LOOP Blog

Five years ago today, on February 21, 2012, I was diagnosed with IBD.

Thinking back on my five years living with IBD, I realize that there have been many ups and downs, with struggling and succeeding, falling backwards and moving forward. I was 16 years old and in perfect health, up until about two months before my diagnosis, when I started experiencing severe symptoms. It was all so sudden and impactful. I went from being perfectly healthy to being extremely sick; from having no symptoms to having every symptom on the IBD list. On the five year anniversary of my diagnosis, I thought what better way to look back and reflect than to highlight some of the extremes in my story:

Studies of transition readiness in young adults with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) suggest that patients often lack disease-specific knowledge and are not confident in their ability to manage their disease. This can lead to worsening disease activity and increased healthcare utilization.

Preparing young patients with IBD to transition from pediatric to adult care, and actively transferring care to the adult care team, is crucial to ensuring the continued effective management of IBD. Within ImproveCareNow, the Transition Task Force is focusing on transition and transfer of care across the network.

Liz is a mom of three whose youngest son was diagnosed with ulcerative colitis (UC) at age five. To manage his UC he takes Humira injections, which are known to be painful. Liz remembers vividly how stressful and difficult it was to get past the pain and anxiety on injection day. The process of negotiating would take nearly an hour, and when the shot was finally given everyone was totally drained. Not willing to accept that this was just the way it had to be, Liz started researching and discovered Buzzy - a device that distracts from injection pain by confusing nerves with both temperature and vibration.

Several teams have been meeting regularly as a part of the ImproveCareNow (ICN) Engagement Campaign, to learn about and test tools and ideas to increase parent and patient engagement at their centers. These were all teams that were struggling to find parent partners who wanted to be involved just one year ago. During their most recent check-in call, the group ended up having a vibrant discussion where they shared successes, big and small, and learned from each other how to continue to increase engagement.

Dear Friends,

ImproveCareNow has had enormous success since it began 10 years ago. Together we have increased remission rates for thousands of children and youth with IBD, transformed how care is being provided, enlightened and excited clinicians and other care providers, and engaged patients and parents in a common mission and work.

"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.

In 2012 I wrote It’s OK to say it sucks! I was rereading that post and thinking that even though I’m older, I’m not necessarily any wiser. Here’s what I mean.

Let's give a warm welcome to - and get to know - five new members of the Patient Advisory Council (PAC). Nicki, Rebecca, Becky, Sarah and Abigail are imPACting the lives of kids with Crohn's disease and ulcerative colitis, by raising awareness about the realities of life with Inflammatory Bowel Disease (IBD) and building connections and tools to support each other and all young patients with IBD. They are also using their voices and experiences to actively represent over 27,000 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes. Let's meet them.

If you are like me, there are times you are on pins and needles with your child that has Crohn’s or Ulcerative Colitis; wondering if they will continue to do well or if the next cold that requires antibiotics or a bout with the flu may take you back to square one in your attempts to get IBD under control. It is the unknowns that scare me about dealing with this disease...

I was honored to be invited to talk about my joint experience as a young adult with IBD and medical student at the American Academy of Pediatrics National Conference and Exhibition in San Francisco. Guided by the philosophy of ImproveCareNow (I am a former co-chair of the Patient Advisory Council), I emphasized the necessity of patient and parent partnerships, as well as the value of mentorship and representation of disability in medical education. I invite you to watch my talk: