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18 months later as a tubie

I know it has been a while since I last updated y'all on my progress with living with a GJ tube. It has been an experience! I've had to 9 tube replacements due to my tube moving, twisting and countless clogs. After so many issues, my gastrointestinal surgeon felt that I needed better assistance from the Internal Radiation team or IR for short. With the IR team, instead of the GJ tube being replaced through endoscopy and replace while I am awake but giving something for pain. The first time I had it done, I was very nervous because of knowing I would be awake for it. I was able to watch the team set up the room with the monitors and the x-ray machine over me so they can see where to go. I have a completely different tube than I had from 11 months ago post. The photo above is me now. I can say I have had only 2 clogs with this new tube and it was so easy to unclog with a can of Coke. I'm still adjusting to live with having this GJ tube forever but I'm being patient with myself during the process.
#EhlersDanlosSyndrome #Gastroparesis #GJtube #FeedingTube #LifeasanEDSerwomanofcolor #MastCellActivationDisorder #posturalothostatictachycardiasyndrome

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#FeedingTube #EhlersDanlosSyndrome #Dysautonomia #TPN #GJtube #PiccLine

I’m looking for people who have any type of alternative nutrition. I’m struggling a lot with it. Don’t know where to post this. I have so many questions.


How long after getting a GJ tube does the pain last?

#ChronicIllness I got a GJ Tube placed on August 3rd and I am still in such excruciating pain to where it’s not getting any better.
I was wondering how long the pain usually lasted for everyone else? Or if my body just doesn’t like the tube.
#Gastroparesis #ChronicPain #GJtube #FeedingTube

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Does anyone know what these are for?

I was wondering if anyone knew what they plastic “buttons” were for next to my GJ Tube? My doctor never told me and I don’t see him for a few weeks so if anyone could help that would be great. Thank you!
#GJtube #GIDisorder #FeedingTube #Gtube #Jtube #Stomach #stomachpain #ChronicIllness #ChronicPain #EnteralFeedings #Surgery #GI #help