From the Hospital to the Big Screen: Derek and the Crohnie Movie

From the Hospital to the Big Screen: Derek and the Crohnie Movie

From the Hospital to the Big Screen: Derek and the 'Crohnie' Movie A conversation with Derek Mari Recently, we had the chance to chat with Derek Mari about his diagnosis of Crohn's disease, why he fights so hard against stigma and shame, and how he's bringing this story (hopefully) to a really, really large audience - through a full-length film. Follow along with what he had to share: GBM: Let's start at the very beginning - your diagnosis story. Derek: I grew up in Modesto, CA, and was originally diagnosed with ulcerative colitis at the age of 15. It happened after about a year of dealing with symptoms, and so so much Tylenol. Although I finally received that diagnosis, it still felt like a mystery. I didn't really understand the problem, only that I was in a ton of pain and wanted it to stop. I eventually moved to Los Angeles to go to film school, and I started seeing a gastroenterologist at UCLA. My diagnosis...
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Adventures with an Ostomy

Adventures with an Ostomy

Adventures With An Ostomy Guest Post by Abbey Corbett Life. Life. It’s a beautiful thing. It’s unpredictable. It’s exciting. It’s maddening. It can change in the blink of an eye.  The year was 2009. I was sitting with one of my roommates at college when something caught my eye on the muted TV screen. It was a photo of a stunning young woman in a black bikini confidently showing off her ostomy bag. I was immediately drawn to the story because as someone who had been diagnosed with Crohn’s disease at the age of 8, I knew that a bag was almost guaranteed to be in my future. When I pictured it though, I pictured it 20, maybe 30 years in the future after I’d been married and maybe had a few children. After I had been able to get as much out of life as possible. Sudden Turns When You're Not Ready Fast forward 8 years later, I found myself sitting in my doctor’s office...
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Married to Crohn’s Disease

Married to Crohn’s Disease

Married to Crohn’s Disease Guest Post “If I had the world to give, I’d give to you as long as you live.” -Jerry Garcia Marriage and Crohn's Disease A lot of people ask me what it’s like to be married to someone with Crohn’s disease. Well, I’ve never been married to anyone without Crohn’s disease, so I assume it’s a lot like a normal marriage. My husband, Adam, and I have been married for less than a year. We dated for a while before taking the official plunge, though we pretty much always knew we would end up at the end of the aisle together. He was diagnosed with Crohn’s disease over 20 years ago. Because he was diagnosed so long before we even met, some aspects of his life with Crohn’s disease were already figured out. He already knew what kinds of foods would hurt when he’s in flare. He already knew what his body felt like when a particular medicine stopped working. He already...
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Learning Life as a Parent of IBD

Learning Life as a Parent of IBD

Learning Life as a Parent of IBD Guest Post by Tracy Jackson Knowledge is Power When I became pregnant, I read everything. I read parenting books, psychology books, what to expect books, you name it, I probably read it. To me, knowledge is power, the more I know the better it will be to handle things as they come my way. As my kids Sarah and Danielle grew, I read about the “terrible two’s” and raising school age children. Having kids only 15 months apart, I started to get familiar with the teenager books and hoped I could manage the road ahead that they would be facing almost at the same time. Raising a teenager is hard. The idea is you are supposed to be giving them more responsibility as they mature, guiding them towards independence & adulthood. Adding Crohn’s to the mix of teenager really complicates things. Danielle was 11 years old when she first showed symptoms of IBD. Over the course of 6...
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Along the Journey of Crohn’s

Along the Journey of Crohn’s

Along the Journey of Crohn's Guest Post by Erica Baker I don’t know where to begin. It has been suggested to me many times that I write down the story of my journey through college, getting a grown up job, getting married, having a baby and oh, yeah having Crohn’s disease. I am not truly sure where to begin with this story, so I will begin at the beginning and go to the end, though I know it will not be straight through, as no good story goes straight from beginning to end. 2009 College can be a trying time for anyone. Moving away from home, dining hall food, partying, and stress from an insane course load is enough to cause anyone a little digestive distress; especially someone who has food allergies, such as me. I spent four years trying to figure out where the “hidden” bathrooms were in each of my academic and resident buildings to ensure no one knew it was me getting “sick”...
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Conquering Crohn’s

