ImproveCareNow Ostomy


Sometimes you don’t know what you’ve got till it’s gone…


The announcement from Daniel McLinden that the ICN Exchange was back up.

 

Recently, the ICN Exchange needed to undergo maintenance unexpectedly for two days. Some people in the ImproveCareNow Network probably noticed it more than others. I know that as someone who has come to rely on it to keep up with what centers are working on and looking at, I was keenly aware of its absence.  So you can imagine how thrilling it was when it came back online!

 

Now that the Exchange is back up and running (and better than ever - with plans and resources in place to prevent such outages in the future!) it occurs to me that even a quick glance at the Exchange clearly shows the richness, diversity, vibrancy—and the multifaceted dynamics of our community.

 

When I glanced at the Exchange today this is what I saw:

 

Children's Hospital of The King's Daughters' DIGMA model demo video from the Spring 2014 Learning SessionImproveCareNow centers, like Children's Hospital of The King's Daughters, jumping in and collaborating with parents, patients, and other centers to make sure that we are all learning together!
Call for clinicians to sign up for a focus group to dicuss what has worked and what hasn't worked when trying to get patients and families involved in QI work at ImproveCareNow centers.

 

Opportunities that highlight how much we really, really want and need to learn from each other so we can collaborate even better!

 

The first ever announcement for a ImproveCareNow Dietician webinar Multidisciplinary partners, like the RD group, are staying connected with each other and getting organized so they can The new online 90 day goals tracker for ImproveCareNow centers to track and monitor their Improvement project goals and progress quarterlytake on projects that will build their visibility and leadership in ImproveCareNow.

 

ImproveCareNow QI teams are becoming even more accountable and transparent in their day-to-day QI work.

 

The Parent Working Group of ImproveCareNow is now setting and working on 90 Day Goals and in the spirit of transparency is sharing them with the whole NetworkParent Partners are setting their 90 day goals, tracking their progress and keeping the Network informed!The Patient Advisory Council request to ImproveCareNow participants to co-produce an Ostomy Toolkit for patients with permenant or temporary ostomies.

 

And finally, amazing patients around the country are teaching us more and more every day.


 

And that is just a quick glance! So thank you to everyone who has been a part of helping us build this vibrant community. I, for one, can’t wait to see where the community goes next!



The ICN Exchange is an internal knowledge-sharing platform that the ImproveCareNow Network uses to communicate, collaborate and innovate across the miles. Clinicians, Researchers, Patients, Families and Improvers are able to log into the ICN Exchange and share seamlessly and steal shamelessly!  The ICN Exchange has enabled ImproveCareNow to extend our “all teach, all learn” collaborative approach to medicine far beyond our monthly webinars and twice-annual Learning Session. It allows us to identify ideas and best practices in pediatric IBD care and introduce them into the care delivery process much faster—improving care for our patients now.


27D

As the countdown to the ICN Strategic Planning Meeting dwindled, I began to pack my bag for my 30-hour trip to Washington DC. While I was truly excited to see my ICN family and my better half (cough cough, Sami), the summer heat pricked at my cheeks and I could already tell that I was worn out from working and my flare before my trip even began. But anyone who knows me will tell you that I’m incredibly (and sometimes stupidly) stubborn, and so I set my sights on Washington and boarded the plane.

 

Reuniting with Sami was wonderful! It did involve giving her the wrong directions to where I was standing at first – but we finally found one another in the airport and eventually made our way to the hotel. As an early birthday present, Sami had packed a ‘Twizzlers Party’ (note: my current flare leaves my diet restricted to only a few things, most notably Twizzlers and an assortment of candy). We dutifully ate the candy and caught up on life and all things gutsy - as good gutsy girls do.

 

Jennie with her bag of Twizzlers at the ImproveCareNow Strategic Planning Meeting Thursday morning found us up early, as the alarm went off playing a Taylor Swift melody (of course). We got ready and headed down to the beginning of the meeting, where a one pound bag of Twizzlers was waiting for us for a flare-friendly lunch (you know you’re loved when!). As always, Sami and I continued to be overcome with delight and excitement at how sincerely patients are considered and integrated into the strategic planning for the network. ICN truly wants to improve care this very moment for children and their families, but they know they need everyone’s input to do it. I think it’s fair to say that we’re all pretty thrilled with the exciting things that will continue to develop in the years to come.

