I have Crohn’s Disease. Crohn’s Disease, for anyone that doesn’t know, is a form of inflammatory bowel disease, or IBD. This affects my digestive tract and can range anywhere from my mouth to my butt. Yes, I know that might be gross to some of you, but for anyone with IBD you know that talking about poop just comes with the territory. The symptoms may seem gross at first, but after having countless scopes, exams, tests and bloodwork, talking about your poop and pooping habits isn’t really a big deal. This isn’t my diagnosis story exactly, but it is some of what people with IBD and I have had to go through with this disease.

I’ve had Crohn’s for almost nine years, and it hasn’t been an easy task to grow up with this disease. At first it made me feel like even more of an outsider and hate myself and my body. It’s hard to like yourself when you look in the mirror, have prednisone cheeks or lose weight rapidly and your body seems to be attacking itself from the inside out. Some of my friends have been bullied or told they look like they have an eating disorder, when really they haven’t been able to maintain a “normal” or “healthy” weight because the disease is attacking their insides.

When I was first diagnosed, once it hit me that I had this, I did a bunch of projects about it. I researched different things about the disease because I wanted to know all that I could about it. If I couldn’t predict why or when it was going to flare up, I at least wanted to have some understanding of what was happening.

I also researched famous people with IBD. I wanted to know that I could still live a productive, successful life in spite of this disease. Over the years since my diagnosis, whenever I hear another person speak up about their IBD it makes me excited but also a little upset. I’m grateful there are people out there willing to speak up and show everyone that this disease isn’t going to stop us from living our lives, but it still isn’t the greatest to know people have to deal with this on a daily basis. It does give me hope, though that one day there won’t be kids worried about this because one day, maybe-- possibly-- there will be a cure.

It’s been hard growing up with a digestive disease, even more so when you are diagnosed around the same time kids are going through puberty. There have been many times when I’ve had to cancel plans because I couldn’t leave the bathroom, get out of bed, walk without being in pain, or even just stand up straight. I’ve had days where I am tired from doing absolutely nothing. My body wears itself out and is fatigued just by taking a shower. The simplest tasks to some become the hardest for people with a chronic illness.

Fortunately, *knock on wood*, I haven’t had any surgeries. I’ve had many endoscopies, colonoscopies, more blood work than I can count, countless medications and changes, and way more “gross” tests like rectal exams and having to drink barium or 64 ounces of Miralax mixed with Gatorade in a few hours. Side note, I will never be able to regularly drink Lemon-Lime Gatorade without gagging and I still can’t drink chocolate milkshakes because it reminds me too much of barium.

But while I’m lucky, in a way, I have close friends that aren’t as lucky. They have tests daily, they’re hospitalized, have to take off from school or work and change their entire lives around because of this disease. And one of the most frustrating parts? It’s an invisible illness, so people can’t visibly see your struggle -- meaning people don’t always understand. They don’t understand that we never chose to be sick. We would love to be “normal” again, to not have to take handfuls of medications each day, to get blood work every week, to go to the hospital every six to eight weeks for treatments, to get more scopes than 50 to 60 year old people have ever had. And we never know when we’re going to flare up. You can be perfectly fine one day and the next barely be able to sit upright.

I’ve been bullied and I’ve lost friends along the way, but I’ve also gained more lifelong friends and family. The one bright side to having IBD is that I got the chance to go to a summer camp called Camp Oasis. This is around a week long sleep away camp for kids with Crohn’s, Ulcerative Colitis and other forms of IBD. Camp Oasis is my favorite place in the world and it really is my “home away from home.” The people that I’ve met there are some of the strongest, kindest, funniest, most loving people I’ve had the chance to call friends. They’re my Oasis family and I know that when they say they understand what I’m going through, they really do.

IBD is a hard thing to learn to cope or deal with and there isn’t a cure yet. When you’re in pain all day and night and there’s not really anything you can do about it, it’s hard to remember how things were before you had this disease. Before everything turned upside down. But there are good moments and moments where I remember why I have to talk about this. While it’s somewhat embarrassing to speak up about around some, in fear of getting judged or talking too much, IBD needs more awareness and understanding. So here I am writing about what my IBD is like, and I’ll probably continue to write about it every now and then because IBD needs to be talked about.