Good question! I wear a mask for two reasons. The first one being my immune system. Due to steroids my immune system is suppressed so my hospital has me on immune system precautions. aka wear a mask when in the ER, I can't wait in ER waiting rooms, Staff also should wear a mask when in my room, I'm not allowed to be on floors with sick people on them so my hematologist has me on the hematology/oncology floor where its clean, at home if people are sick around me I can't be there, like if a family member is sick they either stay at my grandparents house or are quarantined to their bedrooms, no one who is sick can be by me so often I have to cancel plans because someone has the sniffles, during flu season I don't go places much and when I do I wear a mask and don't touch anything, etc. The second reason is Mast Cell Activation Syndrome or MCAS. This is an allergy disorder. I get allergic reactions from smells, chemicals, perfumes, etc and can go into anaphylactic shock in a moments notice. Gotta keep those epic pens and Benadryl on ya at all times! Anyway, I know that this was a long response but I really wanted to answer your question!! Thanks for joining the family! #StripesSquad
Even when you have just woken up from surgery, you are stunningly beautiful I like to re-watch your videos when I am finding life tough, even when the specific video doesn't necessarily relate, your strength and realness gives me strength
You have such a wonderful, warm, sweet personality; I suspect that really helps you through so much of what you go through. You reaction to that blanket really showed off your personality. Glad this trip was so short for you, and that they got your tube in working order so quickly. Great job explaining it with the photos. Hope all your appoinments went awesome!
You did a fantastic job of explaining what happened. Way better and more informative than lots of medical information sites. As always I hope you are doing well and good luck with your endocrinology appointment. I've been on a wait list for an endocrinologist for two plus years and I still don't have an appointment date. Best of luck and wishes of less pain!
My daughter had a G tube like that before she got her button. She was 20 days old and so small we would secure it to her by wrapping an Ace bandage around her. She had the button the first 20 months of her life. Take care care of yourself.
Hi! My name is Hope❤️ I love your new intro!! I wanted to thank you for making me see the importance of positivity. You are a shining sun☀️ I’m sending lots of love
I had a similar thing happen to me at the beginning of the month. I was getting a Gtube placed for the first time and the next day I was in way too much pain. My dad drove me to the ER early in the morning. I was there all day. They told me my feeding tube was no longer in my stomach. So I went in for surgery right away to close the opening, place a new Gtube (a different kind) and put in a drainage tube to get rid of everything that had leaked out of my stomach. I was admitted to the hospital for about 5 days. I'm still recovering. Luckily my gastroparesis hasn't been acting up so my body can just focus on healing right now.
Glad you are feeling better :) I found your channel because I also have gastroparesis and I have had it for like 10 years but I just got diagnosed back in August. So it is so good to finally finally know what it is! Because for so long I would get so bloated and constipated after I ate anything and more recently within the last six months it has caused me to have a lot of problems with reflux and trouble swallowing and nausea. I don’t have a feeding tube. I am trying to manage my gastroparesis with medications and with diet changes. Soup has become my best friend lol! So happy to have found your channel because I don’t know any other young people who can relate to me. I have an appointment with a new GI doctor this week so I totally get what you mean about all of the appointments :( Hope you had a happy new year so far! :)
Oh my gosh im jealous of the blanket. I love polar bears and urs has polar bears. im glad everything went well, especially the fact that you got released early.
Yes I do understand I have a G tube due to my strokes hard time swallowing have to go back on the 26 to change it out still have a lot of granulation around my stoma and then it burns still have some problems aspirating Hope u feel better
Hopefully you are mending and resting . And also that your appt. went well and you didn't need to reschedule. I always dread needing to reschedule specialist appointments because it seems to always be that the next available is either the next day at an inopportune time or 3 months later. I have health issues that make leaving home a daunting task sometimes, although I've spent plenty of time in the ER and in the hospital. I live about an hour from the Twin Cities myself and go to Mayo for healthcare, so appointments are a headache to schedule sometimes lol.
I'm so glad that it was a quick trip and they were able to figure out what was wrong quickly! But when you had the button, they didn't tell you to periodically deflate the balloon to make sure it wasn't losing water? To prevent that from happening??
Thank you for sharing your feeding tube experiences with us. My grandson, who is 5, recently received a g tube. We haven't switched to a button, but I am wondering if we should. Lol His tube is the little one like you have now. I know it has a balloon so this can still happen, but I appreciate you sharing your experiences with it. I think you did a great job explaining.
Why could they not give you a shot that night for your pain instead of a pill that they knew wouldn’t take effect? Can you eat any foods or drink by mouth? Your so young to have to go thru so Much I know this was awhile back but so much to go thru take care my sweet one Love ❤️ Shey
I have a gtube not a j but usually whenever meds come out of it we just need to change it and I've had a endoscopy before and they couldn't in ANY way put me to sleep because I'm MH (basically just no gas further than laughing gas) and so all my sleep time meds are through a IV and I seriously hope you've never expected this but 9 different people tried sticking me but couldn't get a vein so I had a sedative through my nose and another through my arm but I was awake and aware and felt EVERYTHING I describe the endoscopy as me being a pig with a apple in its mouth aka the biter that was too big (I have a small narrow mouth) being gutted I pray you don't experience that
hey hun i have a question. so i havent been officially diagnosed with POTS but my cardiologist said its either that or Inappropriate Sinus Tachycardia. my question is: how often do you use your wheelchair and when are the times you use it? i always use mine at school and when im going grocery shopping or something like that. i just cant shake this guilty feeling however when i do use it. maybe its because its an invisible illness or because i havent been diagnosed but i would like to know if i'm using it as often as some other POTS patients. Love you and your videos!!
My new home is at hospital so if I have any of medical problems and then I will asked my doctor or nurses to come in my hospital room when my parents died in the future.
