Feeding Tube Awareness Week

In the past year and a half of my life I have met more people with feeding tubes than I ever have in my life.

Lets backtrack. My life has never been surrounded by health. For the first two decades of my life I was searching for a diagnosis nowhere to be found and in and out of hospitals for impactions and injuries. Compound this by knowing that my mother, who passed away when I was 9, was seriously ill almost my whole life and I was her care taker. I saw the insides of more hospital rooms than I ever should have. And yet, I never saw anyone with a feeding tube, nor knew what they looked like until very recently. I find this a weird thing not only because I’ve been in so many hospitals but also because my mother’s primary illness was anorexia. A common treatment for anorexia is to literally force the patient to eat by giving them a feeding tube. Yet, my mother never had that.

Now fast forward, about two years ago I started having severe GI problems and still searching for an overall diagnosis. Soon after I met many online with the same issues as me. I went on to get diagnosed with EDS, and a common co-morbidity, gastropariesis. I have learned since then that many people with EDS and GP, and many people with GP overall, have feeding tubes. Its almost inevitable because of the viscousness of the disease.

Now I have learned that feeding tubes aren’t a curse, but a blessing. They drastically improve the quality of life for SO many people with GI tract issues and allow them to lead a good life free of nutritional issues and vomiting that have plagued them. The people I know with feeding tubes are married, some have kids, and many of them work and go to school. I am so proud of all of these people and hope that they continue to recieve great care.

I am actively trying to receive better care for my GP and get better nutrition. Today for example I have eaten a few pieces of bread, a slice of cheese (which I threw up), some french fries (which I threw up), and a smoothie. That is it. I think that a feeding tube would greatly increase my quality of life and allow me to pursue my dream of becoming a rabbi. My doctors all have a negative view of feeding tubes and dont think its an option.

Lets use this week to make the negative image of feeding tubes into a positive. Lets not talk about what you cant do with a feeding tube, but what you can. Lets stay #tubiestrong and keep showing doctors that feeding tubes aren’t shameful or something to be avoided, but something to be celebrated and relied on when needed.

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