A few years ago, I was in a retail chain store and the person in front of me at the cashier asked to use the bathroom. The cashier said, "We do not have a bathroom." So, when it was my turn to cash out I said, “You have a bathroom...you just don't let the public use it?" She answered me, “Yes.” I thought to myself that this would be a great teaching moment.

The ImproveCareNow Registry is a treasure trove of information about patients living with IBD. But, data, like Amazon gift cards, are worthless unless used. And it takes some intrepid, or at least good-with-numbers, Indiana Jones-type researchers to plunge into the depths of the jumble of figures – to put the data to work to answer questions.

This summer marks the six-year anniversary of the beginning of my role as a caregiver for a child with a chronic illness. At times, my daughter’s diagnosis seems so close – and yet so far away. In those six years, she has blossomed from a child into a beautiful young woman. Today she can speak with authority about her care, her medications and her routines. Six years ago, she couldn’t pronounce her medications - let alone tell you the dosing.

It is difficult to understand what it’s like to live with an ostomy, or counsel someone on what to expect, if you’ve never had one yourself. With this challenge in mind my son Tyler and I created Project WOW (Wear an Ostomy for the Weekend) and offered it to attendees at the Fall 2015 ImproveCareNow Community Conference, with the goal of helping people gain some perspective by “walking in patients’ shoes” for the weekend. Recently, at the Spring 2017 Community Conference, we offered Project WOW again, with a few new twists.

Come the end of the year, the Crohn’s and Colitis Foundation of America (CCFA) organizes Advances in IBD, a medical conference dedicated to topics in IBD research and care. The foremost clinically-oriented IBD meeting in the US, this conference attracts both adult and pediatric clinicians.

Per tradition, Advances in 2016 is held in Florida. And, that is how I found myself in the Magic Kingdom, rubbing shoulders not only with Mickey and Minnie but with the biggest names in IBD. As the parent of a 12 year old child living with Crohn’s disease, I was attending in the hopes of moving beyond the ‘IBD 101’ webinars and the usual CCFA-supported patient educational sessions to gain a higher-level understanding of the issues at the cutting edge of IBD management. If knowledge equals power, I needed to level-up and Advances seemed like the perfect place to do so. Unfortunately, I learned there is no clear path for parents or patients to register for this conference (co-production comes slowly in medicine). But, after some discussion with the good folks at CCFA, I was able to sign-on as a physician (having gone to medical school does come in handy), even though I am neither a gastroenterologist nor an IBD specialist. So, it was as a parent-mole that I sat among the sea of clinicians, feeling a bit like an imposter, and jotting down what I found of greatest interest from the perspective of a person affected directly by IBD. What follows are these observations – admittedly filtered by my personal experiences as #DadofkidwithIBD

I’m Wendy and in addition to being a baby/child sleep coach (I love helping families sleep), I care for my 5 year old daughter who was diagnosed with Crohn’s disease in September 2016. As we have been adjusting to life with IBD I’ve been journaling how I am spending my time. When our pediatric GI introduced us to ImproveCareNow I wanted to share my story to support others who may be going through a difficult time and to hopefully explain why I may be unintentionally ignoring friends and family.

Here are 29 ways I have been spending my time:

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.

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...

As 2015 ends I can say the year was nothing short of remarkable. The Parent Working Group (PWG) grew, accomplished and got stronger. The fall Community Conference was a high point for parent participation. My first conference was in October 2012 where 18 parents attended. This year our numbers swelled to nearly 50. Participation on our monthly calls has increased 50% in six months. This growth speaks directly to the partnership between the ImproveCareNow Network and parents.

Project WOW (Wear an Ostomy for the Weekend) was created to help the ImproveCareNow Community learn more about what patients wearing ostomies go through on a daily basis. The Parent Working Group (PWG) and Patient Advisory Council (PAC) wanted to create a learning opportunity where we could work together. We knew this project would only give a snapshot of what patients go through because participants wouldn't have had surgery and the ostomy wouldn't be functional. But we still believed it would be powerful because participants would be learning from perspective, spending some time "walking in patients' shoes", which is something often times difficult to accomplish and not easily seen.