#peg-j

[the-withering-system]

Oh your surgery should be in January 2025

Oh it should be July!

Sorry it should be October now we know you've been waiting 2 years already but oh well

Oh no no you don't get a timeframe we've actually pushed you down to a category 3! We're only booking Category 1s! Good luck not needing to go back on TPN fucking cripple

Oh you've provided NUMEROUS PAPERS FROM DOCTORS SAYING YOU NEED THIS SURGERY SOONER WELL FUCK YOU AND DIE

We wish we could do something to help our partner but hospitals are CUNTS (our partner deserves the world not this runaround just so he doesn't have his organs shutdown)

His surgeon and gastroenterologist are amazing but systems fucked

[chronicdragonwarrior-blog]

Feeding tube PSA

Just wanted to post how I have been keeping my tube open and even getting clogs out of my peg-j. Every night before I go to bed I take ⅛ tsp baking soda and mix it with 30cc of water I then draw up 10cc into a syringe and push that into the tube and let it sit while I take my dog out and do my nightly routine, I then flush with water put my meds through the tube and reconnect to my feeding. I'm on 24hr feeds. This clears all the build up off the sides so I don't have to wake up every 3 hrs at night to flush. If I get a clog I do the same except I make it a stronger mixture and try to get as much fluid out of the tube to get the mixture into it. I have to let it sit longer as well but so far I haven't had to use the more expensive clog zapper which my GI and his fellow were completely on board this week with me using at home if I get a blockage. If you have sodium restrictions you really should speak to your doctor before doing the baking soda method. Just thought it might be helpful for someone else out there.

[chronicdragonwarrior-blog]

Tubie Problems

Ok that’s a new one. Just went to pause my pump to flush the tube. Guess who turned it off to do their nightly anti-clog routine, etc and then hooked back up, even remembered to plug it in but never turned it back on? Seriously?

[chronicdragonwarrior-blog]

Must I?

Picking out clothes to wear use to be fun now it's like "Must I really wear pants to the dentist office?" Nothing fits right anymore and it's a mental challenge plus the energy to actually get ready to go anywhere.

[chronicdragonwarrior-blog]

Am I the only one?

I know I can't be the only one who gets tired of taking medications day in and day out. I can't be the only one who gets tired of the up keep and being connected to my feeding pump 24/7 even though I know it's what is keeping me alive. This morning just because I was tired and lazy I stayed off it for 5 hrs and I wasn't even doing anything that it would have been in the way. Shout out to all of you who keep on keeping on despite the tired. And a shout out to you even when you skip your meds or don't do what you should once in a while.

[chronicdragonwarrior-blog]

My stomach lies to my brain, it sometimes pretends it is happy and hungry and my brain believes it and my tongue tells my brain it wants something yummy and then a few bites into it my stomach is all..."What the hell do you think you're doing?" #gastroparesislife

[chronicdragonwarrior-blog]

#smallworld The doctorate student at the MD's office today knew what Gastroparesis was. She also knew a little about Ehlers-Danlos syndrome, unfortunately it is because she has a friend who has a g-j tube because of Ehlers-Danlos and who also has Chiari malformation.

[chronicdragonwarrior-blog]

Clogging issues

I could really use some advice from you tubies out there. I've had my peg-j for 28 days now and it has clogged once to the point my doctor sent me to the ER to get it unclogged with the warning of possible admission for replacement of that didn't work. Luckily the clog zapper worked. In addition it clogged a few days before that and took me close to 3 hrs to get it unclogged. I am now flushing it with 60cc of water every 5-6 hours which means waking up in the middle of sleeping to do so and I am still getting a lot of build up in the j arm, sluggish flushes and temporary clogs that are requiring a bit of force to move through. Does anyone have any suggestions? What do you do to keep them patent?