I have had gastroparesis for over 6 years now and have had issues with my tubes off and on so much. My first tube lasted two months. It was damaged when my home health nurse was using scissors to change a dressing (mrsa infection from an extended hospital stay) which was located right around my tube site. Long story short she cut a hole in the tube. It was one piece and so the entire g/j tube had to be replaced. So this doesn't turn into a book, i've had dozens and dozens of replacements. I've had infections that have caused life threatening complications and required months and months of hospital stays. I got something called "buried bumper syndrome", which required surgery and months of PICC lines and antibiotics, not to mention a total relocation of my G/J stoma site. My gastroparesis had developed in to a permanent gastroparalysis. I was really healthy until my late 20's (I'm 44 now) when I was diagnosed with Ulcerative Colitis, then a handful of GI issues like Gerd and IBS...etc Now because of continuous malnutrition issues, and the fact that I'm completely NPO (haven't eaten actual food in 2.5 years, I'm also hypoglycemic and have to carry and emergency injection in case my sugar drops too low and I can't get it to go up with "D-50 (injectable dextrose gel that goes into my j-tube). But I can honestly say I know exactly what your going thru...keep your head up and keep going forward. It's impacted my life greatly...but I won't let it destroy it! Much love and God Bless.
Mickey thank u so much for sharing with us. I did go watch the actual change/procedure video too. Because of youtubers like you and Mary Frey, I became less nervous about my grandson and his feeding tube. He is battling cancer and I was so nervous when he was about to get his tube. But your videos were so helpful. Thank u!!!
when I was about 8 I had surgery on my eye. My aunt gave me a teddy bear so I could snuggle with it during and after my surgery. When I woke up from my surgery, my teddy bear had an eye patch on just like mine. It made me so happy and I never forgot about it. I love that you have terry
Mickey I am SO glad yo posted this and the actual video. I am getting a GJ Tube on Wednesday via interventional radiology (my first one) and I am SO nervous. This made me feel a lot better
Thanks for sharing this! I have GP (diagnosed in September of 2017) but I thankfully don’t need a tube...yet. Erythromycin is still working well for me. Anyway, I do have a cecostomy (goes into bowel for enemas due to neurogenic bowel as a result of Spina Bifida) and the chait tube I have gets changed the exact same way as your feeding tube but I’ve never actually seen the procedure because I have to be totally put to sleep due to severe pain and anxiety. It was cool to actually get a sense of what it looks like when they change mine.
I have been watching all of your videos this last week. I have shared them with my 7 year old Grand daughter and we are both so inspired by your strength. You are one courageous young Woman. Everyone could learn a thing or two from you. I am amazed how positive you are and all that you overcome on a daily basis. Thank you for sharing your journey with all of us. God bless you angel.
Thanks so much for making all of these videos! I was just diagnosed with gastroparesis about...2 weeks ago? And looking at a GJ tube kind of suddenly. Also have spinal cord injury/multiple issues including neurogenic bowel/bladder. Doc is sending me for more testing and considering an ostomy, plus for good measure I get chronic pancreatitis. I’m 33 and have friends with tubie kids, and I worked in pharmacy and am familiar with TPN, but my focus was always on neuro, not GI. So I have basically no idea what I’m getting into. Enjoying getting some idea from patients who has been there!
I am in the same boat with you! I just had a J/G tube put in because of the same thing, Gastroparesis. And an reaction to anesthesia for a toe amputation, Which made my gastroparesis worse! I am also a type 2 diabetic. I still have my tube, It has been 6 months. When I found out that I had to get one... I was disturbed, upset and horrified and wanted to run out of the hospital. But once I got it ... I had to just LEARN to cope and live with it. I had to realize that if I had NOT gotten the tube, I would have DIED from starving and lack of nutrition! I can't eat regular food anymore. But my doctors are trying To help get my stomach back to working again including ordering prescription from out of Canada that isn't available in the U.S. So... In a way, Having that tube is saving my life! And I SURE hope you are doing ok! Be strong! ☺
I was allowed to extend my feeds too when I had a J tube but now because I just have a G tube I can’t. Now my procedure is to switch to IV D5, which I get D5NS at home anyway.
This actually shows how much of the tube goes into your stomach that's crazy!!😩 so glad that you have that over with now and that it didn't hurt too bad!💜
I have a stuffed animal stitch from disneyland and he's the same as teddy. He has everything i have had. He has an IV, oxygen tubing and NG tube which will soon be replaced by a tripel lumen feeding tube (which i have now) and he'll also get a G and J tube pretty soon. It helps me remember what I've been through and how strong i am
I am 14 years old and have type two diabetes and liver issues and I have had 6 or 7 Surgery’s because of all my illnesses and I always love to see vids like these to see and learn about other illnesses I have. Eden hospitalized more than I can remember bc my blood sugar is also out of control except my numbers are always high so I get the point of you trying to stabilize them thank you for doing what you do and I want you to know if has helped me out a lot to learn about this and understand that no matter how bad I’m feeling there is always someone out there that feels worse
I have been with a G/J tube for six months now. Due to gastroparesis. Hopefully it won't be permanent! I hope that my stomach will start functioning again sometime soon!
