ImproveCareNow Ibd


Notes from the Field - The ICN Engagement Campaign

What does an engagement campaign have to do with a healthcare quality improvement network? ImproveCareNow leaders were wondering the exact same thing before we began learning from our friends at 270 Strategies (experts in both political and issue campaigns!) Their team is teaching us how to apply successful campaign strategies to engage a large and diverse community of people in helping kids with IBD get better, now. Quite simply, ImproveCareNow invites clinicians, parents, patients, researchers, and others to learn about our work and to lend their time, talents, and expertise so together we can learn and find innovative new ways to outsmart IBD. And right now we’re learning how to make it easy for everyone to connect with ImproveCareNow in the ways that work best for them and ensure we can harness and value each person’s unique and generous contributions - making it meaningful and rewarding to be a part of our community.

ICN is made up of many faces. This slide shows a just a few of them.In ImproveCareNow we always start with a small test. To that end six of our centers are diving in as campaign pilot centers. Cincinnati Children’s Hospital Medical Center, Children’s Mercy Hospital, Children’s Hospital of the King’s Daughters, Children’s Hospital of Philadelphia, Levine Children’s Hospital, and the University of Michigan CS Mott Children’s Hospital are getting some training, rolling up their sleeves, and re-framing what an ICN IBD team looks and feels like. You will hear more about their journeys in the coming months as they build momentum and start sharing what they have learned with the rest of the community. In the meantime, we wanted to highlight some of the work underway in the early days of the campaign so that you can begin to learn with us now:

Snowflakes and ImproveCareNow


Campaign pilot centers are beginning to reframe their ICN teams with the “snowflake model” in mind. The snowflake model is a way of organizing people that decentralizes leadership and increases two-way communication. Basically it makes it easier for everyone to share the work and contribute to the success. These centers have found that creating a snowflake does not necessarily mean more work for the existing team, rather, it often involves reassigning people in ways that make it easier to get existing work done more efficiently.

This slide shows a diagram of what a snowflake staffing model would look like at an ICN Care Center.

“Hard ask?” – that sounds hard!


As part of their training, the participating centers are learning that it’s OK to be really direct about what they need from potential partners. It is lot easier to say no when the ask is soft and non-specific. So rather than saying “Umm…I was thinking maybe you could help us out somehow in the next few months,” they are looking for ways to be very concrete when asking for help, “Please come to our QI meeting next Tuesday. We really need your input on our new diagnosis process.” Coordinator Cori Davis tweeted about her first hard ask. The answer was YES!

Everyone’s story matters, and is important, and can change someone else's story.


More than ever, we are seeing how stories are key to helping potential partners understand what ImproveCareNow is all about and how they can fill important gaps in the community. Our Spring Community Conference is just around the corner and we are seeing some inspiring stories as part of the pre-work, stories that make very clear just how much our Network attracts those who want to join in and become a part of our success.

Elizabeth Monti shares her ICN story.

What this means to patients and families.


We know that growing our community will only make us stronger…indeed, the theme of our Spring Community Conference is “Strength in Our Numbers”! In her beautifully written LOOP post ‘Breaking a Promise’ Sami Kennedy really drove this point home. She reminded us why being part of ImproveCareNow is important and empowering for individuals, just as it is important to the whole community. As she says, “I have been welcomed into an environment where I am encouraged to not only sit at the table, but also to stand up and address the whole room.” Sami and Jennie

Meanwhile, we still have a lot to learn.


As the campaign unfolds, the ImproveCareNow leadership team knows it has an enormous responsibility to continue to ensure the network’s success, and to help develop a system that offers tools and opportunities for co-producing health and real partnerships. And we will be the first to admit, we have a lot to learn! We need your input as we go. We want to have open, transparent discussions about the challenges and opportunities ahead so we hope to engage more of you on twitter and other social media venues to take part in an ongoing dialogue between Community Conferences and webinars. You can follow @myers3411, @michaelseid11, @PeterAMargolis, and @improvecarenow on twitter and weigh in with your feedback and concerns as we build a bigger, better community together.

