2BD’s Exclusive Q&A with Rochester Native and Creator of the ‘Crohn’s Moans,’ Ivana Bosek

 

We didn’t have to search too far to meet Ivana Bosek, a Rochester, NY native who lives with Crohn’s disease.

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Ivana has the type of story our website sets out to tell; a real reason to go Two Buttons Deep and get the scoop on someone super cool who’s making a legitimate difference. Did Ivana sit still and accept her situation when faced with a chronic illness? Hell no. She raised money to hit the road, film a visually beautiful and eye-opening documentary, and raise awareness for her cause to ultimately help others and discover herself. I’d keep going, but no one can tell the story better than her, so check out what she shared with us in this Q&A with 2BD.

TAYLOR: Thank you for spending some time to talk with us at Two Buttons Deep. Some of our writers had a chance to connect with you a few years back and started to follow your story through social media. But for those who don’t know you, what’s your 30-second “about me” blurb?

IVANA: Well, I grew up in Rochester, NY where I spent most of my life before taking off on a road trip and ultimately re-rooting my life in Oregon. I am a curious, adventurous soul always seeking creative outlets to get to know myself better. My fire, which usually stems from injustice or unrest, is what sparks passion and motivation in my life. I am quite fond of exploring ideas outside of what I’ve been taught to be certain.

T: What can you tell us about Crohn’s disease and your experience with it?

I: I felt my life draining from my body when I was at my worst with this disease, and if there’s one thing I wish people would understand is that it’s not just “tummy aches” or “bathroom troubles.” There’s so much more to it than that. Crohn’s disease is an extremely serious condition that is lacking a genuine societal understanding.

Here’s the medical lowdown on Crohn’s disease (via Google):

Crohn’s disease can sometimes causes life-threatening complications. Crohn’s disease can cause abdominal pain, diarrhea, weight loss, anemia, and fatigue. Some people may be symptom free most of their lives, while others can have severe chronic symptoms that never go away. Crohn’s disease cannot be cured. Medications such as steroids and immunosuppressants are used to slow the progression of disease. If these aren’t effective, a patient may require surgery. Additionally, patients with Crohn’s disease may need to receive regular screening for colorectal cancer due to increased risk.

I: My main symptoms were stomach aches since birth, which led to a doubling over pain and a couple of hospital visits in my adolescent years. As I approached diagnosis, it became much more grueling than that.

I had a loss of appetite and suffered from extreme fatigue to the point where I couldn’t even drag my body up a flight of stairs. This progressed into extreme nausea and vomiting anytime I did eat, which eventually occurred after only liquid consumption. I had horrible body pain, specifically in my back and towards the end, I spent most of my days in and out of sleep, not truly present or aware that life was continuing outside of my body. At 5’8” I weighed 93 pounds before surgery- skin and bones.

T: Before anyone watches the trailer, what’s some background on the Crohn’s Moans project you’ve been working on? How did it begin?

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I: The Crohn’s Moans started as a Kickstarter campaign which I launched in my senior year of college. I was asking for $20,000 to travel the country filming interviews of doctors and patients with the end goal of creating a documentary not only exposing my life with Crohn’s, but treatment options for those living with Crohn’s, Ulcerative Colitis or IBD. I managed to meet and surpass my goal, and by June 1, 2015 I was off on this grand adventure.

T: How has your experience with Crohn’s influenced the path you’ve taken recently to raise awareness and learn more about it? I’m sure there have been some vulnerable moments along the way, before the documentary began and throughout filming, which have propelled you into telling your story (and mega props to you for that).

I: My life with Crohn’s has been an endless learning curve. Not one day goes by without a deeper understanding of myself, life or other’s situations. As somebody who needs to connect through storytelling, art, or by simply inspiring those around me, my journey with a chronic illness has led me to use these gifts to raise awareness and do my part in finding solace. I don’t have the ability to stand by and witness suffering if I know there is something I can do about it. That is what propelled me into telling my story; I truly believe through the sharing of my experiences and providing possible solutions, I can help those who are in dire need of it.

