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As we prepare for #ICNLS

Fall 2014 ImproveCareNow Learning Session cover photoAs we prepare to bring together people from across the ImproveCareNow Network for our Fall 2014 Learning Session, I wanted to take a moment to share a few things with you.

Why we do what we do:





What's in store for Learning Session attendees: LS14F Final Agenda

And how can you join @improvecarenow and follow all the #icnls action on Twitter: 

If you are joining us at the Learning Session and will be tweeting, type your Twitter handle in the comments so we can be sure to follow you!

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The PAC is Ready for ICNLS! Are YOU?

It seems like just yesterday the Spring Learning Session was around the corner! We're just FOURTEEN DAYS away from the 2014 Fall Learning Session - can you believe it!? As usual, the Patient Advisory Council (PAC) is excited, thankful, and busy preparing for the opportunity to contribute to the LS. Once again, the PAC Leadership is gearing up for busy and productive collaborations and presentations, and this time, we get to personally introduce two new PAC Scholars - Isabelle Linguiti and Bianca Siedlaczek!

14 days to go, 3 incredible days in Chicago, 2 amazing new PAC Scholars, and 1 fantastic session. Are you not excited yet!?

PAC1 PAC representatives showing off their gutsy spirit at the Spring 2014 Learning Session!

Just in case you aren't bursting with gutsy energy yet, we wanted to give you a preview of what to expect from our two new Scholars. These young ladies are intelligent, creative, passionate, and spunky. We asked them to tell us (and YOU!) a little bit about themselves and their ideas:

Isabelle, 19, Philadelphia

"I’ve been frustrated with communication between patients and doctors because I feel like they can often turn stressful when we already have enough to deal with. Rather than sitting there with my frustrations, I feel like ImproveCareNow gives me the ability to do something to change that."

Favorite Candy: Dark Chocolate

If I could travel anywhere, I would go to....Iceland! That was my one wish, and I got to go!

In my free time, I like to....get creative and do art projects!

My role model is....my boss at CHOP. She herself has dealt with a lot with her health and is very successful. She wanted to help me succeed and has guided me every step of the way. She is very nice, and giving with her talent and time.

My ideas? "My vision for the Communications Task Force is to use it to create a program that allows patients to have a direct role in educating doctors on helpful listening and communication strategies when working with patients."

IMG_8076.a PAC members working hard at the Fall 2012 Learning Session (Back when we only needed half a table!)

Bianca, 15, Michigan

"I love that ImproveCareNow is more than just a collaborative effort between doctors and nurses; it involves patients, too!"

Favorite Candy: Sour Patch Kids

If I could travel anywhere, I would go to....Italy!

In my free time, I like to....take my dog on walks.

My role model is....my maternal grandpa. He is incredibly strong. He survived World War II before relocating from Italy to the United States and making a living for his family.

My Ideas? "Nurses have a lot of helpful knowledge and experience that would be helpful to PAC. Becoming more collaborative with the nurses of ICN can give the Advocacy taskforce another perspective for projects."


Hi, I’m Steve and I am a Hoosier.

Steve Steiner is a pediatric gastroenterologist, hoosier and cochair of the ICN Research Committee

For those of you unfamiliar with the term 'Hoosier', it is used to describe a native of Indiana. No one really knows who came up with it, but I do share the distinction with John Dillinger, James Dean, John Mellencamp, Michael Jackson, and David Letterman. My mother is a nurse, but there was never a doctor in our family until I graduated from med school.

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Introducing Jessi! Read her story.

In 1999, at my 2-month check-up my family learned I have Turner Syndrome. Before my 6th birthday I had ear tubes put in; tonsils and adenoids taken out; a tethered spinal cord released; my bladder and kidney tubes reconstructed, and was on daily growth hormone injections. I was regularly followed by an Endocrinologist, Urologist, Nephrologist, Allergist, Cardiologist, and the “team captain” my Pediatrician. Despite all of this, I didn’t look sick. People thought I was vibrant, brilliant, and basically a healthy, cute little Muppet.

 

I am the middle of three girls. My older sister had a prenatal stroke, resulting in right hemiplegia and seizures. My baby sister spent the first month of her life in the NICU but is very healthy now. All that is really just to say that my family has spent a lot of time in hospital waiting rooms.

 

During my 6th grade year, I missed a lot of school with complaints of pain and fatigue.  A normal check-up for my asthma ended with a “by the way, I’ve had a lot of stomach pain and some diarrhea…” This prompted a second look at my weight chart, which showed a drastic loss of 21 lbs. in less than 2 months. Blood tests showed I was severely anemic and Vitamin D deficient. And so, we added Dr. Moyer, my GI from NWPGI, to my list of specialists. A colonoscopy was ordered, then we waited to find out if my official diagnosis would be Crohn’s or ulcerative colitis (UC).