Sarah Myers tweets about the work of co-producing the conference agenda for the Spring 2015 Community Conference (#ICNCC15S)


Breaking a Promise

When Jennie and I applied to represent the Patient Advisory Council for ImproveCareNow as PAC Scholars in 2012, we were asked to each write an essay on our expectations and goals. I read mine over in December before I jumped on a plane to Orlando - more on that later.

I wrote in my essay, way back in 2012, a list of promises I would keep if I could just please go to a Learning Session. Paramount on that list was this: "I will listen more than I will speak." Because that's what patients do, right? I had the distinct feeling that I would be an intruder in a place where patients don't belong - and let me be clear that no one in ImproveCareNow made me feel this way; my stereotyped idea of what it meant to be a patient did.

"I will listen more than I will speak." This was my perception: it was okay for patients to sit at the table. To sit, to listen, but to speak? How could I? I was nineteen. I was a patient. What could I possibly have to share?

There is a time for listening, absolutely. But there is also a time for speaking - for all to speak. I had no concept of that as a young patient. I couldn't imagine myself having any sort of expertise that would help improve the healthcare system, even as I navigated it constantly. I figured I'd be there as an observer, to bring back insights to share with other patients about ImproveCareNow's work to help kids recover from, and more so, avoid flares of their IBD. Observer is the word I would have chosen to describe my responsibilities there.

IMG_2301 PAC Co-Chairs, then PAC Scholars, Jennie David (left) and Sami Kennedy (right) at their first ImproveCareNow Learning Session, October 2012.

Since my first Learning Session in the fall of 2012, I have been to five more. At each of them I have listened with a tape recorder running in my mind every second of every day, but I have also come home with a hoarse voice. Observer? No. I am so much more. No one at the Learning Session is just an observer - whether a long-time veteran or a special guest. Look at the buzz generated on Twitter (while you're at it, check out #icncc15s!) if you don't believe me.

I love to tell the story from my second Learning Session. To give you some context I am still nineteen here, and I've never before presented anything, anywhere, outside of a classroom. I was involved in a Q&A after a presentation I co-led with a physician and psychologist on medication adherence. A psychologist, physician, and patient together giving a presentation - I couldn't have imagined that just six months earlier! A physician in the audience posed a question to me regarding how I felt adherence could be effectively encouraged in patients my age. I gave my best answer, and he responded with his opinion based on his experiences, which happened not to be congruent with mine. We conversed for a few minutes; others chimed in. It was fascinating, thrilling, magical; I don't know if I can point to a better real-life definition of active collaboration.

After the session, this same physician hurried up to me at the podium. "I'm sorry," he said.

Wait, he said what?!

"I'm sorry," he said.

I asked him to clarify, very confused, and he explained that he worried he had made me uncomfortable by challenging my opinion as a patient. In fact, he had done just the opposite. This was my ImproveCareNow "lightbulb" moment.

Screen shot 2013-10-25 at 2.42.09 PM Sami (left) with former PAC Chair Jill (right) and ImproveCareNow project coordinator Molly (center) at the Spring 2013 Learning Session.

I have been asked countless times: how did you become who you are, a young patient leader? How do we get our patients to be like you? I am not sure this is the question we should be asking - because it assumes I am extraordinary. I know I am different; I have done things few other patients my age have - but it is not me that is extraordinary. I have been welcomed into an environment where I am encouraged to not only sit at the table, but also to stand up and address the whole room.

ImproveCareNow is an extraordinary community - a community with an ever-growing number of parents and patients being handed the mic - being asked to do things that were never before possible. This physician hadn't made me uncomfortable, no, not at all - he had made me comfortable. Our conversation erased all doubt from my mind that I was there for show; I was there for the same reason as him.