Being somewhat of a public figure for Crohn’s disease is one of the most vulnerable positions I have yet to put myself in. I have people who look to me as a source of inspiration and in the beginning this put a tremendous pressure on me to not disappoint. Fortunately I have grown beyond my disease and feel solid in the base of who I am, where I am going, and how I persevere. Healing is not linear, for anybody, no matter what you are struggling with. There will be ups and downs no matter how perfect you are and this is where I’ve found the beauty of acceptance and peace within my own body. I am not at war with my body, I am not fighting Crohn’s, I am growing with my challenges and allowing the hiccups to humbly place me back on the correct path. The vulnerability no longer scares me because I know this. I am only human, I can fall and I can get back up.

T: I want to hear about your road trip. What was the prep like? Your thoughts/feelings going into it? Some of the biggest ups and downs, or the craziest thing that happened to you.

I: The road trip! The road trip. What an extremely revitalizing time in my life. The road trip marks the beginning of deeper awareness within my own body, something I had never had the pleasure of knowing until then. I discovered key information about myself that in my opinion is the biggest asset to the movie. I also discovered my extreme love for sleeping in tents and building fires from practically nothing. I had no idea how much my body can recharge from simply putting my bare feet in the dirt and sleeping under the stars. This has become a regular part of my healing regimen.

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I would say the biggest set back during the trip was at the very end. It was the last night of the trip, we stopped in San Jose, CA to sleep with plans to head to Los Angeles the next morning to drop of Jessie, one of my co-videographers. I woke up in the morning only to have the complete shock of my car no longer in the spot where I left it. My car, which had transported me up and down the U.S. from coast to coast, was indeed stolen along with everything BUT the movie, equipment, my main sentimental items, and the clothes on my back.  I later came to learn that this was a lesson in letting go, although I did get my damaged and empty car back a couple of weeks later.

T: What do you hope your trailer and documentary will achieve? How far do you see the impact of the Crohn’s Moans reaching?

I: The purpose of this movie is to offer guidance to those who are seeking more answers than what they’ve already been given. However, it’s not answers I am hoping to provide but more so options, tools and a source of inspiration. Diagnosis of Crohn’s disease or Ulcerative Colitis is often not only heartbreaking, but extremely confusing due to a lack of education on medical professionals part. I was never presented diet options that have been shown to help those living with bowel disease, I was never asked what emotional trauma could have had a hand in the progression of my sickness, I was never told there was hope of not suffering with this disease forever. Furthermore, I wasn’t given tools to deal with the lack of societal understanding I would encounter on a regular basis as I continued my life with the diagnosis of Crohn’s disease.

This movie isn’t grim. This movie isn’t a “woe-is-me” story. It’s exciting, fun, light-hearted while still communicating the seriousness of the issue at hand. It’s a story of my personal journey, take it or leave it style, and it will be entertaining whether or not you are living with health complications.

I: When and where will we be able to see the documentary?

The documentary is set for release in 2017, but the date is to be determined. There is still much to be done and I am still working out exactly how I will be releasing. I do have hopes of submitting to some bigger name film festivals but am also interested in local ones specifically Rochester, NY and Portland OR. There have been thoughts on my end of possibly touring with movie in 2018. Those who helped fund the Kickstarter campaign will have access to the movie first.

T: Who has been your biggest influence throughout this journey, and who do you hope to inspire?

I: Every single person that has directed me to look within. Every single person that has given my body love and attention in the ways that I personally needed it. This has been a collective effort. I hope to inspire anybody who needs a little reminder as to why they are so great and capable of a beautiful fulfilling life.

Well, damn. Pretty much the coolest girl ever, right? It was 2BD’s pleasure to help, in some small way, to tell Ivana’s story and promote her brilliant work. We’ll be anxiously awaiting the release of the full documentary, but view the trailer below for a sneak preview, visit her website, thecrohnsmoans.com to learn more and give her a follow on social media.