Wolf4 Life she has a chronic condition called gastroparesis, which means her stomach is partially paralyzed. it makes eating for her super difficult, so relying on a feeding tube most of the time is her only choice:
Just posting this here as I also posted it on the other video. Mickey you are so bloody friggin 'pure dead brilliant' ⬅bit of Glesga slang there for you. Lol To go through your 'first awake' tube change whilst vlogging/FB live you have to be pretty damn brave in the first place as 1. You had no idea whether it would have been excruciatingly painful 2. Just putting yourself out there especially with something so intimate is a brave choice on its own but for you to do it in order for us other **tubies** to show what it's like, what to expect and so forth. Makes you one #badasswarrier. You should be incredibly proud of yourself. Much love Gilly IG(@just_gil83) ☆♡☆ Stars and Hearts all round xxx Oh p.s is nitrious oxide the same as entinox? Or is my brain fuddled as it's 3am here x
I have had gastroparesis for over 6 years now and have had issues with my tubes off and on so much. My first tube lasted two months. It was damaged when my home health nurse was using scissors to change a dressing (mrsa infection from an extended hospital stay) which was located right around my tube site. Long story short she cut a hole in the tube. It was one piece and so the entire g/j tube had to be replaced. So this doesn't turn into a book, i've had dozens and dozens of replacements. I've had infections that have caused life threatening complications and required months and months of hospital stays. I got something called "buried bumper syndrome", which required surgery and months of PICC lines and antibiotics, not to mention a total relocation of my G/J stoma site. My gastroparesis had developed in to a permanent gastroparalysis. I was really healthy until my late 20's (I'm 44 now) when I was diagnosed with Ulcerative Colitis, then a handful of GI issues like Gerd and IBS...etc Now because of continuous malnutrition issues, and the fact that I'm completely NPO (haven't eaten actual food in 2.5 years, I'm also hypoglycemic and have to carry and emergency injection in case my sugar drops too low and I can't get it to go up with "D-50 (injectable dextrose gel that goes into my j-tube). But I can honestly say I know exactly what your going thru...keep your head up and keep going forward. It's impacted my life greatly...but I won't let it destroy it! Much love and God Bless.
Mickey thank u so much for sharing with us. I did go watch the actual change/procedure video too. Because of youtubers like you and Mary Frey, I became less nervous about my grandson and his feeding tube. He is battling cancer and I was so nervous when he was about to get his tube. But your videos were so helpful. Thank u!!!
when I was about 8 I had surgery on my eye. My aunt gave me a teddy bear so I could snuggle with it during and after my surgery. When I woke up from my surgery, my teddy bear had an eye patch on just like mine. It made me so happy and I never forgot about it. I love that you have terry
Mickey I am SO glad yo posted this and the actual video. I am getting a GJ Tube on Wednesday via interventional radiology (my first one) and I am SO nervous. This made me feel a lot better
I love how positive u are through everything that is throw at u! U are always smiling and I love it!
Thanks for sharing this! I have GP (diagnosed in September of 2017) but I thankfully don’t need a tube...yet. Erythromycin is still working well for me. Anyway, I do have a cecostomy (goes into bowel for enemas due to neurogenic bowel as a result of Spina Bifida) and the chait tube I have gets changed the exact same way as your feeding tube but I’ve never actually seen the procedure because I have to be totally put to sleep due to severe pain and anxiety. It was cool to actually get a sense of what it looks like when they change mine.
I have been watching all of your videos this last week. I have shared them with my 7 year old Grand daughter and we are both so inspired by your strength. You are one courageous young Woman. Everyone could learn a thing or two from you. I am amazed how positive you are and all that you overcome on a daily basis. Thank you for sharing your journey with all of us. God bless you angel.
Thanks so much for making all of these videos! I was just diagnosed with gastroparesis about...2 weeks ago? And looking at a GJ tube kind of suddenly. Also have spinal cord injury/multiple issues including neurogenic bowel/bladder. Doc is sending me for more testing and considering an ostomy, plus for good measure I get chronic pancreatitis. I’m 33 and have friends with tubie kids, and I worked in pharmacy and am familiar with TPN, but my focus was always on neuro, not GI. So I have basically no idea what I’m getting into. Enjoying getting some idea from patients who has been there!
