ImproveCareNow Pac


Nobody Puts Baby in the Corner (or a Space-Saving Bag)

Today in class, a guest lecturer talked about patients with chronic illness “having to get used to” their new roles as patients. Those words were not the main point of the sentence; they were the words you say trying to pad the time, but nevertheless they were there, sandwiched in between other ideas. It made me think of space-saving storage bags. My grandparents bought them years ago, in an effort to control the umpteen crocheted afghans that had begun to overtake their Florida condo.

There’s a sense of disbelief – or at least at 13 I possessed such a notion – that overtakes you when watching someone demonstrate a space-saving bag. They show you the pile of items to be stored and the nonsensically small bag that the items will supposedly all fit into. No, your reasonable brain informs you, this is impossible; it is foolish, for it seems like trying to fit the entire American population into the state of Rhode Island. But the miracle is performed; disregarding your doubt, the vacuum is hooked up to a special port in the bag, sucking air out and shrinking down the large pile until it is neatly, possibly even comfortably, squished in the teeny space-saving bag. And this is what I thought of, as the speaker lectured, about fitting into bags that can't possibly contain the whole of you - until you shrink.

There is something about being a patient that is belittling, and for the chronically ill, something that is voluntarily so. We comply and save our feelings for favorite books, comfort food, the song that always makes us smile, the memory of our first car, our first kiss, our first failure, plans to travel the world, and whatever else makes us up.  Instead we don the Johnny shirt, shrinking into our own space-saving bag. We become reduced down to our disease; a list of symptoms, a medicine cabinet of pills, a medical record number.

If there is a manual on how to deal with a chronic illness, I missed it. As far as I'm concerned there are no rules, all you can do is live (and trip) gracefully. Yes, it is important for people with chronic illnesses to learn about their illness and to adjust to what it means (read: adjust emotionally not adjust your expectations about your life's possibilities).  But it is also important to be true to yourself.  When I wake up in the morning and get ready for class, or sing along to some favorite lyrics, or tell my parents about my day, or make cupcakes for my roommates; I am not my disease. I am Jennie. I am a girl graduating from college who wishes Patrick Dempsey would marry her - and so many other things. I politely, but fervently, refuse to be put in a space-saving bag, because it’s impossible to shrink me down and after years of being reduced to a diagnosis, I will no longer allow it.

The noun ‘doctor’ comes from the Latin ‘docere’, which means ‘teach’. ‘Patient’, on the other hand, is also Latin but means ‘suffering’. Even if you can manage to overlook the double meaning of patients having to be patient, the roots of the words speak for themselves. But the best doctors are the ones who suffer alongside you, who see the pain you’re too proud to admit to, who are normal and everyday and accessible and in that way wholly incredible and wonderful. And the best patients are the ones who never pass up the opportunity to teach a doctor, a nurse, or a medical student. The relationship between a patient and a doctor is dynamic and constantly evolving, and only when we can understand and respect it as a process will we ever be able to meaningfully work together – to quote a Taylor Swift song (but of course), “two is better than one”.

So be a little rebellious (if you’re like me, you never really went through the traditional teenage rebellion phase [Mom, Dad, feel free to disagree], you’ve earned it). You don’t fit in a space-saving bag, so don’t bother trying. Be patient with yourself, but no need to be only a patient – you are a teacher, you are incredible, you are a thousand other things, and (in the words of a fellow Crohnie) you deserve a beautiful life. That, my friends, is impossible to fit in a space-saving bag.

Jennie


Better

I'm often asked if I believe ulcerative colitis has changed me for the better.

 

It's a tough question. I can't go back in time and see how my high school years would have played out otherwise. There is no me, as I am now, without ulcerative colitis.

 

Has ulcerative colitis changed me for the better? The simple answer is no. My disease has not changed me outside of my intestines. I am the same girl with a few extra pills. The more complicated answer is yes* - with the asterisk. It's based on a technicality. No, UC has not changed me for the better, but living with UC has.

 

It starts with another girl: one named Tara. She was diagnosed with Crohn's Disease during her second year of medical school. A few years later, Tara had chosen to pursue a career in pediatrics and found herself on the inpatient rotation at my children's hospital in April '08 - the month of my diagnosis and subsequent hospitalization.

 

You can guess how this plays out.

 

I was the "I'm okay" kid in the hospital. I felt so good on steroids and so relieved to have a name for my disease, my answer to most everything became standardized. Did I want a visit from the art therapist? "I'm okay, thanks." Did I want another blanket? "I'm okay, thanks." It was my standard answer, so if asked if I wanted to participate in a mentoring program, I would have probably answered predictably: "I'm okay, thanks."

