why I have a GJ tube

Why do i have a GJ tube?

I have a stomach condition called gastroparesis. It means partial or total stomach paralysis. I use the J portion to feed and the G part to vent/drain stomach contents that build up. My tube allows me to still enjoy some things orally. So, I can have small amounts of mashed potatoes, Jel-O, soda, breads, or small amounts of ice cream. Dairy is debatable with GP though as some people cannot tolerate it. On good days, I can have small amounts of grilled chicken and if I have any vegetables, they have to be cooked to almost mush. No raw fruits or vegetables because of the fiber content. I love my tube, and without it, I  wouldn’t be alive.

Ray

Got my tube changed

TW medical

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Hi everyone, 
So, today, we got our feeding tube changed. We had to go to Chicago to get this done. It only took like 20 minutes. We were high on dilodid. It was quite hilarious. We are on our way home now. 
Ray 

feeling sad

hi its emilee. im 11. im sad because of the body being in pain. i wish i could have a day without pain. my hips hurt. my tummy hurts to. maybe its because im anxious. i dont know. i just hate all this tubing. i feel like im in a hospital. Little Em, 5 is sad to. shes my alter. es a part of me. i guess lots of us have parts of our own. this is abbl so confusing. im overwhelmed. any advice?
Emilee 11

endocronology appointment

So, I went to the endocronologist, and even though my dexa scan showed severe osteoporosis, she said that she didn’t think it was true osteoporosis because I’m not a post-menapausal woman. She said they listed T-scores and not Z-scores. She basically said that she couldn’t help me because my case wasn’t a true endocronology case and that I should look for a genetic reason for it. She also said that it could be caused by my gastroparesis or just be a resulq that of my EDS. She isn’t willing to give me the meds for osteoporosis until I can get a definiative answer on whether this is osteoporosis. She is referring every to an endocronologist who specializes in bone health. She said the only lab that was off was my vitamin D. I’m just so confused….

Raych;

medical TW feeding tube formula issues and dissociation

TW medical and dissociation
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hi everyone,
we are struggling today. we are bloated because of our formula. we’ve been switching like crazy. Time loss and PTSAID is at an all-time-high. We are not dissociating when we are actually out as we started a new med called Neltrexone. It helps with chronic pain and staying more present when each of us is out. we have a chronic ear infection that we have aro be on eardrops for. Just stressed. Our dietitian isn’t listening to us either. She wants us to vent our G-tube three times a day. we don’t want to be on TPN…
Nicole 20

food on my mind ⠞⠙

Hi everyone, I’m really struggling today. I miss food so much today, but I’m dealing with bloating today because of my gastroparesis. I love food, but it doesn’t love me. I just hate this dicotomy… I just want to be normal.

Ray

Medical ⠠⠥⠏⠙⠁⠞⠑

Hi everyone,
So, I’m having trouble tolerating my formula again… Not sure what to do. I can’t add the water to my formula that I need, so I’m missing out on a liter of fluids that I would otherwise be getting. I’ve been struggling with my port to. I had to de-access it yesterday because of an alergic reaction to a dressing. I also found out that I’m alergic to the IV iron that I was getting. It was seems my body is reacting to everything right now. When I took off the dressing, I had hives on my skin. I’m just done with reactions!

more good news!!!!

Hi everyone,So, we skipped therapy today because of exhaustion. 
We are getting our supplies delivered tomorrow I think for the IV fluids. Yay!! So excited!!! Can’t wait. How is everyohe?
Ray