ImproveCareNow Ibd_awareness_week


Crohn’s & Colitis Awareness Week 2017

FB_Cover_-_CCAW2017.png

Thanks for joining us during Crohn’s & Colitis Awareness Week (December 1-7). Each year we are excited to do our part to raise awareness of Inflammatory Bowel Disease. This year, we decided to debut a collection of our Care Cards, which have hand-written messages of hope and support from members of our community to patients with IBD and their families. We invited everyone to show their love for these cards by liking and sharing them with others – to reinforce the message: You Are Not Alone!


Who is an advocate?

In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I'd come back from my blogging hiatus and talk about what it means to be an advocate.

Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler - and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years.  I remember how much I once idolized many of the 'popular' IBD bloggers. I didn't really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she's just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.


IBD flare...a lesson in humility

Flare. It’s a common, yet dreaded, word used by IBD patients.

 

You would think that being a Crohn’s patient for nearly ten years, it would be a word I’d be quite comfortable with.   Or at least a word that I use when describing my medical history and disease symptoms to others…but, ironically, it’s not.

 

I’ve always been one to downplay the severity of nearly everything going on inside my disease-stricken body.  I’m sure many of you know just what I’m talking about.  These responses may look all too familiar to some of you…

 

“Today was a relaxing day…I got some good reading done!”  (While this is true, I strategically left out the part about doing 90% of that reading while in the bathroom.)

 

“Yes I had surgery last week, but no worries it was pretty minor”.  (Is there really anything minor about months and months of recovery time?!)

 

Or, my personal favorite…“Yeah, today was a good day!”  (Did I mention my “day” began when I was finally able to drag my fatigued body out of bed at 4 pm?)

 

While I pride myself on having a positive attitude and outlook most of the time, I’ve found that this positivity is also sometimes a warning sign that simply says one thing…denial!  My ability to seemingly immediately emphasize these “silver linings” is a way in which I deny what is actually going on with me to others, but more importantly, to myself.  Because let’s be real, who really wants to admit the reality of all that a flare entails!

 

And that, my friends, is why the word “flare” is not a common word in my vocabulary and I assure you it is not because I have been in remission for most of, or even half of, the last ten years.  It is because I don’t want to admit it.  For some reason, in my mind admitting this kind of thing threatens my ability to come up with endless silver linings and possibilities.  However, seeing that I have spent the majority of my time over the last four months between my bed, the bathroom, and the couch, I think it is safe to say…I am in a flare.

 

Saying those simple words is incredibly humbling for me.

 

Going from being a super independent 20-something to living back at home with my parents, needing help with the most basic of tasks is a huge lesson in humility.  I like to think that I can do it all, I can handle it.  And most days, that is absolutely true.  But sometimes, sometimes doing it all on your own isn’t necessary, and sometimes is just simply isn’t possible.

 

It is times like these in which I have to set aside my pride and rely on the support system around me to keep me going.

 

I must swallow my pride enough to reach out to the friend or family member that has said “let me know if you need anything” to say, I just really need someone to do a few loads of laundry for me, or could you come over this afternoon just to keep me company.

 

Yet one of the most humbling experiences I’ve had while being in a flare is that, quite simply, people can have a way of surprising you in the most unexpected ways.

 

Maybe the surprise comes when waking up to a chai tea latte (soy of course J) sitting on my night stand left there by my best friend stopping in as I was napping.

 

Perhaps it occurs when opening a package full of get well letters from a class of third graders, covered with drawings of the most adorable penguins because their wonderful teacher, and my dear friend, told them they were my favorite.

 

Or maybe it’s receiving an email from an IBD friend that simply says hey, I met another Crohn’s patient who is having a hard time and I think you’d really be able to help her.  And in that sentence, those few simple words, my sense of purpose is restored.

 

Humbling.  All of it is so incredibly humbling.

 

So here’s to being thankful for so many lessons in humility, and hoping that remission is right around the corner. And if it’s not, maybe it’ll be around the next one.


