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Sara Gebert hasn’t eaten in two years and has multiple tubes coming out of her stomach. Still, that hasn’t stopped her from doing things she loves, like going to the beach and rocking a bikini. And on a recent vacation, a random stranger made it a point to acknowledge her bravery.
The Pittstown, New Jersey native suffers from a rare condition called Chronic Intestinal Pseudo Obstruction. “She is fed overnight straight into her heart with Total Parenteral Nutriton (IV nutrition),” according to her blog, Sara’s Army. “She has to drain her stomach 24/7 because her body is unable to contain its own digestive contents. Without the bag draining her stomach, she will throw up, sometimes over 60 times a day even on a completely empty stomach.”
In other words, going to the beach in a bikini is not a small thing. In a post written by Gebert on The Mighty, she describes being scared when the woman walked up to her on her recent trip while she was wearing a bikini that revealed her various tubes. But when the woman started speaking, Gebert was immediately put at ease.
“You saw me for who I really was—a scared girl who was trying so hard to not let anyone see the fear in her eyes,” the 19-year-old wrote.
She wrote she decided to “let it all hang out” on her vacation, exposing her ileostomy, G-tube and J-tube, which all protrude from her stomach for all to see.
“I’m not sure you could tell, but I was stunned,” she continued, addressing the woman. “I’ve had people approach me and call me gross or ask me, “Are you really going in the pool like that?” And when you came up to me, I was preparing for the worst. But what came next still has me in awe. You thanked me for rocking my bikini, told me about how you used to have an ileostomy as well and how you no longer have a large intestine. You told me I was inspiring. That honestly meant the world to me.”
Gebert is very open about her health struggles. She’s a vocal advocate for Chronic Intestinal Pseudo Obstruction awareness and started Sara’s Army to educate others about the condition, which 150 people are diagnosed with each year.
But just because she’s open about her journey, doesn’t mean that she’s not insecure like the rest of us.
I am still in a lot of pain and the nausea is crazy but I’m am taking baby steps towards recovery from my surgery! Now my belly is all covered in equipment. I have my g tube and my j tube as well as my ileostomy and my mace (appendicostomy) tube. Hopefully all the pain will be worth it! #chronicintestinalpseudoobstruction #chronicillness #gastriparesis #gtube #jtube #ileostomy #ostomy #appendicostomy #macetube #belly #getyourbellyout #ouch #thissurgerywasthemostpainfulthing #itbetterbeworthit #ilovemysurgeonthough #helovesmetoo #crazyoperationsarefun #notforme #buthelovesem #holybelly #imholierthantho #iwishiwasnt 😂😂😂💉🏥 I want to go home!
A photo posted by Sara (@sgebert13) on
I think I need some more wires, cords, bags and iv tubing connected me. This is clearly not enough. There is beginning to be a big discrepancy between what I plan of treatment I should be taking. I trust my surgeon way more that the grumpy nephrologist I met two seconds ago so whatever his suggestions are that’s what I’m going with.
A photo posted by Sara (@sgebert13) on
Gerbert closed by telling the woman how grateful she was that she approached her.
“So thank you. Thank you for restoring my faith in the good of people. Thank you for allowing me to feel comfortable in my own skin. And finally, thank you for giving me the confidence to enjoy my vacation to the fullest extent.”
Marisa Kabas is a lifestyle reporter and activist. Her work has been published by Fusion, Fast Company, and Today. She’s also served as an editorial campaigns director for Purpose PBC, a social movement incubator.