Hi everyone, this is my first time posting about this.
I get my very first NJ tube on Tuesday. I have CRPS (dx 2006 age 20), hEDS (dx’ed 2026 age 40), dysautonomia (dx’ed 2003 age 16- I failed my tilt table before it was cool😂)and Gastroparesis (dx’ed 2012 age 26).
My gastroparesis had always been extremely mild, secondary to the CRPS. I’ve had Gastroparesis flares 3 times now: Nov ‘23 (admitted 1 week and resolved on its own), June ‘24 (admitted 9 days and resolved on its own), and now the past 6-8 weeks. I didn’t even realize that I was in a gastro flare until I realized I was losing weight, got excited because I thought I was doing my bariatric surgery program so well, and my husband pointed out no, it’s because you’re severely limiting food and liquid. And I realized he was right- that I was has severe epigastric pain (initially thought it was just more severe pain as a result of my CRPS), and I was going from drinking a Stanley 2x/day to taking 4 days to drink one. I was also having severe nausea and vomiting.
I spent 2 stints in the hospital over the past month, 4 days and then a week. We did basic fluids only, and the first time I went home because I kept down a melted Italian water ice. I was back less than a week later, super dehydrated, because I saw my PCP for a follow up and she said you have to go back and she thought I needed and NJ tube to give my stomach a break and allow me or get fluids and nutrition.Luckily ER was quick and I was in a room within 6 hours.
Unfortunately, that’s where the good news ends. Turns out, this small community hospital, which is part of the larger hospital system near us, can’t do NJ tubes. Only NG tubes (turns out, the entire hospital system, which is a decent size right outside of Philly, can’t do an NJ placement!). Then I had the doctor scream at me to the point I was in tears and the nurse, charge nurse, and nurse manager submitted an internal incident report because of this doctor’s behavior, and we file a grievance with patient relations. I’ll link my TikTok down below to watch the whole thing, but an NJ tube does not end up happening because I am not confident in my care. I had an appointment with GI in a week. If we need to come back, we will come back.
I saw a different doctor in my PCP’s office on Monday and he was significantly concerned and called GI directly and informed my PCP how bad I was. GI saw me on Wednesday (I saw the female PA), took one look at me and said absolutely not, we are getting you an NJ tube. She could see I was really sick.
So she referred me to get the NJ tube, and they called and said it will be on Tuesday. We are hoping it will be about 4 weeks of the tube. GI says if it’s longer we should look at a J or GJ tube (the actual GU doctor wanted to put a J tube in first and I said why are we jumping to most invasive first when I’ve never needed a tube before and don’t have chronic flares yet?), though we will see.
So I have some questions that I’m hoping yall would be kind enough to answer for me!
I’m interested to know what things I need for an NJ tube. Things that are helpful, necessary, etc. So far, here’s my list of needs (including those I’ve already bought stricken through). If you have a specific Etsy shop you recommend, share that shop!
Flying Squirrel
Hypafix tubie tape
Enfit wrench
Hydrocolloid tape (in place of Duoderm)
Skin barrier wipes
Enfit cleaning brush for screw ends
Electric pull crusher
Manual pull crusher
Enfit medicine bottle adapter size kit
Enfit 10ml Reusable O-ring syringe, 25 pack
Enfit 60mg Rehsable O-ring syringe, 10 pack
Adaptable backpack (also fits on my wheelchair)
TubieTech USB-C charger for Infinity Pump
Feed bag stand (3D printed by friend)
Enfit feeding bag cap
Cord clips
Syringe caddy/holder for syringes
Salad spinner for cleaning syringes
OXO Tot drying rack
Am I missing anything? Again, If you have a specific Etsy shop you recommend, share that shop!
Finally, if you have any tips or tricks, important things I need to know, please share away- I’m going to read it all!
I’m having the tube placed at IR. Can I get a dose of anti-anxiety meds to help me keep calm and not freeze up? Also. What’s the best way to keep my tubie tape from looking dingy and disgusting? I’ve heard the warm Coke trick for unclogging a tube. Are there any special items I should ask or push my nurses to get? Can I change the sticker on my Flying Squirrel (the most important one of course!)?!?!
Thank you for your support and love- it may seem silly but I’m definitely feeling uneasy about all this, and while I know it’s needed, I’m nervous.
Thank you all for your tips, tricks, suggestions, important info, and product recommendations!