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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.]


Emma: Your Waiting Room Ally


Today is the second day of Crohn's and Colitis Awareness Week. Throughout the week, Jill, Jennie, and I will be taking turns profiling some ImproveCareNow innovations we are incredibly excited to share with the community. I have the honor of introducing Emma, a promising initiative out of Oklahoma University (OU) Children's Hospital  to bridge the gap between tech-savvy adolescent patients and their gastroenterologists.

Who is Emma? Emma is the main character in a captivating iPad game of the same name, developed by OU students in collaboration with Dr. John Grunow. The Emma iPad app is designed to engage young patients in the waiting room, educate them on how to better manage their IBD, and give clinicians a preview into their patients' health and needs. Each session is customizable to a young patient's diagnosis and history.

Put an iPad with the Emma app in the hands of a young patient; she's a little bit anxious about her upcoming clinic visit, but is tech-savvy and somewhat disengaged in the waiting room. Emma transports her into a colorful, interactive four-realm world. It reads like a storybook at first, but soon launches into a variant on Angry Birds. The adventure begins in Port Vanguard, the portal to all four worlds. Soon, our patient is swiping her fingers across the touch screen, navigating Emma's rocket ship through hazardous terrain and "boosting" it when it starts to fall. It's familiar, it's engaging, it's competitive....and it's educational!




Emma App Screen Shot Welcome to Port Vanguard Screenshots from Emma app courtesy of Robert Free (co-developer)

Emma 2As our patient plays, Emma slips in multiple choice questions that test her comprehension on topics like nutrition and self-management, questions customized to her diagnosis. Emma also asks the patient to rank her quality of life and emotional health. Emma sends our patient's responses and a summary of  specific target areas of patient education which need work to her gastroenterologist. Her GI can then tailor her subsequent visit to address gaps in her understanding of her diagnosis and specific areas of concern. Emma is all about streamlining the clinic visit to make effective use of everyone's time. The app is currently being beta tested at OU Children's Hospital, where a select group of patients are helping Emma reach her full potential before hitting ImproveCareNow centers nationwide.


Why do I think Emma is so brilliant? Emma is an effective and clever use of technology, which has been designed especially for a tech-savvy generation. Emma engages patients in the waiting room while giving physicians a quick pre-visit snapshot of their condition. She turns waiting room downtime into a productive use of patient energy (and maybe even jitters!) to better the patient-physician dynamic. I met Emma this past summer during a Patient Advisory Council beta test opportunity and was immediately impressed. As I transition into adult care, it's exciting to watch technology improve the pediatric clinic environment I lovingly leave behind. Emma is innovating the clinical experience, starting right in the waiting room. That's a real game-changer.




Open not Broken

I started off my life with Crohn’s as a nine year old boy with very little support outside my family … and frankly I just did not want anyone to know. I had some goals – mostly about excelling in school. During my years of elementary school and junior high, I told nobody about the battle I was having inside.  I didn’t want anybody to know about it and I certainly did not want to stick out from the crowd. “I want to be invisible,” I remember myself saying.

 

If you ask my friends now, they will most likely tell you that I stick out like a sore thumb. After you show your face on a video screen in front of the entire high school to tell them about Crohn’s everyone pretty much knows who you are. The other thing they might tell you is that Alex loves not being "normal" and he is okay with being different.

 

Some of this perspective on my changed life came to light while I was sitting in church listening to a sermon. I honestly don’t listen to all the sermons.  Maybe it’s that some of them are just over my head; but this one was different.  In his sermon the minister at my church compared the breaking of bread to the breaking open of one’s heart. He says, “We don’t usually think of being broken as a good thing. The word ‘broken’ really has a bad sense about it, suggesting that something is useless because it doesn’t work anymore. But suppose we think of it more in terms of ‘broken open’ and offering a way to get to the inside of the thing.” His philosophy about broken hearts really struck me. I wonder now whether he wrote this sermon about me.  Because when I think back I was broken (or at least my intestines were); and somewhere along the way that broken heart or broken situation, in my case, opened up.

 

I am now okay with everyone knowing I have Crohn’s.  I don’t have to hide in a corner when my Mom flushes my PICC line and I am okay wearing my backpack with my TPN lines hanging out and the pumps whirring away in public.  I enjoy meeting with my Doctor and talking about my disease with him, and speaking to other people with ostomies and IBD. The things that I hid from before have turned into my favorite things to do. The shy, soft-spoken boy has been replaced by an open, out-spoken one because I was willing to open my heart to my disease.


None of Your Business

For a long time, I thought I owed people disclosure of my Crohn’s disease. I thought it was as obvious as my hair color and couldn’t get far into a conversation without it coming up in some way. And in truth, virtually any story from the last nine years relates back to my IBD, but nevertheless the disclosure was a near-immediate thing.

