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I've Had It Up to Here

I returned home on Tuesday evening, dropped my bag on the floor, sighed, and looked at the pile of clothes still sitting on a table beside my desk and thought, ‘Thanks for the reminder.’ I had been looking forward to attending a great IBD meeting in Montreal this past weekend - planning to, but in the end my unruly body decided that traveling was not a good idea. Consequently, I missed the conference, my friends, and had left the pile of clothes atop that table and spent the past near-week in the hospital.

 

I find that when I’m hospitalized, for the first few days with the nausea and upchucking and pain meds and exhaustion, I’m relatively okay with being in the hospital. Relatively. But then I reach a point, a threshold level, when I’m feeling okay enough or frustrated enough or just as though I’ve had enough and feel the inescapable need to devise my exit strategy.

 

Crawling into my own bed last night, I felt as though I simultaneously belonged nowhere and everywhere. There’s an ease in being transposed in hospital, academic, or home situations that is comforting but alarming. The same habits flood back to me - using my medical lingo (“No an 18 French is not acceptable, please get a 10 French, and I’ll be putting in the NG tube myself, thank you very much”), putting my disease history in chronological order (deciding, as doctors have taught me, what is relevant and what is ‘personal’), reciting my IV speech (“I’m a hard stick, go a little higher or a little lower, but try wherever you think you can get it”), and explaining my ever-faithful teddy bear companion (yes, even at 21 years old). It’s routine. But it’s also disorienting, a feeling that leaves me awake at night, blinking at the ceiling, wondering when the bruises on my arms will fade and knowing that the ones on my spirit may never quite heal. This is not intended to sound fatalistic or depressive, just honest, a feeling that sucks me back to a fetal position regardless of the 9 years of IBD, until I feel like a little girl just wanting to be hugged.

 

A friend, who was at the conference that I missed, was texting me today and asked me how I was doing. Throughout our conversation, he asked me if I was taking it easy and taking care of myself. I replied that I think we both do a much better job of taking care of others than taking care of ourselves. I’m the first one to hold someone’s hand, to hug them, to offer company to the hospital or an equally difficult/upsetting task, yet the last one to ask for my hair to be held back as I vomit. And luckily for me, I have friends who do not ask (because they know I’ll politely decline) and help me out anyway and I love them for it.

 

Similar to my reaction to the over-sized NG tube, sometimes that tantrum of “It’s just NOT FAIR” bubbles to the surface. And that’s okay, even if it feels like something I should’ve gotten over. When I’ve had it up to here, near-tears and all, the comfort of having people who ‘get it’ is immensely helpful. I don’t have to explain myself to them, and it makes me really believe that there will be more conferences, more opportunities, despite the pain and frustration that accompanies any chronic illness.

 

My only advice when it comes to ‘having-it-up-to-here-moments’: eat a cupcake (if tolerable), stare at a picture of PDemps for a while, listen to a favorite song, dig up your old yearbook and reread notes that make your heart warm, hug someone, and remember that there are always people in the wings waiting to catch you.

 

Jennie


ICN Remission Rates: A Real Improvement

Control chart showing ImproveCareNow Remission Rates as of December 2012 for centers with greater than 75% enrollment of eligible IBD patients

A control chart allows us to detect when there has been a significant change—a real improvement.


This graph shows that the remission rate has been increasing steadily since February 2012, and in August 2012 the remission rate crossed the dotted line (the upper control limit), indicating that a real improvement had occurred.  It also shows that the average remission rate has increased from 60% in 2007, to 71% in 2008, to 75% in 2010, and to 77% in 2012.  The ImproveCareNow Network will continue to apply the Model for Improvement and use QI tools to improve the remission rate to 80% or more.


To Nudge or to Push

Mother to teenage son:  “Hey, have you taken your medicine yet?”

Son (playing video games): “I will in a minute!”

Mom (wondering whether it’s worth the fight):  “You know, you’re gonna move out in a few years and you’re going to have be able to do this without me telling you.  And you know you don’t want flare-ups if you can help it!”

Son: “Nope, you’ll have an alarm on your phone and you’ll just call me and keep nagging until I take it.  Can’t wait for that!” [insert sarcasm]

And, end scene.   Mom walks offstage slowly, imagining how many more times she’ll ask before he takes it, if he’ll ever fully be in charge of his body, maybe whether he’ll be living on her couch at 40….

Is this exaggerated?  Maybe.  But I know many families in this boat.  They don’t have emergencies, and they get a clean “Good job, no problems this quarter!”  during the GI checkup. The child has a good quality of life when it comes to school and sports and social time and… it’s because mom stays in charge. She’s in charge of the medicine, the questions for the doctor, all the IBD knowledge necessary to lead a good life.  She’s running this show!

How much should we push our teens to start taking charge and showing responsibility?    It’s difficult.  If we push too little, they don’t grow up.  If we push too hard, they may retreat and we'll keep doing everything anyway “because someone has to.”  And by the way, ‘Why wasn’t that last flare and hospitalization enough to make him wake up and start doing something about it?’

Read more

The Search for New IBD Therapies & Cures

Last month Peter Margolis, MD, PhD - Scientific Director for the ImproveCareNow Network - was interviewed by Steve Usdin of BioCentury on the topic of Network Building.  What jumped out at me was Peter's response to the question: Can the Network that you've created also be used to help in the search for new therapies and cures?

Take a look at the video clip: BioCentury 12.30.12 | Network Building

I've worked with ImproveCareNow for over two years now and I am constantly impressed with the growing variety of positive outcomes that stem from the work being done across the Network.  Although hugely important, it's not simply about raising and sustaining remission rates for kids with Crohn's and colitis.


Post 137

Season's Greetings from ImproveCareNowSending our very best wishes to everyone in our community for Happy Holidays and a Healthy New Year!  Read more >>


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


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