LOOP Blog

As a patient with a chronic illness, I have become well-versed at shedding my humanity and emotions and leaving them outside the clinic room, like taking off my shoes when coming home. We are made to believe, through experience and myth, that doctors are only interested in data. I am so practiced in this belief – or perhaps in that fear – that I can recite my diagnostic and treatment history in full, like rattling off a monologue with the medicalized Latin words becoming normalized. 

Whether it’s a concert solo, home run, parade, or when a family member gets out of the hospital after a long stay, there’s no feeling like when the crowd goes wild with support and encouragement. In these moments, the town you live in begins to feel like a community.

The goal of medical research is to find answers that will improve the lives of patients. ImproveCareNow is committed to ensuring the research we support is answering the questions that matter most and will have the greatest potential to impact our community. During 2015, the ImproveCareNow community identified the most important areas where we should be focusing research. Through the Patient Priorities platform, suggestions were submitted for over 200 pediatric IBD research topics. This list was then refined and condensed to 22 unique potential research topics.

How many times have you heard that Camp Oasis – a camp just for kids with Crohn’s disease and ulcerative colitis – is a special place and experience for kids with IBD? Probably more times than your fingers can count. Even still, deciding to go to camp isn’t always an easy choice to make.

The PAC is working to expand a patient-to-patient mentoring program. They have a lot of momentum right now and PACer Christian Hanson and his task force members wanted to share why mentoring is important to them and how they see it making an impact in the lives of others living with IBD.

ICN Nursing Group brings together nurses from across the ICN Network. These nurses have years of IBD experience and aim to use these knowledge and insights to enhance patient care by identifying best practices in patient education, clinical nursing care and providing professional support to the Network.

When I was first told I had colitis I was only 7 years old. I had really bad cramps and started pooping blood. We went to the doctor and he checked me out. They didn’t really know what was wrong at first and we had to go back to the doctor again until my mom insisted that something was really wrong. They took some blood. After that, they put me in a special room where he put an I.V. in and covered it with what felt like a cast. In 30 minutes I was put on a stretcher and rushed out the door and into an ambulance. Off to a different hospital. I knew it would take a while, so I fell asleep, next thing I knew I was on a hospital bed with my mom. My favorite blanket was with me, but I didn’t know how it got there.

Why do we ask questions?

As a Learning Health System, ImproveCareNow is actively listening and really values the input, ideas and experiences that community members have to share. They actually help us do better. Recently we asked community members to share an enteral nutrition (EEN) experience (if you had one) and we heard back from three people. We were able to share their stories here on LOOP, which led to more discussion, sharing and learning about EEN.