TikToker @nauseatedsarah lives with intestinal failure as a result of Ehlers-Danlos syndrome, meaning that she receives nutrition through an IV that leads directly into her heart.


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Sarah chronicles life with her condition, which is called gastroparesis, on her TikTok, and in one recent video, made for Home Artificial Nutrition Awareness Week, walked viewers through the process of setting up her TPN, or total parenteral nutrition, which bypasses her paralyzed gastrointestinal tract.


Questions she’s commonly asked about her TPN include whether she still gets hungry — no, because she’s receiving all the calories she needs and keeping her blood sugar stable, although her stomach still rumbles sometimes, which she describes as “audacious” — and whether or not she misses eating — no, because eating has caused her pain and illness for almost her entire life.


To receive nutrition through her TPN, she attaches a Hickman line to her chest underneath her collarbone and over and into the top of her heart. The Hickman line delivers nutrition directly into her bloodstream, which she cannot feel, although she can occasionally feel it if the liquid is too cold, as it makes her heart flutter.


The process of setting up her TPN is quite involved, as the environment has to remain sterile at all times, otherwise Sarah risks getting sepsis. The TPN runs for 12 hours overnight until she wakes up in the morning, at which point she disconnects everything and gets on with her day without having to carry any feeding equipment around. The emulsion contains all of the nutrients and calories she needs except for vitamins, for which she takes a multivitamin tablet instead. It keeps her hydrated as well, although she can drink a little bit if she’s particularly parched.


 

Because this is the internet, another one of the most commonly asked questions Sarah receives is whether or not she has to use the bathroom or not. Sarah has generously answered this question, and the answer is: Yes, she has to pee a lot, since she’s ingesting two liters of fluid every night, and yes, she still poops.


Sarah is currently raising money for an electric wheelchair, since her Ehlers-Danlos syndrome results in constant dislocations of her joints and makes walking incredibly difficult and painful. As a token of gratitude for all her candor, you can contribute here.