ImproveCareNow Remission


My diagnosis experience taught me it’s OK to seek help from others

My name is Jake and I’m a senior in high school. I was diagnosed with Crohn's disease in the fall of my junior year. One interesting thing about me is that one day I decided to take up running, so I signed up for the Atlanta marathon. After only a month of training I completed the marathon - this made me really fall in love with the sport!


A Journey to Sustain Remission

My son was diagnosed with ulcerative colitis in 2014, at the age of 13. Fast forward to 2018, and I am thrilled that he is in remission and a thriving 11th grader juggling AP classes, SATs, extra-curricular activities, college tours, and yes, medication adherence. However, I’m also here to tell you, it has been a journey to achieve and sustain remission. Like so many of you, my mind raced with a litany of questions for days, weeks, and months after his diagnosis…IBD? Ulcerative colitis? What? No cure? How did my son get this? Next, guilt set in and then more questions…Why had I not heard about IBD before his diagnosis? Is this genetic? Was it the foods I prepared? Could I have prevented it? I was so distraught. I could not fix this, not this time.


Remission, I am coming for you

"Remission." – the word many living with a chronic illness hope to hear one day. Remission is such a wonderful time of less symptoms and less doctors, but as many of us know, remission doesn't always last forever.

Since being diagnosed with Crohn's disease eight years ago I have only been in remission once, for about a year and a half. It was like coming up for a breath of fresh air. I was being drowned by Crohn's. And while a year and a half totally seems like a long time, it really wasn't. In nearly the blink of an eye, I fell out of remission and began fighting the most brutal flare I have ever known.


The PAC Tweets #ICNCC15s

A record seven gutsy patient advocates in ICN's Patient Advisory Council - PAC, "pack" - attended the Community Conference. We tweeted live at #ICNCC15s all the way through - so please check out our feed!!

The Patient Voice is already strong on Twitter. For a week leading up to the conference, Alex, Bianca, Christian, Isabelle, Jennie, Randa, and I tweeted once a day to provide a glimpse into how IBD factors (or does not factor, in some cases) into our days. We made special reference to the key drivers of remission took center stage at the Community Conference and form the foundation of ImproveCareNow's work:

7 Key Drivers of Remission



Jennie described challenges that impede her access to and communication with her doctor.

Screen Shot 2015-03-26 at 11.30.29 AMRanda described how proactive care allowed her to take better control of her ulcerative colitis.

Screen Shot 2015-03-26 at 11.18.23 AM Alex questioned why it can be so hard to find the right medication - and shared his optimism that more accurate diagnoses and research can change the game!

Screen Shot 2015-03-26 at 11.17.49 AM

Bianca shared how less-than-optimal nutritional intake has impacted her - and made it difficult for her to grow at the same rate as her peers.

Screen Shot 2015-03-26 at 11.27.27 AM Isabelle emphasized the relevance of compassionate care to psychosocial health.

Screen Shot 2015-03-26 at 11.31.39 AMFinally, Christian described how a food journal has improved his ability to self-manage his IBD.

Screen Shot 2015-03-26 at 11.11.38 AMAnd, I shared how my pill case makes it easier for me to stay adherent at college and on-the-go!

Screen Shot 2015-03-26 at 11.34.53 AM We hope you'll join the conversation on Twitter now and in the future!

 


Enough is Enough

One of the biggest challenges for a patient and their family is dealing with insurance companies. While insurance companies help families pay for medical care, sometimes it feels like they deny coverage of medications and other treatments for purely financial reasons. A patient is not a number on a page, they are a person with a personality and feelings. Patients with IBD and patients with any other chronic disease suffer. They try to live a normal life while dealing with symptoms; and with the right treatment, they find something that hints at normalcy. When an insurance company denies coverage, patients face the stress of no longer having a treatment that makes them feel better. And the unnecessary stress could cause their disease to get worse.

 


Enteral Therapy as a treatment for Crohn's disease


[Editor's note: This article was originally published in CIRCLE May-June 2013]


Enteral therapy refers to providing nutrition as a formula rather than by eating a regular diet. Enteral therapy has been shown to be effective in inducing, and perhaps maintaining, remission for pediatric patients with Crohn's disease. Enteral therapy does not have the side effects seen with drug treatment, and can improve growth, unlike corticosteroids, which have many known side effects. Although used very little in the United States, enteral therapy is commonly used abroad, including many European countries and Japan.