I am in the same boat with you! I just had a J/G tube put in because of the same thing, Gastroparesis. And an reaction to anesthesia for a toe amputation, Which made my gastroparesis worse! I am also a type 2 diabetic. I still have my tube, It has been 6 months. When I found out that I had to get one... I was disturbed, upset and horrified and wanted to run out of the hospital. But once I got it ... I had to just LEARN to cope and live with it. I had to realize that if I had NOT gotten the tube, I would have DIED from starving and lack of nutrition! I can't eat regular food anymore. But my doctors are trying To help get my stomach back to working again including ordering prescription from out of Canada that isn't available in the U.S. So... In a way, Having that tube is saving my life! And I SURE hope you are doing ok! Be strong! ☺
Your bear is such a cool idea, I can see it being awesome for children.
I was allowed to extend my feeds too when I had a J tube but now because I just have a G tube I can’t. Now my procedure is to switch to IV D5, which I get D5NS at home anyway.
This actually shows how much of the tube goes into your stomach that's crazy!!😩 so glad that you have that over with now and that it didn't hurt too bad!💜
I have a stuffed animal stitch from disneyland and he's the same as teddy. He has everything i have had. He has an IV, oxygen tubing and NG tube which will soon be replaced by a tripel lumen feeding tube (which i have now) and he'll also get a G and J tube pretty soon. It helps me remember what I've been through and how strong i am
That Teddy might be the cutest thing I’ve ever seen
Terry really does look like the worlds sickest teddy ever seen. He was very well behaved having the tube inserted 😂😂🐻🐻
Terry is the cutest! Such a good idea. I love your videos 😘
Poor Terry he went through that GJ procedure without even nitrious oxide and then after all that the poor bear had to keep his nose noodle in 🐻♡♡♡
I am 14 years old and have type two diabetes and liver issues and I have had 6 or 7 Surgery’s because of all my illnesses and I always love to see vids like these to see and learn about other illnesses I have. Eden hospitalized more than I can remember bc my blood sugar is also out of control except my numbers are always high so I get the point of you trying to stabilize them thank you for doing what you do and I want you to know if has helped me out a lot to learn about this and understand that no matter how bad I’m feeling there is always someone out there that feels worse
Terry is so cute I’m like yup I have an issue. Lol I sat there like awwwe Terrry lol cute
Could you do a video all about Terry like what order he got everything and how you put them all in??
Terry still has a smile on his face 😊
I have been with a G/J tube for six months now. Due to gastroparesis. Hopefully it won't be permanent! I hope that my stomach will start functioning again sometime soon!
Liked, subscribed, and commented! Wishing you a smooth & speedy recovery :)
Praying for you!
Good job, Mikey! and I love your shirt 😍
How cute that you gave Terri a feeding tube🤣
AH! i would totally do that to my bear! >v< Wish I could...but I never kept my stuff....Maybe I'll find a shirt for her....
i went to a thrif store the other day and i found a bear with a pic line and i thought of ur bear
This is kinda helping me because I’m having surgery in 5 days and I might have to have a tube GJ or one that goes in ur nose
Is that a Kimberly Clark Trans Gastric Jejunal tube?
So brave! 😳😳😳
I've had a feeding tube button. I still have the hole where it used to be
Good job n love your bear! ❤✌
Love you mickey. Your amazing.x
You are awesome. I love your channel. I wach you all the time
She has such pretty eyes!
I’ve been waiting for more videos !!!!😭😭
I really like your channel. I have neurofibromas and hope to start a channel in summer. Do you have any tips?
Who was giving you a hard time about it breaking?
Kind of partial to teddy bears , been called that my whole life . Poor bear
whyncant you eat regular food?
She has gastroparesis.
Wolf4 Life she has a chronic condition called gastroparesis, which means her stomach is partially paralyzed. it makes eating for her super difficult, so relying on a feeding tube most of the time is her only choice:
😊❤
The X-ray looks like there's a tree in your stomach.
There no sound.
No really , tube soup does sound pretty nasty . You're a pisser kid keep up all the chipper charm , glad to see your glow !!!
Just posting this here as I also posted it on the other video.
Mickey you are so bloody friggin 'pure dead brilliant' ⬅bit of Glesga slang there for you. Lol To go through your 'first awake' tube change whilst vlogging/FB live you have to be pretty damn brave in the first place as 1. You had no idea whether it would have been excruciatingly painful 2. Just putting yourself out there especially with something so intimate is a brave choice on its own but for you to do it in order for us other **tubies** to show what it's like, what to expect and so forth. Makes you one #badasswarrier. You should be incredibly proud of yourself.
Much love Gilly
IG(@just_gil83)
☆♡☆ Stars and Hearts all round xxx
Oh p.s is nitrious oxide the same as entinox? Or is my brain fuddled as it's 3am here x
❤️🦓
Do you have a facebook page?
Your pretty
Ok, so I just watched the two videos in the wrong order, now I know why you are having it replaced!
Jaquie passed away
You are too funny, you have to make your teddy bear look just like you. I love that. I feel bad for you I couldn’t imagine how you feel