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.

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.

My name is Norma. I’m 17 and I have battled ulcerative colitis since I was 10. I was born and raised in a small town near Mexico City, but a year ago my Mom and I moved to Los Angeles, California. Currently I am a senior in high school and hopefully next year I'll be attending Harvard University (YEP, HARVARD!).

For years I spent my time looking for someone to blame, it didn't matter who. I blamed myself for not being "normal" or healthy enough. I blamed my Dad (who battles UC as well), and I blamed God. I needed a reason for why I was going through such hell; why I couldn't attend school like my friends; why I had to take so many medications; why I had to go an outrageous amount of times to the restroom. I fell into a deep depression.

The worst part is that, at the time, I didn't realize this was affecting my parents as well. They lived every single step of the way with me. I think that having IBD is awful, but having to watch your kid struggle with IBD must be even more awful.

An infusion during Thanksgiving week?

Yeah, I’ve had to get infusions on or close to Halloween, Cinco de Mayo, New Years, my birthday and other holidays too. Turns out my health doesn’t really consider fun, festive or eventful times in life as suitable excuses to delay my infusions. So, I’ve learned to roll with it, scheduling infusions that I know will wipe me out for a couple of days every month for almost six years now. I’ve had a lot of infusions in my life, so it’s pretty routine for me, but I wanted to write down step-by-step what my experience is like in case it’s helpful to others.

Traveling can be fun, stressful, or both. As an aviation geek, I love nothing more than to stand in the airport looking at those beautiful birds outside, to say nothing of actually getting into one and flying away. However, IBD can make the travel experience more challenging than it already is. I’ve traveled quite a bit in my time, so allow me to walk you through my process of air travel with IBD, from planning the trip to arriving at my final destination.

Oh, the dreaded d-word. Typically, I can't say I depend on US Government documents for my definitions, but I feel like this is one of those situations where I can. Per various acts, written over many, many decades, a "disability" is frequently referred to as something that is a physical and mental impairment that substantially limits one or more 'major life activities’. So, with that definition in mind, as offices on college campuses around the country change their names from "disability office" to "accessibility office," I'm left wondering what it is they're trying to achieve, and why so many people are scared of being classified as having a "disability."

Watching my mother in tears through the glass window panel, I felt pain. Feeling the wires stuck to my chest, I felt cold. Hearing the heart rate monitor race rapidly, I felt scared. Listening to the anesthesiologist who told me to close my eyes, I felt my worries drift away. I awoke in confusion as I was rolled back to the children’s ward of the hospital in a stretcher. The white walls, patients, and doctors blurred into one as I tried to fight off sleep, but it easily won. After hours of sleeping, I awoke to the sound of the doctor’s knocking. He took a seat at the end of my bed and stared into my eyes with a mixture of compassion and sadness. I anxiously waited for him to speak the words that would change my life forever.

I read online somewhere that the best way to describe Crohn’s disease is that it feels like slashing open your intestines with a chainsaw. I can really relate to that post. You see, I’ve had refractory Crohn’s for eight years, which means my disease doesn’t respond to anti-TNF medications, and that significantly limits my treatment options. And that leads me to my most recent Crohn’s adventure. It all started on a Thursday in late February. After trying and failing Entyvio, my doctor was running out of ideas. He recommended I go to another IBD clinic with more experience treating complex cases like mine - to see if they had any ideas about what I could try next.

My four-year-old son had recently been diagnosed with Crohn’s disease, and the worst part about the whole thing was the needles! IVs, blood draws, shots, Humira injections, etc. Around the same time as his diagnosis, I attended an ICN Virtual Community Conference and that’s where I heard about Buzzy.