 

I challenged myself when I came to school to not tell people. Not to hide it from anyone, but to be Jennie first and a person living with Crohn’s second. But now, as I apply to graduate school, I feel torn.

 

Whenever I tell someone that I want to be a pediatric psychologist for chronically ill children, they always raise their eyebrows and comment on how specific it is. Why, they want to know, did I choose that? Well (insert sigh here), I often tell them, I have Crohn’s disease.

 

But this, in all reality, is not really true. Of course I do have Crohn’s, but I don’t want to be a psychologist because I have Crohn’s. My exposure to pediatric chronic illness was because of being a patient, but why I want to pursue Psychology is because I’m extremely passionate about the field and doing research. Not as a patient, as an academic.

 

And this is the push and pull of my disclosure saga - to tell or not to tell. It’s one thing when I’m sitting face to face with someone and have the opportunity to explain and show (aka flash) my ostomy and delve into my whole gut-filled story. Sure, okay. It’s quite another when I’m applying to graduate school and trying to articulate my relevant research experience, to people that I have never met before all over the country who will likely only look at my application for a matter of minutes. In this case, disclosing excessively seems unnecessary - an unprovoked therapy session almost - and so I’ve tried to step carefully, disclosing succinctly in a way that does not consume my personal essay.

 

The heart of the issue is that it’s my story to tell. Disclosing is a choice and I get to decide who gets to know. Be it for graduate school, or a new friend, or a boyfriend, I can choose whose business it is.

 

Because I am not Crohn’s. I am Jennie, and proud of it.

 

Jennie


ImproveCareNow to Publish CIRCLE on IBD Transition

CIRCLE eNewsletter is published by ImproveCareNow for Patients and Families living with IBD

The December issue of CIRCLE will be published on Tuesday November 27th.  The eNewsletter, which is published by ImproveCareNow for patients & families living with Crohn's disease and ulcerative colitis, will feature parents talking about transition points, supporting each other and the importance of caring for their kids now.  We'll include some tools and resources on transitions too.  And as always, you'll find links to trending IBD topics from the past month, up-to-date ImproveCareNow remission rates and more.  Don't miss it. Sign up to have CIRCLE delivered to your inbox today.



Laugh & a Half

It seemed like a good idea the way that all things seem like a good idea at first. I told my Mom, and this was her exact reaction, “What? You’re going to run a half-marathon?” My Mom laughing at me should have been - for a normal person - a road-sign to turn around, to rethink the plan. But no, instead I smiled and said, “Yes!”

 

But this story doesn’t really begin with me. It begins with an email. I met my very dear friend Taylor through The Gutsy Generation blog. Without fail, we would text or email daily - but we had never met in person. We were enthusiastic to meet in person (I know, it sounds like a cheesy romantic comedy, but stay with me), but it seem idealistic and near impossible between our school schedules and the geographical distance. But - if there’s a take-away message to this blog post - never, under any circumstance, underestimate two gutsy girls.

 

And so, one day in June, Taylor and I decided to run the Niagara Falls International Half-Marathon. Crazy? Yes. Gutsy? Certainly. We were both runners already and it was a fantastic excuse to meet in person. The preparation got underway with the creation of a ‘GUTSY MARATHON MIX’ (yes, in all caps!) and the continual sharing of songs to be vetted for the playlist. I booked my flights - it was all happening for real.

 

I’m not an especially athletic individual, but in the last few months since my surgery in January, I’ve hiked Machu Picchu and completed a sprint triathlon, so it only seemed right to continue on in my crazed athletic quest. I had told several people about the race, including my roommates who made the most adorable signs for me around our apartment. Jennie's SignEarly Thursday morning, I boarded a plane and met my very good friend in the flesh. And it was as if we’d always known one another. We continued to find little things that fueled our theory that we’re the same person (e.g. we use the same toothpaste, go to schools with the same initials, etc) - we might have become friends because of our IBD, but we remained friends because of who we are as people.

 

The half-marathon was not for IBD awareness, but that didn’t deter us. We made shirts that had our last names on the back, our year of diagnosis, and then ‘Colonless 1’ and ‘Colonless 2’ on the sleeves. In a word, we were psyched. Morning found us quite early on Sunday, and we gathered in the kitchen, making our marathon breakfast, grinning sheepishly at each other and trying to imagine completing the 21 km course.