 

My family and I believe that the fact that I was on long term antibiotics for both kidney and ear infections may have contributed to the triggering of my UC. It’s also possible that my frequent doses of steroids to treat my asthma masked, or put off my UC symptoms. By my 13th birthday, I had gone from 113 lbs. to 72 lbs.; from a girl’s size 16 down to an 8/10! Several bad flares led to ER visits, hospital stays, IV’s, several rounds of steroids, and recommendations for Remicade.  For me, with compromised kidneys, and a bicuspid heart valve, (my only real health threats from Turner’s) biologic drugs like Remicade are quite scary and will only be a last resort.

 

Because of my health, my family and I decided on home schooling for 7th grade. My mom and I decided to try the Specific Carbohydrate Diet (SCD) in hopes of staying away from Remicade or other heavy drugs. I thrived doing online school, eating a SCD diet, and we began doing individual food challenge tests to identify foods I really have to avoid. We were able to slowly add back some ground corn, like gluten free corn chips, rice occasionally, and sweet potatoes (my favorite!) into my diet. My health leveled out with these adaptations and we believe the carbs helped metabolize my meds and make them work better. I feel so much better on a gluten and dairy free diet, and feel bad very quickly if I eat “wrong”. Even Portland’s famous Voodoo donuts are no longer tempting because I know what will happen if I eat one. I take my prescribed Azathioprine, Delsacol, and Allopurinol along with VSL-3 Probiotics, Iron, Vitamin D, Fish Oil, and Calcium, and have staved off the need for Remicade so far.

 

One year later, and I was back in full time public middle school. I was in my second play, walked a 5K, only missed 2 days of 8th grade due to UC, and graduated from middle school with the highest honors.

 

Jessi Erickson shares her story about living with Turner Syndrome and ulcerative colitisNow, I will be a sophomore in high school this fall. I pack my modified Paleo lunch to school every day and have a 504 medical plan that gives me clearance to leave class and access to the nearest restrooms whenever I need to go.

 

I am sensitive to stress, still on hormone therapy for Turner’s, and turn into a mean little hulk when weaning off of Prednisone. I have been able to avoid steroids for a long time now by carefully watching what I eat and not missing any meds.

 

In my spare time I write, read, sing, and practice archery, (Twitter, Tumbler, Pinterest, and Facebook too!) I want to be a writer and travel. My first stop will be Ireland! I have a big imagination, an even bigger heart (not in the enlarged, real medical sense) and am willing to help anyone I can, especially other kids who are dealing with IBD.  I want to help raise awareness that Turner’s girls have higher chances of having IBD. This is still news to many endocrinologists who diagnose Turner syndrome.


Hi, I'm Randa and this is my story.

Randa Samaha was diagnosed with ulcerative colitis at age 5I was diagnosed with ulcerative colitis (UC) at the age of 5. Or at least that’s when my doctors were finally able to figure out what had been going on for years. As a 5 year old I learned, in simple terms, that my body was “overreacting and attacking itself.”

 

 For the majority of my young life, I did not know what it was like to not be in pain. I lived with continuous pain and symptoms. I lived with urgencies and emergencies. I learned how to deal with accidents and embarrassments. I learned how to speak honestly and openly about my UC. And most importantly, I learned how to advocate for myself.

 

I believe living with UC has made me a stronger person, and for that, I am grateful. I am grateful for what it has taught me and for where it has taken me in life. Today, I am a nurse because I looked up to my health care team and I am a patient advocate because I want to empower others to recognize their strengths.

 

My wish is to help other children living with inflammatory bowel disease recognize how strong and unique they are. I wish to empower them with the tools they need to learn how to listen to their bodies and nurture their souls, allowing for healing to take place. I know from personal experience that even when everything seems chaotic and out of control, we as patients still have the power to make decisions and must resolve to hold our head high, remain positive, and live life to the fullest.


Hi, I'm Isabelle

When I was first diagnosed with Crohn’s at age 15, I had absolutely no idea what that meant. For the first three months after my diagnosis I thought the medicine I was taking would just make it go away. I can still remember the day I asked how much longer I would have to take the medicine. My doctor looked surprised and then told me most likely for the rest of my life. After that I still lived in ignorance, thinking that taking the medicine forever would keep me totally healthy. It took months of intense illness to rid me of that notion. That’s when I fell into a deep depression. Everything seemed out of control and scary, and all I knew was that the rest of my life was going to be filled with this pain.Isabelle Linguiti

 

Of course I was incredibly angry about having the disease, but what made me even angrier was that nobody ever explained to me how IBD is not curable but it can be manageable. Nobody ever told me that while I will have it for the rest of my life I wouldn’t necessarily be in this much pain or this debilitated for all of it. Nobody ever invited me to give input into my own care.

 

I am not someone who takes well to being left in the dark so I starting spending all of my time stuck in bed researching and learning everything there was to know about IBD and its treatments. I read every study I could find and started bringing my ideas to my doctors. It was so frustrating because at every turn it felt like we were in uncharted territory and they didn’t know what to do but they still weren’t turning to me for help figuring it out. My opinions about what course of treatment I should take continued to form and in time I became more assertive.