 

Tara was the mentor this "I'm okay" kid never wanted. She stayed one day after rounds to share her story. A day past diagnosis, I hadn't yet started to think about what a future with IBD meant. Thanks to Tara, I never doubted my potential. From the get-go, I knew Tara's story. If she could continue to pursue her passion with IBD, my possibilities were equally endless. Until I met Tara, I didn't realize mentoring is not an emergency measure; it's a survival skill. Her confidence inspired my confidence.

 

Being a good mentor is not about knowing the "right" thing to say or the "right" moment to say it. There will be moments when you don't know what to say, and there will be moments when it's best to stay quiet and just listen. Being a good mentor is not about the story; it's about the storyteller. The best storytellers - and the best mentors - realize that every story matters - and every story can change another story for the better.

 

Until I met Tara, I never believed a single patient voice could matter. Clearly, as I'm here blogging, I do now.


Follow The Leader

Many years ago now, I was at an IBD conference with several other patients. It was the last day of the conference, and we were sitting in a room, chatting at white-clothed tables with our suitcases at our feet. At 16, I was the youngest in the group by a couple of years - the others were a mix of guys and girls: college-students, with boyfriends and jobs and so on. The moment that is so clear in my mind all of these years later was sitting next to one girl I admired so much and bursting into tears. Alarmed (she had only known me for 48 hours, it was alarming to start sobbing!), she asked me what was wrong. Through my tears and melodrama I blubbered, “I don’t want to go home! No one else understands me like you guys do!”

 

Even though it sounds silly and very over the top, to my younger self, it seemed like nothing had ever been more true. I suddenly had a family of older brothers and sisters who got it, who could coach me from the sidelines and pick me up as I tripped trying to figure out adolescence with a chronic illness. And interestingly, if you asked the group why they were involved, the answer was always the same - so the younger versions of themselves would have the support and encouragement.

 

And it’s true - knowing someone else like you could do it means so much, it’s the I-think-I-can to the I-KNOW-I-can attitude switch, which is priceless. For me, that was the moment when I was suddenly in charge of my life again, and since then I have been fortunate enough to be that support for other people. Having mentors and people to look up to, gave me hope when things felt small and constrained, and in a lot of ways it gave me the fuel to keep going.

 

I am still in touch with my IBD friends from that first conference. Many of them are engaged or married, working and successful, one girl and her husband even have an adorable little boy. Yes, they are still sick, they still struggle to find the balance between patient and person, but they are living and doing an incredible job at it. Their mentorship to me is something that I will never be able to adequately thank them for, so instead I hope that by aspiring to be like them I will make them proud.

 

Jennie


Never Say Never

Under normal circumstances, I would avoid quoting my fellow countryman Justin Bieber in the title, but this my friends is anything but a normal circumstance. You see, I have set a record for myself. I went the entire semester without being in the hospital.

 

My first thought, ‘Is this what college is supposed to be like?’ Answer: apparently. Who knew. I managed to forgo my frequent flyer status at the local hospital (after all, the rewards are less than desirable, I’ve already ‘won’ enough scars to last me a lifetime) and get to all of my classes. I didn’t miss a class for feeling sick - instead I missed a couple of classes for attending an IBD conference and running a half-marathon. Sure beats my ‘sorry-I-decided-to-live-in-the-hospital-now’ line that has accompanied every semester.

 

My parent’s reaction to this: IT’S ABOUT TIME (yes, the feeling can only be expressed in caps). This semester has been full of college firsts - having a kitchen, living with roommates, starting my senior thesis. I think of my roomies, we’ll call them Maya, Mimi, and Ana, and can’t remember a time when I didn’t come home and see their faces, grinning at me, or bake them cupcakes or have silly dance parties to Disney songs. I felt this kind of way after my ostomy surgery a couple of years ago, like the reset button had been pressed and all of a sudden I was turned out bright and shiny (quoting Grey’s Anatomy, but of course).

 

If things were always sunny, I wouldn’t know any different. But when things are dark sometimes, it's nothing short of glorious to open your arms wide and squint into the sun. Not metaphorically, having had a rough go of it for my freshman through junior years, it means all the more to me to have had a wonderful fall semester of my senior year.