Conquering Crohn’s

Conquering Crohn's Guest Post by Robbie Kochs I want to start by saying one thing to anyone and everyone, whether you have Crohn’s Disease, IBD, a chronic illness, or anything at all. If you have a dream, a goal, a vision, go out and get it. NEVER let anything stop you from reaching this dream. You are too good for that. If you are passionate about something then go do it. If people tell you that you can’t accomplish this goal then go and prove them wrong. Fight the fight. Just know that when you begin the fight for your dream you will get knocked down. It’s inevitable. Obstacles will get in your way, but you know what you do? You get back up and NEVER give up. One of my favorite quotes comes from a very famous man by the name of Rocky Balboa, and he says, “It’s not about how hard you can hit, it’s about how hard you get hit...
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Crohn’s, Colitis, and Being a Parent

Crohn’s, Colitis, and Being a Parent

Crohn’s, Colitis, and Being a Parent We had the chance to sit down and chat with two very special people about an important topic – IBD and Parenting. In this post, we compare, via discussion, parenting roles with IBD. They share their emotions, fears, and what it means to be a parent. Frank Garufi, Jr of the Crohn’s Colitis Effect doesn’t have IBD, but his young son does, and he’s just as involved as if he was the patient. Sharon Saeed of IBD Journeys has IBD and has been through her share of hospital stays, all while being the best mom she can to her amazing kids. GBM: Tell us about your family. How has IBD touched your family? Ever since my kids could remember, they know Mommy sometimes goes into the hospital. Especially in the past two years, it has really turned our lives around. Prior to June 2011, I was probably one of “those” moms - if there was an activity, my kids would be signed...
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IBD and the Weight Loss Struggle

IBD and the Weight Loss Struggle

Thanks and admiration to our friend Eliza for opening up about this sensitive topic, and reaching others who may need to hear her story. Weight, a topic most people care not to always talk about. Add in having IBD and that’s a whole new ballgame. I’ve struggled with my weight for more than half my life, I’ve only lived with IBD for 5 years. I’m not sure which I dislike more, dealing with Crohn’s or struggling with my weight. To be completely honest, one of the first things I knew about IBD was that it could cause weight loss, and the saddest part, I was excited about that fact. I didn’t understand the consequences that came along with weight loss from IBD. I was almost angry and bitter at first when my Crohn’s didn’t cause me to lose any weight at all. I saw people who struggled with keeping weight on as “lucky,” and now, looking back, I can’t believe I ever thought that...
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Cheering Despite Crohn’s

Cheering Despite Crohn’s

Cheering Despite Crohn’s This guest interview comes from a young girl who didn’t let a Crohn’s diagnosis take away her strength and spirit. Read about how Crohn’s has changed her life, why she’ll never give up on her dreams, and her advice for other kids going through the same thing. GBM:  Let’s start by having you introduce yourself. Shaye: My name is Shaye and I’m 11 years old. In September of 2012, I considered myself a very active girl – I was on an elite-level cheerleading team, playing rep soccer, on the diving team, and I had just landed a role in a Christmas pantomime (play). It seems like a lot for anyone, but this was a normal lifestyle for me. I love being active and being involved in things. GBM: What is your diagnosis? Shaye: I was diagnosed with Crohn’s Disease a few months after I started noticing symptoms. My diagnosis was in May 2013, but I first went to the doctor earlier in...
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Emily’s Clinical Trial Journey

Emily’s Clinical Trial Journey

Emily's Clinical Trial Journey Emily, like so many Crohn’s patients, has struggled with symptoms on and off for several years. She’s tried nearly every approved medication available, and on top of the everyday pain of dealing with disease, she’s got the added anxiety of feeling like she’s running out of options. Emily’s decision to enter a Crohn’s clinical trial comes from both her willingness to seek out another option, and her desire to contribute to research. Patients’ participation in drug trials are part of the Clinical Study portion of the FDA approval process, which includes 3 phases. Each progressing phase includes a greater number of trial patients, so the majority of experiences are part of Phase 3. This phase looks at effects on a larger population including demographics, considers side effects, and often uses drugs in combination with others. Previously, during Phase 1 and Phase 2, safety and effectiveness have already been tested. Hope for a 'Very Challenging Patient' I was first approached by...
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