#ibdweek

Crohn's & Colitis Awareness WeekThanks for joining ImproveCareNow for #ibdweek!  If you're still not sure what that means, then go over to your Twitter account and type #ibdweek into the search box to see all the conversations that include that tag.  I bet there will be a lot!

In honor of #ibdweek, ImproveCareNow was so lucky to have three awesome ladies from the PAC - Patient Advisory Council - writing fresh new posts about health care innovations being developed by the C3N Project and tested by patients in the ImproveCareNow Network.  These innovations are going to help the ImproveCareNow Network transform chronic illness care for kids with IBD.

Jill - chair of the PAC - asked Is Awareness Enough and shared how Personal Experience is so critical in helping to design the best care possible for each and every patient.  Believe it or not, doctors don't know everything.

Jennie - wrote Ginger.io - the 'Psychic' Phone, about the iPhone and Android smartphone app that Jennie and others are testing right now.  The app collects data, called Passive Patient Reported Outcomes, and compiles them to help patients and doctors understand how activity is affected by IBD - and how changes in activity might predict the onset of a flare. Shoulder to Shoulder is about patient activation - or empowering patients and families in getting meaningfully involved in the design and delivery of their own care.

Sami - wrote Emma: Your Waiting Room Ally, about an iPad app that's bridging the gap between tech-savvy patients and their doctors.  Sami also wrote Not Alone: A Guide for the Climb, about the Self-Management Program - "Any tool that simplifies the complexities of living as a young person with a chronic illness is welcome in my book.   A free PDF of the handbook is available on the ImproveCareNow website; and will soon be released as a digital interactive program.  Sami finished out #ibdweek with YouMeIBD: Making the Connection.  It is a social networking platform that is all about bringing patients together based on more than just a diagnosis.  Here are two screen shots:

YouMeIBD Logo

YouMeIBD6


YouMeIBD: Making the Connection

Today is the last day of Crohn's and Colitis Awareness Week - a week of awareness and pride. Four and a half years ago, my world was rocked by my diagnosis of ulcerative colitis. April 22, 2008. Today, though, I'd like to suggest that my story really starts nearly three years later on April 11, 2011.

 

Three simple little words sparked many of my closest relationships: You. Me. IBD. Jennie and I are a perfect example. Although we have since found we have much more than our diagnosis in common, our friendship began because I also have IBD and (with an embarrassing amount of enthusiasm) wanted to write for her blog. YouMeIBD is also the name of a soon-to-launch C3N innovation. Young tech-savvy IBD patients are apt to go to the Internet looking for support, but they (a) may not know a safe community in which to find it or (b) may feel too timid or cautious to 'friend' others within a support community such as a Facebook group. We all may have the same diagnosis, but we all know our diagnosis is not our identity. YouMeIBD works on the presumption that mutual interests are far better indicators of friendship potential, and thus suggests friends for a patient based on mutual likes and dislikes.

 

How? A game-like quiz prompts users to answer questions about their likes and dislikes. Their answers, along with other information shared with the app, matches them to other patients within their age range with similar interests. Users can also create their own questions. The theory behind all of this is that use of YouMeIBD will be associated with increased patient social network density and engagement, an increased sense of well-being among patients, and ultimately better health outcomes. Why are connections between patients important?

 

 

 

In April 2008, I came home from the hospital with a link for an online support community. I shrugged it off with excuses for why I was okay on my own - and I was. For nearly three years, I got along just okay on my own - but just okay isn't wonderful. I felt a hole, but I knew it wasn't because I needed help. It took me three years to realize the opportunity to be a friend is just as valuable as the opportunity to have a friend. On April 11, 2011, I came home from school, where few knew my diagnosis and even less knew my story, and for reasons I can't remember, decided I was ready to click the link. I found a community that day. My world was rocked for the second time. The day I sparked my first connection around three words: You. Me. IBD.

