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.

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:

Yesterday I felt tired. This concerned me.

I’m used to feeling tired at the end of my Remicade cycle, but I had my last infusion four weeks ago. With four more weeks until my next, I should be at my physical peak. 

It could have been the cold weather, or the rain, or my night of restless sleep. It could be the stress of my two exams next week, or the consequence of running around campus from seven in the morning to nine at night. 

The cause of my fatigue could be any of those reasons. Or it could be the flu.

Have you ever been so annoyed by people you just want either to slap them or crawl under a rock and hide from them? It could be because they don’t know when to stop talking, or they constantly complain about such petty things. Sometimes you find yourself wondering how the heck they got this way! I have been mulling this over a lot lately because, no matter how annoying people can be, I also know that each individual was made unique for a specific purpose. Hear me out…

Let's give a warm welcome to - and get to know - six incredible new PAC members & patient advocates. Christian, Emma, Hindy, Julia, Natalie & Marisa 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 26,000 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes. Let's meet them.

I spent many years thinking I was the only kid with Crohn’s Disease in my area. 

It is human nature to want to learn and question the world around us. It is natural for us to seek innovation, invent new things and express new theories. This is how we improve and how we have achieved the advances we have today. Nothing is wrong with this innate desire to learn and be curious, except when you’re the one that’s being questioned and or are the object of someone’s curiosity.

PAC co-chairs, Bianca and Alex, are on the blog today to recap some of the amazing things this group of patient advocates has accomplished this summer. The PAC was created in 2011 with the intent to bring IBD patient advocates together to change IBD care for and with the ImproveCareNow Network. Over the years the PAC has evolved and grown and we've highlighted this in our new timeline. This summer the PAC made strides towards becoming a bigger, more engaged and effective council and we're excited to share how we're doing it and what it means for the future.

It’s a scene out of a typical relaxing Sunday afternoon: you’re sitting on the couch, watching your favorite TV program. There’s some occasional napping thrown in there, and it’s like you don’t have a care in the world. After the stress and busyness of school or work it makes for a restful and relaxing afternoon. To an outside observer, life during an IBD flare might look like exactly that.