I wish I could convey to you how incredible that felt - and how sad I feel in retrospect that feeling included, truly included, had to feel incredible because it was so unusual.

I told that very story twice in 2014 to two very amazing audiences - first, to executives from the Robert Wood Johnson Foundation and, second, to healthcare leaders and learners at the Institute for Healthcare Improvement National Forum - the reason I took that flight to Orlando. I presented the Patient Advisory Council to each and, in each case, asked them to imagine collaborating with patients. I told them about the promise I made before my very first Learning Session, and how I have broken it over and over again.

IHI Conference Dec 9 2014 - Sami presentation photo Sami presenting the PAC at the Institute for Healthcare Improvement National Forum in December 2014.

There is a time for listening, and there is a time for speaking. For all to speak, and all to listen.

I found out in the fall I've been accepted to medical school, and I'm still trying to figure out what it will mean for me to be both a patient advocate and a medical student. But here is what I do know: I can't really imagine myself practicing in a system without ImproveCareNow and networks like it that I hope will be just as successful for other conditions. I want to be a physician who makes my younger self proud. One who doesn't just repair broken things, but creates things that are better. One who is brave enough to say and show that everyone has expertise, taking patient and family engagement to the places ImproveCareNow has, where it can be frightening to go. I see networks following in the footsteps of ImproveCareNow as the foundation of how I hope to practice - and how I have to practice. This is not only creating health for kids with IBD; this is making the whole system healthier.

Of course I am scared as I figure out a new set of expectations - but, this time, I don't expect to be silent.


#ICNCC15S

https://twitter.com/Sarituno/status/560137404838051840


The future of IBD research is in your hands

ImproveCareNow has partnered with Patient PrioritiesThe goal of medical research is to find answers that will improve the lives of patients. But how can we be sure the answers really matter if we don’t ask patients what they want and need to know?

ImproveCareNow is committed to supporting research that represents patient and family perspectives. As part of our funding from the Patient Centered Outcomes Research Institute and the US Agency for Healthcare Research and Quality, we are working with leading health care researchers from Children's Hospital of Philadelphia, Katherine Bevans, PhD and Chris Forrest, MD, PhD (selected publications by Dr. Forrest) to use new ways to engage everyone in the IBD community in setting our direction for learning. They have created a website called Patient Priorities to find out what YOU want and need to know about Crohn’s disease and ulcerative colitis (IBD). You don’t need any research experience to participate.

You will be asked to recall moments during your/your child’s diagnosis and/or treatment when you wanted more information, or had questions that were not answered. Maybe you had questions when comparing two treatment options, or making the decision to end a particular treatment. Any difficult moment when you needed more clarity and information is important for researchers to know about.

Responses to the 10-minute survey are anonymous and will be grouped with many other responses to develop a list of “Learning Objectives.”  Some Learning Objectives may be answered using existing research. Where there is good research to answer common questions, ImproveCareNow will be making more tools and resources for families available through care centers and in our online communities: Facebook, Twitter, here on LOOP, CIRCLE, the ICN Exchange and Smart Patients. Those Learning Objectives that are unanswered and require more research will be added to the ImproveCareNow research agenda.

We’ve heard from many patients with IBD and their parents. It would be great to hear from many more to be sure the Learning Objectives really represent a wide variety of experiences.

Here’s your survey: http://bit.ly/lrnobjs

This is an important opportunity for us to shape the future of IBD research. We will be sharing our results and what we’ve learned along the way, so you can see how we’re outsmarting IBD together.


We're all in this together.

Sarah Myers is the Executive Improvement Director for ImproveCareNowA few months back I wrote about the importance of stories as we work together to improve care for  kids with Crohn’s disease and ulcerative colitis. And what a wonderful collection of stories we are building! But we also know that data and measurable outcomes (like % of kids in remission, and % of kids NOT taking steroids) are really important too. One of the most important tools ImproveCareNow (ICN) teams use is called 90-day goals.