Over the years, several methods of administering enteral therapy have been evaluated, leading to variation in treatment. In 2012, the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) formed the Enteral Nutrition Working Group to review the use of enteral nutrition therapy in pediatric Crohn's disease, which summarized previous research and offered recommendations for physicians.


Drinking FormulaHistorically, enteral therapy was given through a feeding tube, and this is still done at many centers. However, drinking the formula is also an effective option. Studies have used both specialized nutrition formulas (in which the protein has been broken down to into smaller pieces) and non-prescription over-the-counter formulas (in which protein is not broken down). Both approaches appear to be equally effective, an important finding since over-the-counter formulas taste better and are less expensive.


The majority of the research has shown that enteral therapy is effective when taken as the sole source of nutrition (that means the patient can't eat any food), and this approach was recommended by the NASPGHAN Enteral Nutrition Working Group. However, recently a study published by Children's Hospital of Philadelphia showed that enteral therapy protocol is still effective when a small amount of food (less than 20% of the calories) is taken at the same time.


The way enteral therapy works is unclear. Theories include that it may help to provide the body with important nutrients and better overall nutrition, eliminate an unknown dietary substance that causes an immune response, or alter the bacteria found in the intestines.


A perceived barrier to enteral therapy is that the treatment may be demanding for physicians, families, and patients. For example it may be difficult to start, expensive, create a need for a feeding tube, or be displeasing to patients. Nationwide Children's Hospital is developing and testing a simple enteral therapy protocol which could be started very quickly and could be used at other GI centers. They plan to work with families and patients to reduce the perceived barriers via education on cost issues and payment options, and by developing a mentoring program. If successful, the protocol could significantly decrease the number of newly diagnosed patients with Crohn's disease who are initially treated with corticosteroids. Stay tuned.


Jen Smith, MS, RD, LD, LMT, Clinical Dietitian
Nationwide Children's Hospital, Columbus, Ohio




Parents as partners in care

One of the joys of working with the ImproveCareNow Network is seeing the results of co-production introduced more broadly to a learning community. At the same time, communicating what this is all about can be tricky – the idea that patients and clinicians can actually be partners (in health, care, improvement, and research) - is such a paradigm shift.  In fomenting this culture change, we have come to a deep appreciation of story-telling, art, and other creative expression as a powerful way of communicating beyond the hard data. That's why it's so breathtaking when we see this come along:


https://twitter.com/michaelseid11/status/448458248627027969

Justin, who made this video, is a parent in the ImproveCareNow network.  Collaborating with other parents and with some (minor) input from ImproveCareNow staff, he distills, in less than 90 seconds, this movement to its essence so much better than my feeble words could do.


Why?

Why?

I ask myself this question as I cry at night.

Why is my child sick?  Why has he been diagnosed with this disease?  Why so young?

Why?   

I ask his doctor this question at his appointment.

Why does it not get better with treatment?  Why so many medicines? Why surgery?

Why?

I ask this question to God as I pray.

Why does this child suffer like this?  Why does he have this cross to carry? Why him?

Why?

No one will ever forget the day that their child was diagnosed with Crohn’s disease or Ulcerative colitis.  From that point on, everything becomes “before and after.”  When you have a sick child, all else seems to stop.  Your world, your life, your very being centers around helping him or her; all else falls to the side.  At least it did in our home when Jimmy was diagnosed.

My name is Liz.  My husband, Jason, and I have three sons.  Our youngest son, Jimmy, was diagnosed with UC in October of his kindergarten year.  We had a very rough year and a half trying to get him into remission.  Currently, he is a happy, healthy eight year old with the help of Humira.

Now our goal is to build up what was lost during those years of active disease.  We are checking off delayed milestones – riding a two wheeler, trying sports, as well as physical milestones like delayed growth and loss of those precious front teeth.  These diseases affect the whole person and the whole family in ways it is hard for those who have not lived it to comprehend.  It is our role as parents to help shift the focus off of why and onto how - how do we build up our children?

In October 2013 I attended my third ImproveCareNow Learning Session as the parent representative for Riley Hospital for Children.  It is the development of these “how’s” that inspired me to get involved with ImproveCareNow and with my care team at Riley.  Not only do we want to understand how these children get this disease and how to treat it, but I love that ImproveCareNow focuses on other how’s - like how to achieve a higher remission rate, how to increase adherence and how to transfer children successfully into adult care.

