I take medicine for the side effects so I'm on migraine and nausea medication but nothing that regulates my heart rate. I also take salt supplements to try to increase my blood volume and loooots of fluids (but u probably already know that haha)
So you do not get leaks, as someone else said..you can go on Etsy and purchase covers for the tube bag connection. I have a couple bc waking up soaked in formula is definitely a thing and yeah, ew. Lol. Also tip: get an extender. Since your Y port pops open so easily. An extender will help keep it blocked. You made a good point about gaining confidence with having an NG/NJ. Because people can see it, it does get awkward. I always say, right now (Covid seasons) is a blessing bc the mask covers most of it up. Lol. Thinking about it in terms of this is keeping me alive, is a really great way to look at it btw. Also I love when you keep saying “feeding the bed” lmao. I’m definitely stealing that term
I know peiple ask because they are curious and look. I have a disability and I've mostly comfortable with questions and explaining. Have you thought about being outspoken like in public school. So that it something kids are more aware of and that way someone who is comfortable or adjusting the kids will have their back. Or even going to a special needs to let them know it's not part of disability it's a part of someone's life sometimes. Thank you for your video it was quite interesting to see
Hey, I can relate. I was on a walk using my backpack. I jumped up trying to touch the basketball rim (couldn't do it) and the top of my formula back popped open and formula was leaking everywhere. EEwww! ICK! Had to walk all the way home with formula all over me. Gross.
I'm so glad you're doing better and finally have some energy to do what you enjoy. On my new meds I'm getting some energy back too, slowly. I have a pair of socks I was knitting before I got ill that I can finally think about working on again without feeling anxious, so that's great, and I'm having fun cooking to accommodate my new diet. I wish you the best 💓 Also I followed you on Insta if you ever want to have a chat abt chronic illness stuff, I'm @preshelledpistachio
Hi 🥺 I just got my tube inserted and it’s so difficult to adjust. I hate the pressure feeling in my chest. And now I’m scared of feeding the bed and everything the comes along with it
don’t worry i promise it will get easier and less scary! the pressure feeling goes away once your body adjusts, and yes feeding the bed does kinda suck but it’s not the worst and it’s best if you can just laugh at yourself get cleaned up and go back to sleep. i hope everything goes well
@@kalexis6484 hi! It’s been a rocky year, I ended up getting the feeding tube removed around halloween last year but I had to get a couple tubes reinserted which later came up and dislodged in the er and had to be removed hours later. I’m still suffering with health woes related to my stomach. I can’t gain weight and I don’t have a good relationship with food, with the fear of getting sick. Plus, it’s been tough since I had to switch doctors from pediatric care to adult so it’s been difficult finding a good gi practice in co. But I haven’t been to the hospital since July 2021 for throwing up and I’m hoping it stays that way. Appreciate the care☺️
I just got officially diagnosed with Gastroparesis. Right now I'm on Reglan. I'm trying to get use to this medication. Its just so agitating right now. Its like it rushes everything through my system. I made a mistake and tried to eat without taking it today....big mistake....
@@unicorndanigaming1912 yes it was extremely painful going in and past the nose, going down your throat it barley hurts but the nose bit i had to have people hold me down for. i now have it in for 6 week so praying i don’t have to get it replaced🤞
@@unicorndanigaming1912 i’m not going to lie to you it hurt me a lot, it might be different for you but it really isn’t comfortable. i hope you get better though, best of luck
They can shower, swim, run around. There’s a clamp on the tube that doesn’t allow foreign objects in. It also can be tied back into the hair. Nothing happens when they sneeze-maybe because it goes into the abdomen/ stomach/ lower intestine.
Im 14 and ive had a feedong tube since I was about 8. You are such an inspiration to me! Thank you so much!
Thank you for sharing your life with me. You make me feel comfortable.
I'm here before you get famous😉I have pots and my mom had cancer last year so I kinda understand some things you're going through❤️
Oh my gosh having pots is one of the worst.do you have medications for it? I’m on fludracotisone but it’s not doing anything x
I take medicine for the side effects so I'm on migraine and nausea medication but nothing that regulates my heart rate. I also take salt supplements to try to increase my blood volume and loooots of fluids (but u probably already know that haha)
So you do not get leaks, as someone else said..you can go on Etsy and purchase covers for the tube bag connection. I have a couple bc waking up soaked in formula is definitely a thing and yeah, ew. Lol. Also tip: get an extender. Since your Y port pops open so easily. An extender will help keep it blocked.