 

The day was perfect - perfect weather, perfect scenery, perfect. The course followed the water and with the changing leaves, it was a beautiful (albeit very long) Sunday run. People were cheering, holding water on the side of the course, there was even a little boy with his hand out for high-fives (of course I stopped and had to restrain myself from asking his parents to take a picture with me). It was just me and my iPod and the bounce of my braid against my back as I ran. Just open road and sunshine and a very big, but attainable, challenge ahead of me. I began the race to “We Are Never Ever Getting Back Together”, my ostomy anthem, and was ecstatic to be able to listen to my gutsy marathon mix during the race. There were moments when it was hard and my feet were sore, moments when I tried to drink the water while running and instead doused myself in it, and moments when the sound of the crowds cheering and the cow-bells ringing could only make me feel so happy to be where I was.

 

I felt this exact way in Peru and during the sprint triathlon - you look forward to the finish line so much because there’s a sense of accomplishment and awe, but those last few feet when you can see it, you want to turn around and do it all again. I sprinted the last 100 meters or so, crossed the finish line, which was amazingly at Niagara Falls, and was given a pro-style aluminum-like cape and a medal. I. Had. Done. It.

 

Jennie at the Finish LineNow to get all philosophical on you: In life, and especially life with IBD, there are no guarantees. There are ups and downs, times when you feel awesome and times when you’d prefer to pull the covers over your head and pretend the world wasn’t waiting. Taylor and I had a mantra the entire weekend leading up to the race, “Hell or high water”. We were both sick or injured in some degree, but were determined and completely obstinate - we were running the race and nothing could stop us.

 

Hell or high water, people. Hell or high water.

 

Jennie


What We Wish Our Parents Knew

Mother and Daughter not talkingAt ImproveCareNow’s Fall Learning Session, the Patient Scholars and parents had a special breakout session together. At the parents’ request, Jennie and I have co-authored a list of What We Wish Our Parents Knew navigating IBD through our teenage years:

1) Take a deep breath: Living with IBD as a teenager isn’t easy, but it doesn’t need to be figured out all in one day. There are going to be days that go according to plan, and those that really don’t - sometimes just getting through the day is the goal.

2) I’m moody; get used to it: Regardless of my IBD, I’m still a teenager, and I’m going to be moody sometimes (or okay, a lot of the time). It doesn’t mean I don’t love you, it doesn’t mean I don’t need you; it just means I’m growing up.

3) Let me cool off: Between the stresses of growing up and dealing with my disease, there will be times I just want to be by myself. Let me take some time to calm myself down. I will come to you when I want to talk.

4) I’ll know when I’m ready: The second best decision I made after my diagnosis was to join a teenage support community. The first best decision was to wait until I was ready to make the most of it.

5) Forgetting is not failing: If I forget my pills a few times or make some choices I’ll regret on the toilet tomorrow, don’t assume you need to charge in and take control. I know it’s hard for you to watch, but you’ll make more of a difference if you ask me how you can help me do better instead.

6) One of these kids is not like the others: Especially when I’m sick, try to go easy on and make time for my brothers and sisters, even if it means taking time away from me. Remember that we all don’t know how it feels to be each other.

7) Caring isn’t always sharing: I know you don’t like when I don’t tell you about the blood or mucus or pain until it’s been happening for a few days – but until there’s something we can do about it, I’ve always felt it’s better for just one of us to be scared. Trust me to know when I need to come to you and when I don't.

8) It’s my body, and I’ll decide if I want to: I am going to be moving to adult care soon, and it’s important that I’m prepared to be my own medical advocate. Help involve me in my care, encourage me to call my nurse and refill prescriptions, listen carefully to my concerns and ideas, and help me make decisions with you and my medical team.

9) There’s nothing like a good IBDer: My IBD friends will just ‘get’ it, and it’s really important to have that social support - it helps me feel normal and social.

10) Hello, my name is IBD: If I ask you not to mention my disease in a public situation, it doesn’t mean I’m embarrassed. It may just mean I’d like to introduce myself before I introduce my disease.

11) At least it’s not ..... : Some of my friends with IBD or other chronic illnesses will be healthier or sicker than myself, but please don’t make comparisons. I know my worst may be someone else’s best, but that does not mean I don’t have a right to mourn my losses.

12) What hurts the most: When you say you’d take my colon from me and give me your healthy one if you could, I know it’s because you love me and hurt seeing me in pain, but I could never dump this on you. Some days, I wish you could see my perspective, but the thought of you feeling my pain makes me hurt more than anything.

13) Home is where your guts are: I don’t want to be defined by my disease, and part of that is going to school/work where I want. It’s possible to leave home and travel for school. With the right accommodations, I can do anything. I know my body and myself, and I can decide what I can handle.

14) Forever isn’t tomorrow: Sometimes, it’s okay to live in the moment, and make decisions for the next week or next month or next semester, without worrying about where we’ll end up. This is a forever disease, but we don’t have to make decisions for forever today.

15) A bumpier ride makes for a better story: Life is not going to be easy as pie living with IBD. Every year will be something different, but if we hold on and stick together, we’ll emerge one way or another.


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