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Tubie Stories - Kristie

As part of Feeding Tube Awareness Week we are sharing stories from members who have Ehlers-Danlos Syndrome and use feeding tubes.

Today's story is from Kristie


I have been tube fed for 2 years now. I remember when I originally got the feeding tube, it was a tube that went through my nose into my stomach. I was terrified and had no idea what to expect. Learning how to care for my new medical device was overwhelming and took a lot to adjust to.

Because of how Ehlers-Danlos Syndrome (EDS) has affected the connective tissue in my digestive system I have trouble swallowing as well as my stomach being partially paralysed from a condition called gastroparesis. Because my stomach works so poorly I rely on a feeding tube for most of my nutrition.

Two years after my first tube was inserted, and after having a tube in my nose (Nasojejunal Tube) for 18 months I swapped to a longer term option called a gastrostomy-jejunostomy (GJ) tube. A GJ tube is a surgical feeding tube that goes through my abdominal wall into my stomach and then to my Jejunum (part of small intestine) I was amazed to find once recovering from the surgery that the tube actually doesn’t hurt, and once healed I would at times forget it was even there!

It’s a common misconception that people who have feeding tubes can’t have anything orally when in reality there’s many different reason as to why someone might need a feeding tube. I personally can have small amounts to eat and drink for enjoyment while someone else may be nil by mouth.

Although there are times I wish I could eat without a problem, feeding tubes saved my life and help me to keep flourishing.


For more info on feeding tubes check out our post here

For another EDS Tube Story checkout Lily's story.

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