 

90-day goals are meant to ground and shape teams’ quality improvement (QI) work. Teams use QI to see where the gaps are in the care they deliver to each patient, and all patients, they see with IBD, and figure out the best ways to close those gaps (or make real improvements in care and outcomes). These goals also provide a rallying point for team members, keeping them aligned, focused, and motivated. Done well, 90-day goals are incredibly motivating and help the team strive to achieve big things together, while also honing in on the individual (sometimes nebulous) ideas for improvement. In QI it is always important to refine your goal or aim into something specific, measurable, (hopefully) achievable, realistic, and time-bound (SMART).

 

I have been reflecting on the diverse goals that ICN teams set for the last quarter of 2014. I want to share some of my favorites - and give you a little snapshot of the work that is going on across the Network. Whether new to the Network or having years of experience with collaborative quality improvement, ICN centers are working to create systems that are sustainable and manageable, to better understand the needs of individual patients and groups of patients, and of course to get more patients into remission and keep them there.

 

A brand new center: “We will register 70 patients total (50% of our estimated eligible population).” This reflects an important focus on the basics—getting patients into the ICN registry so they can benefit from the tools available to learn from their data and make related improvements in care.

 

A team that is gaining momentum after about six months of participation in ImproveCareNow: “Each faculty will review a Pre-Visit Plan on at least 25% of their IBD patients.” This center has worked hard to get patients into the ImproveCareNow registry. They are now ready to focus becoming a proactive, prepared practice team—assessing the needs of patients prior to visits. They are starting small so that they can test different changes and learn as they go…before spreading to even more patients.

 

A “veteran” team aiming to make sure that patients transitioning to adult care are prepared for that major milestone:By December 31, 2014, we will achieve…20% increase in patients 16-18 years old with a transition plan.” This center knows that transition to adult care is so much more than just making a referral to an adult physician. They want to know that their patients have the knowledge, skills, and tools they need to navigate that journey.

 

And a team that has already achieved an impressive 80% remission rate, pushing to see how high they can go: “By December 31 2014, the remission rate will  consistently be 85% two of the three months of the quarter.” This center has built a reliable, proactive, and patient-centered system. They and others are setting a new bar for the outcomes that are possible when all members—patients, parents, clinicians, and improvers—work together!

 

It can be hard to explain what a complex system like ImproveCareNow is all about. There are a lot of moving parts! After all, we can all agree health care is very complex! As a leader in this network, I know we often talk about the big innovations, the patient stories, and the work we do to keep this community connected across the miles. But these individual goals give a real concrete look at part of the foundation of this network’s success. The day-to-day, on-the-ground work that goes on at 71 (and counting!) ICN care centers across the US and UK.

 

It’s important to point out that the goals of brand new teams, which focus on ensuring every patient with IBD is included in the ImproveCareNow registry and that data is 100% complete and accurate,  are no less important than the goals of more experienced teams. Once a solid foundation for improvement is laid, teams are able to focus on achieving even better outcomes (like higher remission rates). It is a continuum—a journey that all centers begin when they join ImproveCareNow. And as a Network that encourages “seamless sharing and shameless stealing,” none of the centers are working toward these goals alone. Experienced teams become mentors and coaches for newer teams even as they work toward their own goals.  And newer teams are able to go further, faster because we’re all in this together.

 

Thank you to the ImproveCareNow teams for another amazing set of goals. We can’t wait to see what you achieve together!

 

[Editor's note: Ask your care team about their ImproveCareNow goals next time you're in clinic.They'd be glad to share! Not sure if you're at an ICN center, find out here.]


The Story of Empowered by Kids

Justin Vandergrift is a co-founder of Empowered by KidsJustin Vandergrift believes when you’re meant to do something, doors will open. But you have to be there when the doorbell rings. You have to open that door. And Justin has opened a lot of doors in his life. He runs multiple companies, volunteers at Levine Children’s Hospital, and has made it his mission to deliver hope and inspiration, information and empowerment to families (just like his) living with a chronic illness – like Crohn’s disease, which his daughter Kathryn has

Crohn’s disease, along with ulcerative colitis, is also known as Inflammatory Bowel Disease or IBD.

I asked Justin to share the story of Empowered by Kids (EBK), the non-profit he co-founded with two other parents (Tania Moon and Julia Ament-Cox), to fast-track the delivery of hope, inspiration, information and empowerment where it’s needed most.

The story begins with an ImproveCareNow (ICN) Learning Session and a greeting card.

At his first Learning Session, Justin remembers Mary Jones from Texas Children’s sharing how she designed a card and filled it with greetings from patients and hand-delivered it to kids with IBD staying on the inpatient floor. It was a huge success.

Justin loved the idea, so he partnered with an aspiring artist and pediatric IBD patient back at Levine to design a card and then filled it with greetings from patients. He printed the cards and added them to the inpatient care kits the Levine support group put together. The response was amazing!



“I remember our Social Worker telling me the cards were the very best part of the care kits!”

 

Building on the success of the greeting cards, Justin and the ICN Parent Working Group hatched a plan for a “Book of Hope” - a collection of stories and greetings from parents and patients with IBD, designed to deliver hope well beyond the walls of a single hospital. Enthusiasm for the project was overwhelming! But it was not clear how to pay for it and what the legal implications might be. Sensing the door closing, Justin turned toward the next.

For his birthday, he wished for nothing more than the support of family and friends, and was overwhelmed by their generosity. Recognizing this as the opportunity to bring Book of Hope to life, he teamed up with Tania Moon and Julia Ament-Cox, whom he had been working closely with on the project, and EBK was born.

 

EBK logo

 

In six short weeks, the trio established EBK as a 501c3 non-profit, launched a website, laid out stories from 25 parents and patients with IBD in the first edition of the Book of Hope, and printed 10,000 copies.

They arrived at the Fall 2013 Learning Session with hope in hand, and blew everyone away as they unveiled the Book of Hope and invited ICN care centers to order as many copies as they needed (free of charge) to give to all patients and families with IBD across the network. Today, Justin estimates over 60% of ICN centers have the Book of Hope in stock. And it is always available for free download online here.

The Book of Hope, like everything EBK creates and shares, is designed for parents and patients, by parents and patients. Everyone at EBK has lived through chronic illness diagnosis, and is still on the journey. Their goal is to make it just a little bit easier for those that come after them by sharing tools and information that empower patients and parents to ask good questions and make good decisions; by providing hope and inspiration as a constant reminder that no one is in this alone; and by bringing together a community of people who will continue to support, inspire, educate and empower one another.

Ding Dong…Ding Dong…

Do you hear that? It’s a doorbell ringing. Go ahead open the door. Connect with EBK. They’ve been waiting for you! Here are a few ways to connect:

 

M Troy Tweet EBK

 

In case you’re wondering, Justin still listens for the doorbell. Here’s a sneak peek at some of the EBK doors that will be opening soon.

  • Hope on Demand, an iOS app delivering hope to your apple device
  • Hypoplastic Left Heart Syndrome Book of Hope - Winter 2014
  • EBK IBD Podcasts, combining ICN center highlights, opportunities and best practices

 


I wish I knew _______ about IBD.

Speak out. Tell ImproveCareNow what IBD questions need to be answered.


What do you wish you knew about Crohn's disease or ulcerative colitis? Do you have questions about diagnosis or treatment options? What about daily management of IBD? Maybe you've wondered if a certain drug or lifestyle change would help. These are important questions! The answers could have an incredible impact on your life, the life of your child, the lives of many patients living with IBD.

ImproveCareNow is ready to answer your important questions – but we need you to tell us what they are!


