LOOP

Our IBD journey began over five years ago with our oldest daughter. It presented itself more like a thief in the night rather than a bold, coming out. For three years prior to diagnosis, there was a sense that something was not right, but the clues left were random and independent of each other. Add in a misdiagnosis and it would take someone highly skilled to assemble the clues and uncover the mystery.

Having a parent partner has incredibly enriched the care that our Pediatric Gastroenterology department provides to our patients and their families. It brings a fresh and enthusiastic perspective to our group meetings and has provided valuable feedback for our IBD informational packet that will be given to families.

Recently, I had the pleasure of sharing my story at a Learning Networks conference here in Atlanta. When you hear the term ‘learning networks’ just think ImproveCareNow, but for other chronic illness populations. This particular conference was unique because it brought four unique, budding learning networks together for the first time. The whole experience was extremely valuable, and it was amazing to see four learning networks that are at different stages, ranging from just starting out to those that have been doing it for a while. Sometimes in ImproveCareNow I find myself wishing change happened more quickly, but the experience helped remind me that we have come so far already. The purpose of my speech was to energize and inspire the participants, but I think it was me who came away inspired.

Several participants asked me to share my speech transcript so they could share with others after the conference ended. I thought maybe I could do one better and share my words with my entire ICN community. So, enjoy and I hope this reinvigorates you in our fight for better care and outcomes for young people with IBD.

We have a problem. The problem is that people seem to be focused on the what of our ostomies and not on the why. Having an ostomy can drastically improve someone’s health; it can even save lives. For many of us ostomates, getting one is not a choice we have the liberty to make.

Last November I wrote about a personalised health literacy application, which I developed as part of my master in Advanced Product Design, for children who recently have been diagnosed with a form of IBD. In this previous article, I explained why we should improve our health education for this target group and what the benefits could be if children become more interested in educating themselves independently about their newly diagnosed disease. This article will dive into the actual health education application, which is called Pling.

I stumbled upon ImproveCareNow (ICN) by chance. A predecessor to the network, the C3N Project, had been mentioned in passing during assigned reading for one of my university courses. Naturally, as someone with ulcerative colitis (UC) I was intrigued. Though at the time I was busy with essays, a dissertation and job applications so C3N fell to the back of my mind.  

My name is Steve Woolf and I come from a family of five in Fairfax, Virginia, including a daughter in college and two 17-year-old twins, one of whom is Becky. Becky was diagnosed with Crohn’s disease at age seven, although we believe she was symptomatic before then.

It’s been a busy year for the Patient Advisory Council (PAC). Twenty-eighteen has seen the PAC evolve to be more dynamic and engaged than ever before. The progress and developments made in our group of 50+ patient members include substantial leadership changes and more toolkits than I can even remember. 

As co-chair of the Patient Advisory Council (PAC) Advocacy task force, I am excited to announce our new Accommodations Toolkit! Becky and I (with lots of support from the entire PAC and ICN social workers) developed this toolkit as a resource to help patients, parents and providers better understand and navigate the accommodations process.