 

I pressed my doctors to allow me to get a g-tube placed, something they don’t generally use in Crohn’s patients. It was the right choice for me. Despite resistance or at least hesitance on the part of my doctors, it ended up preserving my health during many periods of acute illness. There are other examples but I just share the g-tube as an example of why the knowledge and feelings of a patient are so important to consider in the decision-making process. I knew what my body needed and I was right.

 

Obviously I’m not a doctor and I should not be unilaterally deciding on the care plan, but I know that if I had not been advocating for what I felt was right for me in my unique situation, I would not be anywhere near as healthy as I am now. Now I feel like I have a really great team-based approach with my doctors. I want everyone to have that and I don’t want anyone to have to fight as hard as I had to in order to make that happen. I don’t blame my doctors for their resistance. I think they’re great and I believe they really respect me but including a patient’s perspective in decision-making is simply not the way things are done - especially in pediatrics. In my opinion having informed patients and a collaborative relationship between patient and doctor is the best, and frankly the only road, to optimum health.


The Moment, Continued

I've spent two weeks now at Cincinnati Children's Hospital, partnering with ImproveCareNow colleagues here in developing opportunities for patient engagement. Yesterday, fellow PAC member Alex invited me to be present at an orientation for newly diagnosed IBD patients and their families. As I sat at the "staff" table, I was hit by a quiet wave of shock. It's been over six years since my diagnosis. Over six years.One moment, I looked at a girl of about fourteen in the audience and saw my younger self in her. At the same time, I know I've changed in meaningful and (then) unimaginable ways since my diagnosis.

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The Moment

Jennie at the Finish Line

I can, very clearly, recall the moment I realized I was a patient. There had been hints, of course: my Crohn’s diagnosis, lining up pill bottles on the counter, and my parents memorizing the GI nurse’s number. But I had obstinately protested, believing – if nothing else – that I wasn’t sick, I couldn’t possibly have a chronic illness, this was all just temporary. But after a few weeks, when the fall started to freeze into winter, the stark realization that the illness wasn’t going anywhere began to settle in. And then, during an appointment, my GI gently nudged a piece of paper towards me with the name and email address of “another girl like me,” meaning another pediatric patient. Finally it hit me square between the eyes – I had a chronic illness, I was going to be a patient forever, there were others “like me.”

 

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Hello Andrew

Andrew Kornfeld surfing at ocean beach in San FranciscoIt was the spring of 2007, and I was finishing up my junior year of high school. It had been the hardest year of my life with classes becoming increasingly more difficult and a mysterious illness plaguing my body.  With daily diarrhea, debilitating stomach cramping, anemia, and other severe problems (which I will spare you from) it became clear that something was seriously wrong –– it was more than just the gluten sensitivity and irritable bowel syndrome I was previously diagnosed with.  My illness was at a tipping point and my quality of life had decreased dramatically.

 

I was finally given a colonoscopy and subsequently my mystery was solved: I had moderate to severe Crohn’s colitis.  While I remember feeling relieved to finally have a diagnosis, I was also extremely disappointed that it had taken nearly a year. How much needless suffering had I endured?  Soon after my diagnosis and one failed surgery later, I made the transition to the UCSF pediatric IBD clinic with Dr. Mel Heyman. This may have been the most important decision of my life. Dr. Heyman, along with Laura, the nurse practitioner and a team of other medical professionals, identified the right medications for me, referred me to an exemplary surgeon at UCSF and ordered additional tests. Over the following months, the substantial decrease in my symptoms was nothing short of miraculous. To me it felt like being released from a confining and painful space, into one that was warm and safe.

 

Over the years, I have felt truly empowered by the team at UCSF to take an active role in the treatment of my illness. Some of the modifications I’ve introduced into my care plan have involved: a gluten and dairy free diet, the intake of potent probiotics, and getting plenty of exercise. I am an avid surfer, and feel really energized by the rough waves at Ocean Beach here in San Francisco. I have also recently become interested in how psychological stress may negatively impact patients with IBD, and would like to investigate this further. I am grateful beyond words to have had Dr. Heyman as my pediatrician and to be currently volunteering my time as part of the UCSF IBD team.

 

Andrew Kornfeld Andrew graduated from the University of California, Santa Cruz with majors in Neuroscience and Psychology. He is currently volunteering with the UCSF IBD clinic, and plans to attend medical school starting in the fall of 2015.


Some Time With My (Gutless) Friend

I had the pleasure of picking up a friend at the airport a few months ago. She had flown in, carefree and light on luggage (literally one 5 X 7 envelope contained everything she brought, including her bedding), to spend some time with me, my curious wife, and my even-more-curious daughters. She had also come to root around in my office and make new friends at the hospital where I work – OU Children’s. I loved showing her my cool office, the gizmos we have to help our patients learn and have a good time, and the terrific staff and providers that see our patients on a regular basis.

I was amazed to see, when I picked her up, that she was wide-eyed and ready to go. She had her arms up, food and drink in hand, and was ready for anything! Her spirit was catching; my daughters were immediately enthralled and showed her around our house, where she stayed at night, after going with me to the hospital each day.

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