"The Crohn’s Moans"
UB student travels across the United States while documenting her life with Crohn’s disease
In 2009, Ivana Bosek thought her 15 years were coming to an end. Her 5-foot-8, 93-pound frame lay bedridden, unsure of what was causing the agonizing pains in her stomach.
A year later, she was diagnosed with Crohn’s disease.
Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract. Bosek had an inflammation where her small intestine and large intestine came together which created scar tissue and a stricture, not allowing food to pass through. She threw up excessively.
Once she had surgery, her life took a turn for the better.
Bosek, a 22-year-old senior contemporary marketing major from Rochester, New York, is still fighting Crohn’s, but now with a camera crew and a new vision.
In two months, Bosek plans to travel across the country while producing a documentary called The Crohn’s Moans. She will be speaking with physicians and patients from different cities while trying to answer questions that she and other Crohn’s patients have always asked about the disease.
Bosek created a Kickstarter campaign to raise $20,000 by May 13 for the production of her documentary.
She is excited to share footage of her journey to the west coast but is also taking the audience back to her diagnosis when the idea for the film first started.
Scene 1: The diagnosis
Ever since Bosek was a child, she had severe stomach problems.
Bosek has distinct memories of leaning over buckets and laying on the bathroom floor so the cold tile would touch her face and ease the discomfort. She would throw herself over railings and tables to try to get rid of the sharp pain in her abdomen.
“It’s like you’re in this body that isn’t doing what it’s supposed to do,” Bosek said. “You’re in so much pain that you feel stuck.”
Bosek’s health rapidly declined during her junior year in high school. She lost weight quickly, had no appetite and was extremely fatigued. She knew something was wrong.
When Bosek was 15, she was misdiagnosed with mononucleosis for a year. Her pediatrician didn’t take her case seriously, she said.
“At the time that I was diagnosed, a lot of Crohn’s patients go through that where their doctors don’t take them seriously because they had stomach problems and everyone has stomach problems,” Bosek said.
According to the Crohn’s and Colitis Foundation of America, 1.6 million Americans have inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis. Most people are diagnosed with IBD before the age of 15.
Bosek said she and other Crohn’s patients consider Crohn’s an “invisible illness.” On the outside, they look like nothing is wrong. But on the inside, each day is different.
One morning, Bosek was in such pain that she went to see her pediatrician. Her pediatrician told her she was just having stomach problems and couldn’t be bothered by her, Bosek said.
Bosek and her parents were angry and frustrated and went to a new doctor who accurately diagnosed her with Crohn’s disease. She was 16 at the time.
“We were extremely frustrated and felt very helpless,” said her mother, Carol Ann Bosek. “We didn’t know why she was fading away.”
Carol Ann said Bosek was so frail and weak that she couldn’t eat and had to be put on a liquid diet. There were times where she would faint at school and had to come home.
Bosek was excited to learn she had Crohn’s, as “twisted” as it sounds, she said. She was just happy to finally have answers.
But doctors weren’t able to give her all the answers. She still doesn’t know what caused her to have Crohn’s disease. Doctors have told her it could be genetic, environmental or from her diet.
After MRIs, heavy medications and waking up during a colonoscopy, Bosek decided to meet with a surgeon.
At the time, she was so frail that they couldn’t get IVs into her for a CAT scan. Her surgeon didn’t have a clear plan but decided surgery was the only option.
Bosek still has the scar on her stomach where 16 inches of her small intestine was removed.
She said surgery isn’t the answer for all Crohn’s patients, but it did change her life significantly.
“I was in the hospital for five days and recovered in another five days and then I went to junior prom,” Bosek said. “It was amazing, I was a completely normal person again.”
Scene 2: The recovery
After graduating from high school, Bosek lived life like the average college student for her first three years at UB.
“I got to go out with my friends, stay up late and pull all-nighters for exams,” Bosek said.
Bosek was a film major when she first came to UB. After her freshman year, she decided to go to Los Angeles to work on a documentary. She was offered a job as an editor for the documentary but after three days in L.A., Bosek realized she wanted to come back to UB with a new plan in mind.
She came back to Buffalo the second semester of her sophomore year and designed her own major called contemporary marketing through social media, a combination of communication, marketing, design and media courses.
She created a curriculum and met with a special major adviser before the dean approved. She will graduate May 17 with her special major degree.
“I wanted to get into social media and learn how to market myself as an artist,” Bosek said.
But coming back to UB and jumping into new courses wasn’t the smoothest transition.
Since Bosek’s surgery, she’s had to make a lot of life changes. Her diet, social life and schoolwork had to be altered because of stress management.
