Five Years Ago, She Started Dying — Now She's Teaching The Internet About Life With Crohn's Disease

    "I just want others who go through what I go through to feel a little lighter, a little happier, and maybe a little bit more confident in what they have."

    Like many of the other 2 million viewers, my first introduction to Shay Haberstroh was a viral video where she feigns shock while the message "Realizing I'll shit into a bag forever" played across my phone screen.

    Her horror quickly dissolved after taking a second to consider her chronic illness and flipping her diagnosis into a positive by appreciating her butt and sharing the tongue-in-cheek plus side: "My asshole will be permanently clean."

    Having successfully caught my attention, I scrolled through her TikTok page and pieced together three key facts. For one, Shay, like many 24-year-olds, loves makeup, cosplay, and sharing her life online. Two, she has a boyfriend who is undeniably in love with her. And three, Shay almost died five years ago, and now, with unmatched humor, she's sharing her life without a large intestine and her continuing battle with Crohn’s disease.

    By May 2016, Shay had already battled Ulcerative Colitis and had her large intestine removed. And though the human body can live without the large intestine, the small intestine is far more critical for absorbing necessary nutrients. So, when her small intestine became perforated with holes and bowel obstructions began developing, Shay went septic.

    @shayshitsinthebag

    I’m so thankful my latest bowel obstruction has already started to pass and that nothing like the last time happened 💖 so so scary to go thru it all

    ♬ original sound - shay 😵‍💫💖

    The sepsis — which occurs when the body's attempt to fight off an infection damages its own tissue — began leading to organ failure, and teenage Shay was put in an eight-day medically induced coma to give her body a chance to rest and recuperate.

    "The most challenging part was how much from before my coma that I had forgotten," Shay told BuzzFeed. "Learning how to speak, and then walk again — all while learning how to take care of myself and my disability physically — made me feel so much weaker than I really was."

    Shay hooked up to an IV and standing outside in front of a car

    Now, as she nears the five-year anniversary of waking up from life support, Shay is answering questions that people are too afraid to ask about life with an ileostomy bag.

    Some viral asked and answered Qs include: How do you know when you need to ~go~?

    "I never feel when I'm going," Shay shared. "There's no control, so that's why the bag stays on at all times. The only times that I can feel that I'm about to go is when I'm pushing through maybe thicker, harder-to-eat foods that aren't as easy to digest. Otherwise, I just go. So it's scary when I change my bag."

    "Can you still do anal?" another commenter asked.

    "This is so personal, LOL," Shay responded in a video. "But yes, some other ostomates [a person who has had an ostomy] can't though."

    "The most commonly asked question about my bag would be ‘Do you still fart?’" Shay told BuzzFeed. "I get the curiosity! [The] answer is — not like you would. There is no lower connection anymore, so everything from gas, actual stool, etc. goes right into the bag."

    When gas fills the bag, Shay releases it over a toilet. 

    The 24-year-old's openness not only brings in curious questioners, but also views. A video of her changing the ileostomy bag brought in half a million viewers.

    "For me personally, I change my ostomy [bag] about every 3–4 days," Shay said.

    Many commenters shared an appreciation for Shay spreading awareness about living with an ostomy bag...

    One person said, "I love that you shared this with us. 1 It spreads awareness & 2 It shows us what a lot of people go thru on a regular basis. Kudos

    ... which even healthcare workers can sometimes forget the ins and outs of.

    "When I was first diagnosed...I was 16, uninformed, and scared to death," Shay said. "During that time, I told absolutely no one of my bag and actually went through worse hiding it then if I was just open about it. So years later, when it seemed like I was getting the bag again, I vowed to myself that I would never do what I did to myself mentally years ago."

    "I hope that other people with ostomy bags feel more comfort in being themselves," Shay added. "I still know so many humans with the same thing as me who will barely tell anyone what they’re going through, and I just know how mentally difficult that can be on a person. So if I want anything to change from the advocacy that I’m bringing to the public, I just want others who go through what I go through to feel a little lighter, a little happier, and maybe a little bit more confident in what they have."

    If the comment section is any indication, Shay's videos are already helping on that front:

    Someone asked, "Can you teach us more about your condition? If you don't mind

    If you want to keep up with Shay and her journey, you can follow her on TikTok or Instagram.

    You can also donate to the Crohn's & Colitis Foundation, a nonprofit organization dedicated to finding a cure for Crohn's disease and ulcerative colitis.

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