 

 

 

Web MeetingYouMeIBD will facilitate those connections for so many more patients. By sharing our stories and connecting with other patients, we will be not only benefiting ourselves but the community as a whole. The research behind YouMeIBD suggests that while much communication regarding chronic illness among patients tends to be negative (though absolutely understandable), positive communication fosters motivation, happiness, and confidence. The psychosomatic effect of a patient's support community, or lack thereof, is profound. YouMeIBD's mission is to enable positive and constructive relationships, the key to which is connecting patients with ties between them that go deeper than their diagnosis. Jennie and I have contributed to the development of YouMeIBD for several months, and I speak for both of us when I say we are thrilled to be nearing the launch date for an application with so much potential.

 

 

 

A wonderful mentor of mine, whom I met through that very first online support community, once advised me: "If it's scary, then you should run at it even harder." It's a quote I keep on my computer desktop because I believe in it so wholeheartedly. IBD is scary, but I think it's even scarier if you allow that fear to paralyze you from taking steps forward toward recovery - of the body and the spirit. It took me three years to grow the courage to share my story and find support, but I would not be here celebrating Crohn's and Colitis Awareness Week or writing this blog post if I had not run towards that fear. Be brave. Reach out. Get involved. We've shared with you many opportunities this week, and there are so many more if you open yourself up to the possibilities. On April 11, 2011, I found the confidence to reach out, and that same confidence carried me to writing for this blog. It will be scary, but do it anyway.


Shoulder to Shoulder

A children’s hospital is, at its core, fundamentally different than an adult hospital; not better or worse, but different. My memories of my pediatric hospital include bright murals running down the halls, butterfly-shaped wards, having the Easter bunny visit when I was an inpatient, and a box full of finger-puppets courtesy of the blood lab. I was still sick, but there was a very intentional way that my parents were involved, like extra chairs in hospital rooms for family to dish out opinions and help decide. The first time I was in the adult hospital my Mom cried. The hospital room was beige, had four beds, and was wholly adult while I still felt like I was trying to grow up.Hospital Beds

 

When I was transitioning to adult care, I had a singular ‘transition appointment’ where I was supposed to magically become an adult (this, however, did not happen). It’s kind of like if you want to get from point A to point B with a dozen eggs - you should probably keep them in the carton to transfer them, versus spilling them into the bag without protection and ending up at point B with a bag dripping with yolk.

 

That’s why it’s so exciting to be talking about Patient Activation. Just as the name suggests, the goal is to help patients and their parents become more active and engaged in their medical care. If you want to go to Spain and speak fluently, you need to do more than buy a dictionary – you need to practice.

 

Currently, the Patient Activation intervention is capitalizing on something patients are really great at – using their phones. Participants receive texts on a weekly basis with a question about their health status and when they text back, the answers are saved. And then all of their responses from the Inter-Visit Planner are aggregated and given to the participants and their doctors. What’s so cool about this is that participants and doctors are entering an appointment with things to talk about, which help everyone make better decisions about their medical care.

 

Another really interesting part of this intervention is the Patient Status Tracker, which helps translate medical language into accessible English. I can remember sitting in appointments when my doctors would talk to one another and I had no idea what they were saying, even though I was sure they were speaking English – medical lingo is hard to understand, especially when it comes to test results. The tracker gives participants an insight into their care through visualizations of test results and plain language.

 

Growing up is hard. All of a sudden it’s a lot to be responsible for, but when one of those responsibilities is medical care for a chronic illness, it’s all the more important to have the necessary skills and support. This way we can truly stand shoulder to shoulder with our doctors, hand in hand, to make the best decisions for ourselves and our diseases.

 

Jennie


Not Alone: A Guide for the Climb

As a kid, my favorite wintertime activity was sledding on this giant hill in front of my house. I remember dragging my little red sled up the hill through the heavy snow, occasionally giving up and looking to my dad to carry me the rest of the way. Coping with IBD can feel like an uphill climb too. Learning to live with a chronic illness can be scary and complicated, and it takes effort and energy. It can feel like taking a big step into the unknown with little feet, and the uncertainty can deter many patients and families from taking active roles on their care teams. I had so many questions after my diagnosis. What does this really mean? What will my life be like now? What do I do?

