Me and my feeding tube

This week it's tube feeding awareness week so i thought i would do a blog post about me and my feeding tube.

I have a condition called Ehlers danlos syndrome which is a connective tissue disorder. It has taken my ability to walk but also effects my organs. My stomach has failed due to gastroparesis, which means it can't empty properly due to the muscles or nerves not working.

I went into hospital in June last year to be put on tpn ( which is where nutrients go into a vein) and bypasses the organs. I wasn't well enough to undergo the operation to have a feeding tube fitted.

My first operation to put a feeding tube in failed ( it is usually done in endoscopy). So i had to have it put in surgically.

My tube is called a pegj. It is basically a tube within a tube. One tube goes into the stomach ( brilliant if you want to empty your stomach from eating loads of chocolate hehe ) . The other tube goes into my jejunum which is where i am fed.

This is the equipment i use to feed. I am hooked up 24/7

My feed and pump.

Giving set which the feed comes through, syringe i use to flush my tube to prevent it blocking and sterile water as the intestine cannot take normal water.

A couple of questions i often get asked

Q. Can you still eat
A: yes but very very tiny amounts, maybe a tablespoon of something and then i am very full

Q: do i get hungry or miss food 
A: i don't get hungry very often and i get very full on a tiny amount.
I don't miss food. I think i am lucky in this respect. I love food i love baking but i never fancy eating it. Weird thing is i love to know what everyone else is eating hehe.

Q: Do you stop going out for meals with family

A: no i love going for meals. Often my family will order something and get an extra plate. This means i can have a spoonful of potato or something so i am included.

Q: is it for life

A: yes probably, but i don't think about it as i take one day at a time.

My feeding tube has saved my life. Without it i would not be here.I hope this has explained a few things. Feel free to ask any questions x 


  1. Hi Hayley
    Thanks for the info.... You are one brave girl....
    It has just stared raining here in Gibraltar... But it's so mild....
    Just going to make a wedding card...
    What are you making or sewing at the moment....
    Hugs Sylvie xx

  2. Hi sylvie. Its very cold over here. I'm in the process of making a fabric cover for my laptop. One side is done just got to sew the other side. Hopefully will get sometime in my craft room over the weekend. Can't wait to see your wedding card. Your like a card production line hehe x


About Me

About Me

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Loves textiles, stitching and anything cute. Daily battle with ehlers danlos syndrome, gastroparesis and tube fed x