The name of Ivana Bosek’s website helps explain the frustration she feels over the autoimmune disease that has troubled her since childhood:
Her stomach pains started in infancy and have been a source of hurt and discomfort, off and on, through her life.
Pediatricians told her parents the stomach aches she suffered were all in her head, but one ordered a CT scan when she was 10 to prove to her family that she was fine, Bosek said.
Six years later, before she underwent surgery, her surgeon told her that her ilium – the final section of the small intestine – was inflamed in the CT images, and signaled she was prone to Crohn’s disease.
“The problem with ulcerative colitis, inflammatory bowel disease and Crohn’s is that doctors don’t always take it seriously. They see it as a child complaining about something or looking for attention. That is what happen to me,” said Bosek, who had 16 inches of her small intestine removed during that surgery, and is subject of this weekend’s Healthy Response feature in WNY Refresh.
The 22-year-old Penfield native will graduate next weekend from the University at Buffalo with a bachelor’s degree in a major she designed for herself: contemporary marketing through social media.
During her college years, she has used a mix of medication, mindfulness and better nutrition to keep her Crohn’s in check, most of the time.
After graduation, Bosek will set out on a cross-country journey to interview doctors, holistic health providers and fellow Crohn’s, colitis and IBD sufferers to find out how others are dealing with these autoimmune diseases. She hopes to raise $20,000 by noon Wednesday through a kickstarter campaign to create a videography to share what she learns: kck.st/1IhAGfb
“As much as doctors will tell you it’s this, this or this,” she said, "they don’t know for sure what causes these conditions. You can learn from one doctor it’s genetic, from another it’s environmental, from somebody else that it’s highly due to your gut-mind connection – with your gut being a second brain. You can have doctors tell you your diet doesn’t play into it at all, which to me is ridiculous. There really isn’t a set answer. …
"I believe the gut microbiome has a lot to do with it. I believe environment has to do with it, your diet has to do with it. Your mind has to do with it. All of those things combined are going to make or break you.”
Bosek has enlisted the help of a New York University film studies major to join her on her journey, which starts June 4 when she interviews a gastrointestinal specialist in New York City. She also plans interviews in Maine, Maryland, Michigan, Ohio, Chicago, Colorado, Seattle, British Columbia and several spots in California.
Bosek looks to share part of her story. As a teen, she went from playing basketball, softball and soccer to being constantly fatigued.
“All of a sudden, I had chronic fatigue,” she said. “I couldn’t get myself out of bed some days. I had an extreme loss of appetite. These were things that were added onto the stomach aches. …
“From there I went through testing and a bunch of different medications,” added the 5-foot-8-inch college student, who weighs about 125 pounds. “I was down to around 100 pounds and got down to 93 pounds right before my surgery.
“The difficult thing is that every GI doctor has a different opinion about what you should do to treat it. Many of them are opposed to surgery, for a good reason, but my case was really too far gone.”
Here are more excerpts from our recent interview:
After your surgery, what did you do in terms of lifestyle choices?
I was a little bit stubborn. I wouldn’t say I was a bad eater before everything happened, but I definitely loved my sweets and wasn’t the healthiest eater I could have been. After my surgery, I could eat whatever I wanted without pain, without getting a stomach ache. I was very young and excited to have this pain-free life I’d never experienced before, so I didn’t make drastic lifestyle changes until I was a sophomore in college. That’s when I decided to go gluten-free and start making some efforts at eating healthy. In the past two years, it’s gotten so much more intense than that.
I really have taken care of my health. It’s an all-over body experience. You have to take care of your mind, make sure you get enough sleep. You have to take care of your stress levels, make sure you’re eating the foods that are good for you and staying away from foods that are going to cause your health to decline. You have to stay away from processed foods in general. It’s a pretty strict lifestyle but it’s something I wouldn’t change. It’s caused me to be really in touch with my body. I’m in tune with what’s going on most of the time.
What are the staples of your diet?
I eat a lot of avocados because you get a lot of healthy fat from avocados and they tend to be really gentle on my system. Something new I just discovered are goji berries. They tend to keep moving in the digestive tract. They also break down slowly, so you don’t have a sugar rush. I eat gluten-free as much as possible.
I started a lifestyle of drinking as little alcohol as possible. Being a college student, that was a difficult thing to accept, because there’s a huge social aspect of it. I believe if I limit it to a couple of drinks a week or every other week, I can fit that into my lifestyle, but I can’t be a college student who’s into binge drinking. Anybody who suffers from gut problems can’t be doing that.
I’m a vegetarian by choice. It isn’t associated with the Crohn’s. I try not to eat too much lettuce, or things that are going to be a little too difficult to digest. I eat a lot of steamed veggies. I make a lot of stir fries. I stay away from dairy as much as possible. I notice that irritates me. I try to be as strict as possible but it’s not always consistent.
Talk about the medication you take, Cimzia.
It’s not really fixing the problem; it’s reducing your body’s reaction to something that’s happening. It’s an autoimmune disease, so I’m on an immune suppressant so my body doesn’t attack itself. There’s plenty of doctors who are more forward-thinking who believe that’s probably not the right way to go about it.
Are there any online resources you’ve found particularly helpful?
I tend to not think that the CCFA is the best resource. I think it will grow into a good resource, someday. I don’t believe they provide enough information about the proper alternative healing.
If you’re someone who’s just diagnosed with Crohn’s, you’re going to go on the CCFA site. They have a section for the newly diagnosed. They don’t really get into diet, so I tend to look more at Facebook groups that are geared more toward holistic healing. There’s a really cool foundation that’s becoming pretty popular called Crohn’s Journey Foundation. It was started by this girl who believes in combining Eastern and Western medicine. Support groups like that are cropping up all over the place.
It also depends on the treatment you’re looking to try.
FMT is one of the topics I’m going to be covering (in the film). I have two people – one in Seattle and one in California – who have either done FMT or are trying it right now. That’s a really interesting approach and there’s two Facebook groups right now. There’s also a bunch of blogs, and Instagram is really good if you’re looking for some inspiration. Instagram has a huge IBD community.
What have you lined up already?
There’s going to be three aspects to the film. I want to provide information for those who are currently struggling with these conditions. I want them to see I have overcome what I have been dealt, and continue to follow my passion to travel and explore and find answers.
Another aspect is helping others gain awareness of the severity of these conditions. A lot of people don’t understand how bad these conditions can be. A common phrase that people who have colitis, Crohn’s or IBD hear is, ‘You don’t look sick.’ Anybody who has those conditions gets really frustrated by that. A lot of us call it, ‘The Invisible Disease’ or ‘The Invisible Illness.’ Just because one day we’re sick and the next day we’re not, it’s frustrating that people don’t understand sometimes we can’t do what most people can do. Even now I have days where I just can’t get up and go to class. I’m fatigued. It’s more difficult for me to get up than the average person.
I want to create more awareness about what these conditions actually do. They’re not just bowel diseases. They affect so many different aspects of our lives. We need a societal understanding. The main focus of that is getting the information out about these diseases. If you’re sick, you don’t have the energy or the time to get on a computer and research all of these alternatives and (treatment) methods. They need someone to lay out their options.
I think making a film and combining information about all these methods is the easiest way to get people’s attention.
I have future plans, too. It’s not just the documentary. I want to continue producing videos and information so people continue to have access to this information.