms that bad..”

I interjected at this point and said, “It’ll still affect his psoriasis,” at which point the physician replied with: “How do you know that?”

“Personal experience.”

And with that he folded his arms and leaned back in his chair and said, “Huh.”

..the moral of the story being that physicians may not place quite as much stake in personal experience as they do science and medicine. However, patient communities thrive on sharing their stories and benefiting from each others trials and triumphs.

The C3N Project and ImproveCareNow want to make it even easier for patients to access this kind of social support through developing a mentoring program where kids and teens with inflammatory bowel disease can educate one another, where older veterans of Crohn’s disease and UC can help newly diagnosed patients as their peers.

This intervention is in it’s infancy, and we need patient input. The program is being implemented at Cincinnati Children’s Hospital and Nationwide Children’s Hospital first – CCHMC is testing out a group-based program while Nationwide will be piloting a more one-on-one model. With the collaborative’s resources, we’ll be able to develop a mentoring model that will serve all 40+ ImproveCareNow centers and beyond!

Happy IBD Awareness Week everyone, and remember to stay tuned for daily posts through the week..

Is awareness enough?

Posted on 4 December 2012 by jillplev

Jill Plevinsky | Patient Advisory Council Chair

I’ve been raising awareness for Crohn’s disease and ulcerative colitis ever since I can remember through fundraising, speaking engagements, social media, and more recently, academia. But always in the back of my head, I’ve wondered: is awareness enough?

Don’t get me wrong, I definitely think it’s a huge piece of the puzzle, but there are so many other things that we can do as patients to improve the lives of those with IBD while doctors and researchers search for a cure, and that’s what this week is about to me. There’s so much we can do.. we can volunteer at Camp Oasis, we can share our story and offer support to our readers and followers like Sara Ringer of Inflamed and Untamed, we can create social networking platforms like Crohnology to help patients better connect with one another online and in person, and most importantly, we can collaborate.

As the chair of the ImproveCareNow and C3N Project‘s Patient Advisory Council, I lead a group of young patients in collaborating with interventions being developed by the C3N Project – and everyday this week myself and our two Patient Scholars (Jennie David and Sami Kennedy) will be telling you about one of them. This is the first time we’re telling everyone about what we’re working on, and how young patients with IBD can help us.

So look for our posts all week on LOOP, and get involved!

[editor's note: this post was written by Jill to kick off #ibdweek and was originally shared on her personal blog.]