LOOP Blog

My name is Derek and my daughter, Caitlyn, was diagnosed with Crohn’s disease at age 9. At that time, I immersed myself in the medical literature and sought to build good connections with like-minded parents through organizations like the Crohn’s & Colitis Foundation and, ultimately, ImproveCareNow. Through ImproveCareNow, I have joined a community of patients, parents and scholars engaged in understanding, managing and treating pediatric IBD. This year, I was pleased to be offered the opportunity to engage at a deeper level with the ICN community, by serving as lead for the Parent Working Group Research Subcommittee for ImproveCareNow.

My name is Rosa. I'm 23 years old, and was diagnosed with ulcerative colitis when I was 11. I graduated from Lewis & Clark College in 2016 with a degree in Medical Sociology. I'd like to go back to school at some point, and get a degree in disability studies, social work/counseling, or public health (I still haven't decided which!) I'm hoping to find a job that allows me to use my own experiences with chronic illness to help others dealing with similar issues and frustrations!

ImproveCareNow members are first to receive new, co-produced tools, toolkits and guides – like Finding a Mental Health Provider for Your Child and Teen with IBD, which was co-produced by the Psychosocial Professionals group and members of the ImproveCareNow Community.

We will be releasing a new tool very soon! Join now and be the first to see the Crohn’s & Colitis Storybook.

While surgery may not be a fit for all IBD patients, it’s certainly a topic to discuss. I invite you to join us on Twitter on Wednesday, January 24, 2018 @ 1PM EST as we @ICNPatients talk about surgery and IBD.

My name is Andi and I’m a freshman at Indiana University-Bloomington where I study Biotechnology, Chemistry, Spanish and Pre-Med. I was diagnosed with Crohn's disease in April of 2008. I currently take Methotrexate, which has kept me in remission for about nine years now. A fun fact about me is that I collect snow globes.

One of my greatest struggles in dealing with a chronic illness, is the mental side effects that come along with it. I can be moody or withdrawn and I find it affects those around me.

I'm Joshua – a 21-year-old Stanford senior. I was diagnosed with Crohn's in the 7th grade and have been, for the most part, in remission since then (I've been on Remicade pretty much continuously). Most people don't know that I can roll my stomach – I'm a pretty open book, so that's all I got!

Since I've only experienced Crohn's-related symptoms 2-3 times in my life, whenever I have any GI symptoms or problems, I always get anxious that "the Crohn's has come back." It can be mentally exhausting at times, but luckily school keeps me busy and distracted.

As the Patient Advisory Council says hello to 2018, we want to take time to reflect on all we accomplished in 2017. From new members to new toolkits, retreats to a redesigned logo – we have so much to celebrate!

Like most people, I’ve had my share of challenges in life. However, in March 2017 I was met with my biggest challenge to date. I started to feel sick with bad stomach pain. As time went on I noticed the pain was getting worse. I started to lose my appetite and was vomiting multiple times a day. My parents called the doctor, and they said it was probably a stomach bug. They recommended waiting two weeks to let the virus run its course.

A few years ago, I gave one of my older brothers a children’s book called “It’s Okay to be Different.” The book was downright hilarious. It contained colorful pictures of people “being different” and being okay with it. Didn’t you know that “it’s okay to come in last?” Or, my favorite, “it’s okay to eat macaroni and cheese in the bathtub.” As you might guess, I gave this book to my brother to poke fun at him, not on a serious note. However, the book had a good point. IT IS okay to be different. In fact, it’s pretty flippin’ awesome.

The Patient Advisory Council (PAC) is a group of young (14 +), passionate and motivated patients with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease, or IBD). Together, the PAC is a voice for all patients receiving care at ImproveCareNow Centers. PAC members contribute to research studies and the development of health care innovations; they share valuable experience and insights with healthcare professionals, researchers and others; and they raise awareness of IBD and ImproveCareNow. In this post, PAC members have answered questions they are frequently asked, about what the PAC is, how to connect patients with the PAC and how to support the PAC in reaching their goals. (If you’re a member of an ICN center – pay close attention to the last four questions & answers - they're directed at you!)