 

But this post isn’t really about Washington DC or the ICN Strategic Planning meeting. It’s about being nearly 22, fresh out of college and into a ‘real person’ job, and very sick. It’s about my body not working the way I want it too and being simultaneously frustrated and determined. By the time I was ready to head back home, a mere 24ish hours after arriving, my body was throbbing with pain and the dryness of my mouth and quickened pace of my heartbeat informed me that I was quite dehydrated. The thought of the two plane rides home – getting into the airport at midnight and then having to get up early the next day for a doctor’s appointment and work – made me make my ‘this is ridiculous’ face. I just wanted to be home. Well, moreover, I just wanted to feel better.

 

On the flight from Toronto to Halifax, I found my aisle seat, 27D, where the window passenger was sitting with her multitude of bags. “Do you think there’s someone sitting in between us?” She asked, fumbling with her purse. I shrugged and offered a diplomatic response of uncertainty, suggesting she use an overhead bin to store some of her things. The pilot came over the PA to announce that the flight was totally full, every seat was taken, and to use space as wisely as possible. So much for some elbow room, I thought.

 

I sat and waited for the middle seat person to claim his or her seat. By this time the plane was largely full, and I was ready for every passing person to point to the seat and slither past me. And then she walked up to the row – she being Ellie Black, a Canadian Olympic gymnast who’s from Halifax. I sat up in my seat, suddenly my heart pounding not because of dehydration but because of my girl crush on this incredible athlete. She pointed to the seat and I jumped out of mine to let her in.

 

“I’m sorry,” I said. “But you are Ellie Black?” She nodded with a big smile. Of all of the Olympic athletes, I would recognize so few, but the fact that one sat next to me made me momentarily forget about my poorly working body and focus on her. She was kind and lovely and very sweet, happily chatting with me despite her 27+ hour plane journey home from Russia (where she’d been in a competition and taken home two medals). I sat there amazed, 1) that she was talking to me and 2) how incredibly resilient the body can be. It might not seem like it, given that I have no medals or Olympic memories of my own to share, but our bodies had something in common – they are super duper resilient. Hers might be able to do flips and turns while mine struggles with functioning, but ultimately both of our bodies can be pushed to do things most people don’t think is possible.Ellie Black the Olympic gymnast signed an autograph for Jennie David on her flight home to Halifax

 

When the plane finally touched down in Halifax, it was midnight and Ellie and I both blinked awake, having falling asleep mid-flight. I pulled out my agenda book and sheepishly asked her to autograph it, which she agreed to without hesitation, addressing it personally to me. In her script writing, she scrawled, ‘Dream Big’, and handed it back to me, smiling. I thanked her profusely and safely tucked the autograph back in my bag.

 

Maybe the airplane-gods thought I needed a little pick-me-up, or maybe it was just plain ol’ luck, but whatever it was, it reminded me that even if my body doesn’t work perfectly, I am still a champion, a fighter, and a resilient person. And now compliments of the heart-warming and inspirational words residing in the back of my planner, I can carry that message with me wherever I go.

 

Jennie


To Little Jennie

To my 12-year-old, newly diagnosed self:

Jennie David on the 4th of July just a couple months before being diagnosed with Crohn's disease

For a long time, you will regret your decision to tell your parents that you were hurting. You will wish you had kept the pain and the blood and the fear a secret so that you wouldn’t be different and sick.  You will wish it very much, using up your wishes on birthday cakes and fallen eyelashes. But first, let me tell you, you did the right thing and that not telling your parents would not have kept you from getting sick.

 


First and Last

There are evenings like tonight that I am sure I will remember in thirty years. There’s nothing remarkable about tonight, just a quiet evening at home, only it entails being forced to watch the school’s football field undergo a Cinderella transformation into my way-too-soon college graduation. And as such, I am overcome with a simultaneous sense of relief and panic – causing me to nearly freak out at the sight of the stage being built with a near “WAIT, I AM NOT READY TO LEAVE”. But alas, no one would hear me, so I will spare my neighbors the screaming.


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


Here We Go

As I was driving from Nova Scotia to Boston for school, I tried to think of the first day of classes my junior year. I was struggling trying to remember, and then it came to me: I didn’t go to the first day of classes because my body decided the ER was a better place to be. Nothing like starting off the year on the wrong foot.

 

I can summarize the fall semester of my junior year in one word: awful. I had the classes I wanted to take, everything moved in and meticulously set up in my room, a growing contingent of friends to explore the city with. But luckily for me (irony never gets old), I was entrenched in constant mechanical ileum bowel obstructions and ended up spending 2/3rds of the semester slightly (or okay mostly) drugged and trying desperately to figure out how to get better. And as I write this and think back to that time, it makes my stomach sore and also makes me want to have someone playing a violin in the corner as I recount my sob story. But instead I’ll just say this - that was a semester to survive, not one to enjoy.