Bosek is still taking medications. She is currently on Cimzia, an immune depressant that causes her to get sick easily. Patients treated with Cimzia “are at an increased risk for developing serious infections that may lead to the hospitalization or death,” according to cimzia.com. Lymphoma and other malignancies have been reported in some children and young adults.
Bosek administers the stomach injection to herself once a month.
On top of being a vegetarian, Bosek has to eat gluten-free and has to stay away from processed foods, whole grains and excessive alcohol consumption.
Bosek enjoyed the nightlife during her first three years of college, but she eventually had to learn how to say no to parties during her senior year.
“Now that it’s 2015, people seem to be more aware of what Crohn’s is, so everyone has been much more understanding,” Bosek said. “But when I was first diagnosed, there wasn’t much awareness.”
Bosek said a lot of her friends didn’t realize how severe her disease was because they were new friends she made after coming to college.
Bosek and Shannon Trubatch, a senior biological sciences major, met through Facebook their freshman year while looking for roommates. Their four-year friendship has been strong ever since and she has been with Bosek during some of her worst flare-ups.
During the summer of 2014, Bosek’s health started to worry her again. She has learned not to stretch herself too thin and to only take on a workload she can handle.
Bosek’s health and the Kickstarter campaign has caused tension in her relationships with close friends. She said it’s difficult for someone who doesn’t have a chronic illness to understand what she’s going through at all times.
“At times, [Crohn’s] has put a strain on our relationship, especially during times when it got more severe,” Trubatch said. “Once I understood better why she was getting so upset, I could respond appropriately and be a better friend and support system.”
Bosek also spent some of her toughest times with her boyfriend, Dylan Bromley, who graduated from UB last year. Bosek and Bromley went to the same high school and have been dating for over a year.
Bromley said all it takes is one little slip to be back at square one. Watching Bosek fight for a healthy lifestyle is the hardest thing he has had to witness.
But Bromley never felt Crohn’s was a threat to their relationship.
“Her ambition to make herself better and the strength she displays through fighting the disease are things that make me attracted to her,” Bromley said.
Since Bosek’s last heavy hit this past summer, she decided she wasn’t going to stay in bed. She wanted to capture each moment for the big screens.
Scene 3: The Crohn’s Moans production
In high school, Bosek was determined to travel and start her own film. During her sophomore year of college, she shot footage of herself during doctor visits and MRIs.
“This year I started thinking about the impact I wanted to make on the world and who I wanted to tell my story to,” Bosek said.
The Crohn’s Moans logo is an illustration of Bosek’s stomach scar turning into flowers to represent her transformation during this experience.
Bosek said she has an alternative look on how Crohn’s should be treated and that’s what made her want to film and produce her own documentary. She will start her journey June 4.
“I will be talking to conventional gastroenterologistswho believe drug therapy is the only way but I’ll be adding other perspectives so that patients see that it isn’t the only thing available to them,” Bosek said.
During the documentary, the audience will follow Bosek through her two-month road trip to New York City, Chicago, Colorado, Oregon, California and Seattle where she will film interviews with physicians and patients.
But Bosek’s big dream will cost her.
She doesn’t have an exact date as to when the film will be finished. It all depends on how much money she raises and whether or not she has to find a job during production, she said.
She limited herself to $20,000, a budget solely on donations she hasn’t fully received yet.
Bosek created the Kickstarter campaign to raise funds. Traveling, hiring a production crew and getting proper equipment will be most of the cost. She has only raised just more than $7,000.
Bosek will not be making any money from the film. All of the donations will go directly toward production.
If she runs out of money, she could be homeless – one of her biggest fears.
“I’m afraid that I’ll finish filming and have to work just to pay the bills and not be able to throw myself into the project like I would like to,” Bosek said.
Her biggest fear is the Kickstarter campaign not being fully funded. But it’s not all about the money, Bosek said. It’s more about telling the story and providing hope.
Regardless of her worries, Bosek’s friends and family believe she is more than capable of completing a successful film.
“I’ve seen her skills grow over the last few years and I have no doubt she can put together a cohesive, interesting piece that is both entertaining and informative,” Trubatch said.
Although Bosek’s mother is nervous about her traveling across the country, she is happy and excited for her daughter’s journey.
Bosek will be traveling with other film students from different schools. Almost the entire production crew will be college students and graduates, she said. Once the film is complete, she will be submitting The Crohn’s Moans to film festivals across the country.
“Ivana [Bosek] has an open mind and a beautiful heart, so all of the [future] possibilities are endless,” Trubatch said.
Gabriela Julia is the senior features editor and can be reached at firstname.lastname@example.org