You made a good point about gaining confidence with having an NG/NJ. Because people can see it, it does get awkward. I always say, right now (Covid seasons) is a blessing bc the mask covers most of it up. Lol. Thinking about it in terms of this is keeping me alive, is a really great way to look at it btw.
Also I love when you keep saying “feeding the bed” lmao. I’m definitely stealing that term
I know peiple ask because they are curious and look. I have a disability and I've mostly comfortable with questions and explaining. Have you thought about being outspoken like in public school. So that it something kids are more aware of and that way someone who is comfortable or adjusting the kids will have their back. Or even going to a special needs to let them know it's not part of disability it's a part of someone's life sometimes. Thank you for your video it was quite interesting to see
Hey, I can relate. I was on a walk using my backpack. I jumped up trying to touch the basketball rim (couldn't do it) and the top of my formula back popped open and formula was leaking everywhere. EEwww! ICK! Had to walk all the way home with formula all over me. Gross.
I'm so glad you're doing better and finally have some energy to do what you enjoy. On my new meds I'm getting some energy back too, slowly. I have a pair of socks I was knitting before I got ill that I can finally think about working on again without feeling anxious, so that's great, and I'm having fun cooking to accommodate my new diet. I wish you the best 💓 Also I followed you on Insta if you ever want to have a chat abt chronic illness stuff, I'm @preshelledpistachio
Grace Law i’m glad you’re starting to do better as well! 💛
Just started watching the video but now I kind of feel lucky that I have twist cap connections on my feeding tube because mine is also a NJ tube
Hi 🥺 I just got my tube inserted and it’s so difficult to adjust. I hate the pressure feeling in my chest. And now I’m scared of feeding the bed and everything the comes along with it
don’t worry i promise it will get easier and less scary! the pressure feeling goes away once your body adjusts, and yes feeding the bed does kinda suck but it’s not the worst and it’s best if you can just laugh at yourself get cleaned up and go back to sleep. i hope everything goes well
lauren boh thank you for making me feel better; it’s been a difficult little journey and this is only the start. Thank you again tho truly 🥺
How has it been???
@@kalexis6484 hi! It’s been a rocky year, I ended up getting the feeding tube removed around halloween last year but I had to get a couple tubes reinserted which later came up and dislodged in the er and had to be removed hours later. I’m still suffering with health woes related to my stomach. I can’t gain weight and I don’t have a good relationship with food, with the fear of getting sick. Plus, it’s been tough since I had to switch doctors from pediatric care to adult so it’s been difficult finding a good gi practice in co. But I haven’t been to the hospital since July 2021 for throwing up and I’m hoping it stays that way. Appreciate the care☺️
I just got officially diagnosed with Gastroparesis. Right now I'm on Reglan. I'm trying to get use to this medication. Its just so agitating right now. Its like it rushes everything through my system. I made a mistake and tried to eat without taking it today....big mistake....
@tortilla mia it actually helped my motility
@tortilla mia no I dont. I actually don't have nausea or vomiting. I got a second opinion, they think I have a motility disorder.
How have your symptoms been!???
thank you. I have to get one soon and i'm scared
i’m getting one put in tomorrow, how bad is having it put in? i’m so nervous
Did you get it put in? Does it hurt?
@@unicorndanigaming1912 yes it was extremely painful going in and past the nose, going down your throat it barley hurts but the nose bit i had to have people hold me down for. i now have it in for 6 week so praying i don’t have to get it replaced🤞
@@darcyoop9372 I have an eating disorder so my mom says I might have to get a feeding tube
@@darcyoop9372 how is it now???
@@unicorndanigaming1912 i’m not going to lie to you it hurt me a lot, it might be different for you but it really isn’t comfortable. i hope you get better though, best of luck
Why don’t you tape the end of your connections together just at night when you sleep so it doesn’t come out and take the tape off during the day?
Gabriella Hafner that’s a really good idea! i’d never thought to do that, thank you!
Are you still on the tube
You are amazing
i have some questions for the tubed people ig. what happens when u sneeze? do u eveb shower with it? and what happens when u get a nose bleed?
They can shower, swim, run around. There’s a clamp on the tube that doesn’t allow foreign objects in. It also can be tied back into the hair. Nothing happens when they sneeze-maybe because it goes into the abdomen/ stomach/ lower intestine.
i woke up with feed all over me and THE SMELL it was all matted in my hair, it was AWFUL
Yay, I'm the 660 Sub
You are beautiful ❤❤