 

But this is not to say that challenges are not hiding behind my closet door and under my (impossibly high) bed (note: the bed is very high, I have a stool to propel me atop it). My small gut is dotted with grumpy ulcers, ready and waiting it seems to rain on my beautiful parade. But now it’s different - I have a say in my care, an absolutely wonderful GI, roommates and the best of friends who are all to willing to pick up prescriptions and keep track of what I’ve eaten during the day (“Jennie-fer, what have you had to eat today?” note: ‘Jennie-fer’ is my name for when I’m ‘in trouble’), and just be there and not talk about IBD or bowels or bags and just be 21. Of course sometimes I’m scared, sometimes there are tears, and sometimes I am angry that my body will never give me a break.

 

But more often than that, I am so very happy to be where I am. The other day I was standing in my living room on the phone with my Mom, and had this thought:  ‘Wait, how did I get here?’ The sheer fact that I’m a college senior, without any medical leaves: who's had two surgeries and extensive hospital stays, made me wonder how it all happened. And here’s how - with a lot of help. My parents, my friends, my professors, the disability office on campus, and my doctors. My education has and always will be, if I am so lucky, a communal effort. There is no way to thank everyone, all I can do is try and keep running as fast as I can toward my dreams.

 

Life is big and giant and arguably impossible and overwhelming at times. Maybe you feel like you can’t do something all by yourself, but the thing is there’s no reason you should have to do anything by yourself. There are so many others who love you and who are rooting for you on the sidelines (if you can’t hear them, maybe it’s just that your thoughts are turned up too loud). You can do it.

 

Remember, in the wise words of Justin Bieber - never say never.

 

Jennie

 

[Editor's note: Original post featured on The Gutsy Generation.  We made a few minor edits for clarity and to include links to other posts by Jennie, which you'll enjoy.]


One More Time, Just For Kicks

[Editor's note: posted originally on The Gutsy Generation, Jennie has shared One More Time, Just for Kicks with LOOP.  Enjoy!]

 

What would be the fun if things were easy? I prefer the harder, circuitous route that takes you a thousand miles out of the way only to end up a step behind - clearly the more enjoyable path.

 

I’ve since lost track of which stories I’ve employed as metaphors, but alas I shall tell another in the hopes of demonstrating my point. When I was about 9 I was sledding with a friend on this big, enormous, wonderful hill (that seemed like a mountain at the time) near my house. The short of the long story was that there’d been an ice storm that day before and the hill was slick and frozen. Regardless we still thought it was a good idea to sled, and we climbed in this big purple Rubbermaid sled (goodness knows why Rubbermaid made such a sled, but I’ll have you know it was quite hefty and heavy), her behind me, and pushed off. Needless to say it wasn’t the smartest idea to be sledding in such conditions, and soon enough we flew off a bump, did a 360 in the air, then I landed on the ice chest first, then her on top of me, then the big ol’ purple sled and all we could hear as we moaned and slowly slid down the hill was my Mom screaming at the top. When I decided to have ostomy surgery a couple of years ago, I did so knowing that I would still have Crohn’s, still have a chronic illness, still have medical decisions to be make, but it was a big step in treating and addressing my disease. And it was. I don’t for the smallest fraction of a second regret my choice. IBD treatment has been described to me as ‘step up’ treatment (ASAs to steroids to immunosuppressants to biologics to surgery) and by all accounts a complete protocolectomy at 19 was the most aggressive treatment possible. But now as I sit here with a flare-up, it feels like I did when I landed on my chest on that icy hill - the you-have-got-to-be-kidding-me-this-is-ridiculous kind of head-space. Even though I know it’s not true logically or medically, it feels like I’m back in the same place as I was before surgery making these difficult decisions about difficult medications.

 

It’s kind of funny - I’ve never had a flare-up without my colon before. To quote Aladdin, it’s a whole new world. Don’t get me wrong, it still sucks and hurts and seems particularly unnecessary and unpleasant. But I’m not running to the bathroom, and all of my colonic symptoms are only memories. I know for my parents they hoped - with good reason - that my surgery would be more or less the final event in my IBD journey, at least for longer than two years. I can sense their disappointment and frustration on phone calls, just as I feel disappointed and frustrated at times, but I know that I have their support about whatever treatment I choose (to this point my Dad informed me that my Mom and him were “100000% behind me”).

 

It’s kind of like when you’re somewhere and you smell something that seems familiar but it takes you some time to place it - having a flare and being ‘sick’ again is a transition that I’m getting used to. After standing on my soapbox about taking your time with medical decisions and so on an so on, it’s about time I take my own advice.

 

I just have to hold on, and close my eyes for the scary parts if I need to. Here we go.

 

Jennie


#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


← Previous  1  2    24  25  26  27  28  29  30  31  32  Next →

Built by Veracity Media on NationBuilder