At the Fall 2013 Learning Session there were twenty parents in attendance.  As pre-work for the session, the parents were asked to answer two questions:

What is your vision of improved care?

What does pre-visit planning with your child mean for you?

Parents at the Fall 2013 ImproveCareNow Learning Session completed pre-workThe objective of asking parents to answer both these questions, and our attendance at the Learning Session, was to give perspective on the whole picture of these diseases.

[Editor’s Note: Liz D is the mom of a three boys.  Her youngest son was diagnosed with Ulcerative Colitis at age 5.  She volunteers her time as a parent representative on the Riley Hospital for Children Parent Mentor Group, where she is an advocate for all families with IBD receiving care at Riley.  A mechanical engineer by trade, Liz has “retired” and loves her role as a full time wife and mother.  This has also allowed her to pursue her love of all that is artistic and creative.  Over the past 12 years, she has taught both photography and memory preservation classes to both adults and kids.]


Who is an advocate?

In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I'd come back from my blogging hiatus and talk about what it means to be an advocate.

Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler - and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years.  I remember how much I once idolized many of the 'popular' IBD bloggers. I didn't really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she's just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.


IBD flare...a lesson in humility

Flare. It’s a common, yet dreaded, word used by IBD patients.

 

You would think that being a Crohn’s patient for nearly ten years, it would be a word I’d be quite comfortable with.   Or at least a word that I use when describing my medical history and disease symptoms to others…but, ironically, it’s not.

 

I’ve always been one to downplay the severity of nearly everything going on inside my disease-stricken body.  I’m sure many of you know just what I’m talking about.  These responses may look all too familiar to some of you…

 

“Today was a relaxing day…I got some good reading done!”  (While this is true, I strategically left out the part about doing 90% of that reading while in the bathroom.)

 

“Yes I had surgery last week, but no worries it was pretty minor”.  (Is there really anything minor about months and months of recovery time?!)

 

Or, my personal favorite…“Yeah, today was a good day!”  (Did I mention my “day” began when I was finally able to drag my fatigued body out of bed at 4 pm?)

 

While I pride myself on having a positive attitude and outlook most of the time, I’ve found that this positivity is also sometimes a warning sign that simply says one thing…denial!  My ability to seemingly immediately emphasize these “silver linings” is a way in which I deny what is actually going on with me to others, but more importantly, to myself.  Because let’s be real, who really wants to admit the reality of all that a flare entails!

 

And that, my friends, is why the word “flare” is not a common word in my vocabulary and I assure you it is not because I have been in remission for most of, or even half of, the last ten years.  It is because I don’t want to admit it.  For some reason, in my mind admitting this kind of thing threatens my ability to come up with endless silver linings and possibilities.  However, seeing that I have spent the majority of my time over the last four months between my bed, the bathroom, and the couch, I think it is safe to say…I am in a flare.

 

Saying those simple words is incredibly humbling for me.

 

Going from being a super independent 20-something to living back at home with my parents, needing help with the most basic of tasks is a huge lesson in humility.  I like to think that I can do it all, I can handle it.  And most days, that is absolutely true.  But sometimes, sometimes doing it all on your own isn’t necessary, and sometimes is just simply isn’t possible.

 

It is times like these in which I have to set aside my pride and rely on the support system around me to keep me going.

 

I must swallow my pride enough to reach out to the friend or family member that has said “let me know if you need anything” to say, I just really need someone to do a few loads of laundry for me, or could you come over this afternoon just to keep me company.

 

Yet one of the most humbling experiences I’ve had while being in a flare is that, quite simply, people can have a way of surprising you in the most unexpected ways.

 

Maybe the surprise comes when waking up to a chai tea latte (soy of course J) sitting on my night stand left there by my best friend stopping in as I was napping.

 

Perhaps it occurs when opening a package full of get well letters from a class of third graders, covered with drawings of the most adorable penguins because their wonderful teacher, and my dear friend, told them they were my favorite.

 

Or maybe it’s receiving an email from an IBD friend that simply says hey, I met another Crohn’s patient who is having a hard time and I think you’d really be able to help her.  And in that sentence, those few simple words, my sense of purpose is restored.

 

Humbling.  All of it is so incredibly humbling.

 

So here’s to being thankful for so many lessons in humility, and hoping that remission is right around the corner. And if it’s not, maybe it’ll be around the next one.


1  2  Next →

Built by Veracity Media on NationBuilder