 

For a long time I thought that every new school year had an obligation to set loose a varying kind of havoc on my body. Every year was something a little different, a little more challenging, a little more tiring. And before this post turns into a sappy, soap-opera worthy story-line, let me say this: this year is going to be different.

 

I’m (mostly) fixed, having discovered the etiology of my mechanical bowel obstructions (who knew yoga could be so dangerous!) and am absolutely elated to say that I haven’t had an obstruction since December (minus my obstruction in April, but hey I ate about 7 apples so that was my fault). It makes a world of difference having my body back and being able to do what I want. As my boss this summer said, ‘planning is important, plans are useless’ - aka nothing goes according to plan, but learning to swing with the punches and expect issues is the trick. I’m not naive enough to think I’ll be completely honky-dorey the entire semester, or that things won’t be bumpy, but I’m ready for what’s to come.

 

Here’s to the new school year. Here’s to new challenges. Here’s to resiliency, perseverance, and courage. Here’s to making new friends. Here’s to learning. Here’s to hoping the most stressful event of the semester will be an exam. Here’s to my senior year. Here’s to getting back up when you fall. Here’s to scars that remind me where I’ve been. Here’s to health and happiness and hope.

 

Here we go.

 

Jennie


On Top of the World

[slideshow]Two and a half months ago, I was in a hospital bed weeping. Surgery hadn’t gone as planned and suddenly the horrific semester I had just overcome seemed to loom before me. My heart felt like it had been split open, my dream from the summer of going to Peru seemed torn apart. Life was unfair and overwhelming and painful.

But if there’s anything I’ve learned, if you wait a few minutes, take in a big breath, and remember who you are, things become a little more possible.

So now, as I sit here writing this, I will try my very best to relay the amazement, wonder, joy, and peace of my recent trip to Peru. Warning: there truly are no words, so whichever I find will not do it justice.

First of all, the people were wonderful. There were ten of us including myself and the group was comfortable and hilarious, comforting and encouraging. We sang songs and joked and had serious times when we related stories of pain and discouragement. It was a group of people who had every reason to be bitter and angry and discontent with the world, but somehow there was so much joy.

We were broken in easily to the challenge that was steeped in front of us. After a couple of days of touring around Cusco, wrinkling noses at the cooked guinea pig, and grinning over adorable Peruvian children, we donned our backpacks (which seemed to get heavier everyday!) and took out our trekking poles. I’ve never been to South America before, but the sheer vastness of mountains and the glaciers standing triumphantly in the background, the laziness of the cows grazing in the fields, the rumbling of the river as it fell over itself - all of these sights and sounds I tried to commit to memory so I would never forget. It was, in a word, beautiful.

There are too many details to try to write down, too many things I will not be able to aptly describe. On the third - and hardest - day, we climbed to the peak (4200 m) to ‘Dead Woman’s Pass’. After climbing the ultimate StairMaster (thank you Incans), I climbed to the top of a big rock with a fellow young trekker. We looked down at the stairs, winding in the distance, saw the Incan irrigation chevrons carved into the landscape, and cheered for the trekkers behind us to make it to the top. There aren’t words - it was gorgeous and glorious and empowering and exciting. We sat there and breathed, inhaling and exhaling, unable to find words to articulate how our hearts were singing.

Even with the chilly nights wrapped in sleeping bags and the midnight journey to the bathroom tent with only a headlight, the trek came to an end way, way, way too fast. We reached the Sun Gate and took countless pictures, so proud of one another and the journey we had completed. I looked down at Machu Picchu, the postcard picture I had seen online so many times, and couldn’t mesh the real and surreal elements of the moment. I had made it. I was on the top of the world. And as happy and proud as I was, my heart ached that the trip was nearing an end and I would be leaving the people I had come to care about so dearly.

Besides crying as I left Peru, the most vivid memory I have at the end of the trip was the bus ride from the train back to Cusco. It was dark and everyone was tired and plugged into their iPods or falling asleep. The bus drove along, the lights of the surrounding towns twinkling. I was listening to my music, grinning at the joy of the occasional person who would break out into song or the laughter that would warm the bus. I closed my eyes so tight and promised to remember what it felt like to be there and wished the bus ride would last forever. If I close my eyes now and listen to my heartbeat I can still feel the sway of the bus and the hum of laughter and the peace that blanketed us all.

It was the best experience of my life, though I wish I could say that more eloquently. I am so happy to have been healthy enough to go, but now sad that it is over. But I know that there will be new challenges, new mountains, and new friends.

And when I get nostalgic and wish I was back on the trail, hiking steps and laughing, I’ll look at my pictures and smile, and close my eyes and be back in the bus, happy and whole and healthy.

Jennie


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