Author Archives: jillplev

Personal experience

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[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?

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Jill Plevinsky

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.]

Story of Self | Jill Plevinsky

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Jill Plevinsky

Jill Plevinsky | Patient Advisory Council Chair

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.