 

IBD Self Management HandbookLiving Well with IBD: A Self-Management Program endeavors to answer those questions and more. This handbook, accessible digitally and in print, aims to simplify an abundance of information that patients and families need to acquaint themselves with to become engaged and informed members of their care teams. Both formats are colorful, interactive, easy-to-read, and can be consulted whenever necessary.

 

There are sections that walk a patient and their family through understanding their diagnosis, various treatment options, common procedures, growth and nutrition information, available resources, and the importance of treatment adherence, and so much more. Each section clearly lays out each member of the care team's responsibilities, emphasizing that smart management of IBD is a true team effort.  Short-answer and multiple choice questions at the end of each section encourage patients to review the information and consider any questions or concerns. There is plenty of room for patients to write questions and to-do lists to help keep track of their responsibilities. Downloadable or tear-away forms are also available to assist young patients in managing their condition on a daily basis. The ultimate goal of the handbook is engaging patients and supporting successful self-management: encouraging young patients to take active roles in their care.

 

Most importantly, the handbook recognizes a truth I struggled to comprehend after my diagnosis: there is no cookie-cutter IBD patient.  Every patient is different and every diagnosis is different, so the handbook has been made to be easily customizable for each particular patient and care team's needs. Certain sections may be used frequently, whereas others may be used sparingly or temporarily skipped. The handbook's greatest asset as a learning tool is its flexibility in either format - it is broad in scope, while narrow enough to relate to a specific patient's journey. The handbook may be used as a tool during and/or in-between office visits, depending on a patient and provider's needs.

 

Living Well with IBD: A Self-Management Program has been developed under the guidance of Wallace Crandall, MD at Nationwide Children's Hospital in Columbus, Ohio. The printable PDF version is available for download on the ImproveCareNow website, and is printed for you at some participating ImproveCareNow centers. The digital interactive version is in the final stages of development.

 

As a patient, I recognize the importance of good self-management tools. They enhance patient education, activation, and treatment adherence. Any tool that simplifies the complexities of living as a young person with a chronic illness is welcome in my book, and Living Well with IBD: A Self-Management Program succeeds. Living as a child or teen with a chronic illness isn't easy, but tools like this make the jump into self-management a bit less of a leap.


Ginger.io – the ‘Psychic’ Phone

When I was in a flare when I was little, my family could tell even if I was trying to keep it a secret. Sure, there were the usual signs like going to the bathroom more and not eating my whole plate at dinner, but my parents could tell I wasn’t feeling great depending on how frequently I used to heat up my magic bag.

 

Clearly I wasn’t going to be a world-class spy, I gave myself away too easily.

 

Patient reported outcomes (the good ol’ “How ya doing?”) are notoriously unreliable – we’re not always 100% accurate when asked to recall specifics about how we felt in the weeks leading up to an appointment. Passive patient reported outcomes are still reported by the patient, but in a way that taps into a behavior that has the possibility to tell our doctors something about what’s going on with our disease.

 

Since the summer, I’ve been a tester for Ginger.io, an iPhone app that does two things – 1) helps me keep track/think about my disease 2) tracks my movement (as per location settings) and records my phone’s activity. Now before this sounds like 1984 and Big Brother has come to the world of IBD, the idea is that my behavior will provide insight into how I’m feeling. For example, when I’m feeling really icky and just want to stay in bed and watch Grey’s Anatomy all day, I’m a) not moving a lot b) probably not calling a lot of people c) probably only texting my IBD friends if anyone. When I’m feeling great, I’m running around campus, checking my email, and doing lots of things on my phone. The intervention’s goal is to describe the connection between behavior (as measured by communication and movement patterns) and health.

 

Its quick and easy, a perfect couple-minute activity to do when I’m on the bus going to class or waiting in line. These are some screenshots from my phone to show you how easy it is to use.



Interested? You should be! If you have Crohn’s and an Android (yes, Android - there is a need for Android users to test the app currently) smartphone, go to http://ginger.io/join/c3n/ to sign up!

 

Jennie


Personal experience

[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?

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.]


1  2  Next →

Built by Veracity Media on NationBuilder