LOOP has a new home!

Web Launch __ LOOP

As part of a recent redesign, LOOP – the official blog of ImproveCareNow and home of #myICN stories – is now fully integrated into our website! If you’ve been staying in the LOOP by email, don’t worry you’ll still get an email when new posts are published. If you still need to sign up…

Stay in the LOOP!

We would also like to invite you to join the ImproveCareNow CIRCLE to receive:

  • Stories of how patients, parents, clinicians and researchers are working to ImproveCareNow for kids living with IBD
  • Opportunities to play a direct role in the improvement of care and outcomes by participating in research and quality improvement
  • Tools and resources for living with IBD – right in your inbox!

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Not Sorry

Jennie David QuoteAs a patient with a chronic illness, I have become well-versed at shedding my humanity and emotions and leaving them outside the clinic room, like taking off my shoes when coming home. We are made to believe, through experience and myth, that doctors are only interested in data. I am so practiced in this belief – or perhaps in that fear – that I can recite my diagnostic and treatment history in full, like rattling off a monologue with the medicalized Latin words becoming normalized. Admittedly, I find tremendous comfort and status rooted in such words, they are my only signal to tell clinicians that I understand and that I am an “experienced patient.” I try to find innocuous ways of displaying my knowledge, like a show pony, as I ask, “Was there radiographic evidence of an obstruction?” or, “My stoma hurts when the peristalsis pulls at the healed stitches.” Continue reading

And the crowd goes wild…

Whether it’s a concert solo, home run, parade, or when a family member gets out of the hospital after a long stay, there’s no feeling like when the crowd goes wild with support and encouragement. In these moments, the town you live in begins to feel like a community.

Last year, the town I live in won the World Series and it was amazing how we instantly felt like a community. Strangers giving each other high fives and hugs. Millions from across the U.S. and all over the world watching a parade to support one team. We all have a common bond that only a Royals fan could understand. The Kansas City Royals.

Why am I talking sports, solos, parades, and crowds in an IBD blog? Because to successfully deal with a chronic disease like IBD takes a community who truly understands, that will go wild, give you high fives, virtual hugs and support along the way. It’s been said that it takes a village to raise a child, but the village is only as strong as the common bond.

Many of us have been given the advice “don’t swim alone.” But a piece of advice often left out when your child is diagnosed with IBD is “don’t face the IBD journey alone.” After all, there is no “I” in TEAM. And with IBD, it takes a team to win.

In 2010, we made the mistake of starting the IBD journey alone. Our journey with a very sick child went something like this: long hospital stay, surgery, diagnosis, treatment options, decisions. Lots of upset, vocabulary changes, learning new words and poop colors. Suddenly everyone seems to know someone with IBD, so more advice and stories. Then comes the guilt and financial stress. And the list goes on!

Parents, family members, friends and our clinicians all tried to understand what we were going through, which we definitely appreciated. But there were some things they just couldn’t “get.” Which I bet many of you can relate to. There was still one important part of the community missing that we needed most – other IBD families.

Deb - a Smart PatientFour years later, when our other 2 kids were diagnosed (yes, that means I have 3 kids with Crohn’s!), we took a different path. Our clinic had become a part of the ImproveCareNow Network (ICN), which meant we now had a team to help us along the journey. ICN entered our world, and along with that came Smart Patients.

These two networks characterize what a real community is about and how a team should work: a common bond, good character, reinforcing a community-wide value of learning, collaboration among all stakeholders, quality improvement and co-production. Most importantly, they felt like communities I wanted to be part of: they embraced me like a family member, listened to my ideas, treated me with respect and as an expert in our family’s IBD journey, and were willing to give high fives and virtual hugs!

What makes Smart Patients unique follows what John Wooden once said – “Be more concerned with your character than your reputation, because your character is what you really are while your reputation is merely what others think you are.” The character of the Smart Patients community is one that includes trust, honesty, empathy, kindness, and respect. A person can share, ask questions, and not feel judged or alone on this journey. There are no horror stories, just stories that promote support. The community is monitored so the content remains positive. And if something comes into the forum that doesn’t quite make sense, research is always requested.

There have been times during my family’s journey that I just needed someone to say it will be okay – here’s your Raspberry Lemonade (my favorite drink) and the cure for IBD! It’s on those days that all I can do is smile, move on with the day, hold back the tears, pretend I’m okay. And then lean on the community to help me through. I know I can count on the ICN and Smart Patients crowds to go wild with support and cheer us through another IBD day. Because we all share the common bond to improve care in IBD. Not just for our kids, but for all kids.

[Author’s note: Many thanks to Deb for taking the time to share her story – about life with three children diagnosed with Crohn’s disease and the importance of finding support and other IBD families as an active member of the ImproveCareNow Network and the Smart Patients IBD Community. Parents and patients with IBD (18 years and older) are invited to join the the Smart Patients IBD Community online here: http://smartpatients.com/ibd]