Patient Priorities IBD Learning Priorities ProjectTeens and young adults with IBD, and their parents and clinicians are invited to participate in the IBD Learning Priorities Project - a study being conducted in partnership with Patient Priorities. Participants will be asked to share questions and concerns about IBD, and it's treatment, management, etc. in a confidential survey. The results will be used to create a list of the top learning objectives for ImproveCareNow to focus on.

Speak out! Tell us what you need to know. Go to patientpriorities.com to complete your brief survey, now.


Brain Science, Stress and IBD

When I was diagnosed with moderate to severe Crohn’s disease 7 years ago, I wanted a simple and straightforward “cure all” treatment. To my dismay, I learned that relying on one silver bullet drug, would not suffice. Controlling this disease was like trying to tame a wild animal and would require balancing many factors. I became attuned to how psychological stress and poor diet negatively affected my symptoms. With a careful combination of transient targeted steroids, immunomodulatory drugs, vigorous exercise, and lifestyle changes, I regained my ability to thrive. I returned to my former state of athleticism, regularly tackling the intense and unforgiving northern California waves with my surfboard.Andrew and his surfboard getting ready to tackle the northern California waves

 

I soon entered the University of California, Santa Cruz’s neuroscience and psychology programs. While I was intensely focused on my academics and extracurriculars, the foundational nature of the human brain became seemingly more important. Comprised of approximately eighty billion neurons or brain cells, the vast intricacy of this three pound organ is extraordinary: The relationships or “connections” between these neurons –– called synapses –– outnumber the stars in our home galaxy. These small spaces are in actuality busy microcosms of information transfer between neurons. Minute chemical messengers called neurotransmitters serve as the communicational media. It is widely believed that the way in which brain cells are connected and their chemistry determines our psychological state.

 

An image of a neuron

 

I took note: under times of intense pressure or stress my physical symptoms manifested. Was this just a mere coincidence? Or was there really something going on? With a neuroscientific lens, I investigated.

 

I found that the connection between the brain and body and its interactions in disease are well-recognized by the scientific community.1 Modern day stress is seemingly connected to our most primal of reactions – activating a “fight or flight” response – that would be more useful to us in prehistoric times in our interactions with predation. A stress hormone called Cortisol serves to direct our body’s resources (in the form of glucose) away from non-vital functions like digestion and immune activity. For this reason, scientists believe that prolonged stress plays a pivotal part in a myriad of autoimmune conditions.

 

The extent to which psychological states influence the disease progression of IBD is still somewhat unclear. Numerous studies and review articles, however, suggest that these psychological states play a role in both direct disease progression and how patients deal and cope with their disease. 2, 3, 4, 5

 

Reducing stress is just one of many changes that help me live with Crohn’s Disease. Further, just as important is staying informed and imaginative. This blog and the entire ImproveCareNow community represent a beautiful medium for these concepts to flourish. Thank you for your part in this community.

 

References:




    1. Sternberg E, Gold P. The Mind-Body Interaction in Disease. Scientific American Special Edition. 2002:82-9.




    1. Mawdsley JE, Rampton DS. Psychological stress in IBD: new insights into pathogenic and therapeutic implications. Gut. 2005;54(10):1481-91.




    1. Mikocka-Walus AA, Gordon AL, Stewart BJ, Andrews JM. A magic pill? A qualitative analysis of patients' views on the role of antidepressant therapy in inflammatory bowel disease (IBD). BMC Gastroenterol. 2012;12:93.




    1. Peters S, Grunwald N, Remmele P, et al. Chronic psychosocial stress increases the risk for inflammation-related colon carcinogenesis in male mice. Stress. 2012;15(4):403-15.




    1. Sajadinejad MS, Asgari K, Molavi H, et al. Psychological issues in inflammatory bowel disease: an overview. Gastroenterol Res Pract. 2012;2012:106502.

 


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.


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.


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