I’m thirteen and got diagnosed with Crohn’s disease three years ago I had an endoscopy and colonoscopy and then decided to have a ng tube, and then had it again last summer and now my doctors advised a button and I am really worried, the surgery is booked in my half term and I literally was told about the button option yesterday and now all of a sudden it’s happening. I was crying all night because I’m only thirteen I worry about my looks and I already have body positivity issues. I just want to know any advice you would say to me or just anything that could help me feel better.
The pictures helped me visualize it! Question - if you can just have a tube there without any kind of button - what are the advantages of a button, or why do people often have one?
I have had both types. I personally like the Mickey button better just because of the smaller size of it, and the fact that you don’t have a tube that hangs down from it, as you would with the GTube. But I really haven’t had many problems with either one. Just prefer the Mickey.
I’ve had a endoscopy to and at least for me it wasn’t scary. For me they just put on a mask that made me fall asleep and I wake up with a IV in my arm but they take it off quickly. Hope this helped but remember I think it’s different for everyone
“When you hear the sound of hooves, think horses, not zebras.” This phrase is taught to medical students throughout their training. In medicine, the term “zebra” is used in reference to a rare disease or condition. ... Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras.
OnlyTheTrue Actually all of my nurses know I vlog I only put the camera away because most of them don't like to be on camera so I do it for their privacy. I vlog in the hallways and out in the open all the time, I make no point of hiding it. And occasionally nurses are okay with me vlogging with them in the room like in the ER the nurse and I had a whole conversation about TH-cam.
I just came across your channel and I love it already!! One question.. how come you wear a mask?
Good question! I wear a mask for two reasons. The first one being my immune system. Due to steroids my immune system is suppressed so my hospital has me on immune system precautions. aka wear a mask when in the ER, I can't wait in ER waiting rooms, Staff also should wear a mask when in my room, I'm not allowed to be on floors with sick people on them so my hematologist has me on the hematology/oncology floor where its clean, at home if people are sick around me I can't be there, like if a family member is sick they either stay at my grandparents house or are quarantined to their bedrooms, no one who is sick can be by me so often I have to cancel plans because someone has the sniffles, during flu season I don't go places much and when I do I wear a mask and don't touch anything, etc. The second reason is Mast Cell Activation Syndrome or MCAS. This is an allergy disorder. I get allergic reactions from smells, chemicals, perfumes, etc and can go into anaphylactic shock in a moments notice. Gotta keep those epic pens and Benadryl on ya at all times! Anyway, I know that this was a long response but I really wanted to answer your question!! Thanks for joining the family! #StripesSquad
Life with Stripes ohhh ok thank you for actually answering my question in full not a short answer haha a lot of ppl don’t! ♥️♥️
@@LifewithStripes 0:18
youtube.com/@LifewithStripes
Even when you have just woken up from surgery, you are stunningly beautiful
I like to re-watch your videos when I am finding life tough, even when the specific video doesn't necessarily relate, your strength and realness gives me strength
You have such a wonderful, warm, sweet personality; I suspect that really helps you through so much of what you go through. You reaction to that blanket really showed off your personality.
Glad this trip was so short for you, and that they got your tube in working order so quickly. Great job explaining it with the photos. Hope all your appoinments went awesome!
You did a fantastic job of explaining what happened. Way better and more informative than lots of medical information sites. As always I hope you are doing well and good luck with your endocrinology appointment. I've been on a wait list for an endocrinologist for two plus years and I still don't have an appointment date. Best of luck and wishes of less pain!
With hospitals there is never any rest.... Rest happens at home. Hope your getting excellent care 🤗🤗🤗
My daughter had a G tube like that before she got her button. She was 20 days old and so small we would secure it to her by wrapping an Ace bandage around her. She had the button the first 20 months of her life. Take care care of yourself.
Hi! My name is Hope❤️ I love your new intro!! I wanted to thank you for making me see the importance of positivity. You are a shining sun☀️ I’m sending lots of love
I have no feeding tube and i understood perfectly. I think you did wonderful explaining!!!
You are an inspiration. I am very impressed. You give hope to many.
If you watch chronically Jackie she had the same problem now she has 2 stomas one g tube and one j tube. Hugs xxx
Just want to say I love you videos and your music makes me so happy!
Glad you got this sorted out and that you’re starting to feel better!
Do you feel any pain?
Sorry you go through such rubbish, hope you're back on track now, Also you have the most incredible eyes!
I had a similar thing happen to me at the beginning of the month. I was getting a Gtube placed for the first time and the next day I was in way too much pain. My dad drove me to the ER early in the morning. I was there all day. They told me my feeding tube was no longer in my stomach. So I went in for surgery right away to close the opening, place a new Gtube (a different kind) and put in a drainage tube to get rid of everything that had leaked out of my stomach. I was admitted to the hospital for about 5 days. I'm still recovering. Luckily my gastroparesis hasn't been acting up so my body can just focus on healing right now.
It is great they got you figured out. Home is awesome. Keep going. You are an amazing young lady!
You’re doing great and I hope this tube is the one that finally works out!
That sounds scary and painful, glad they could figure out what was going on.
Glad you are feeling better :) I found your channel because I also have gastroparesis and I have had it for like 10 years but I just got diagnosed back in August. So it is so good to finally finally know what it is! Because for so long I would get so bloated and constipated after I ate anything and more recently within the last six months it has caused me to have a lot of problems with reflux and trouble swallowing and nausea. I don’t have a feeding tube. I am trying to manage my gastroparesis with medications and with diet changes. Soup has become my best friend lol! So happy to have found your channel because I don’t know any other young people who can relate to me. I have an appointment with a new GI doctor this week so I totally get what you mean about all of the appointments :( Hope you had a happy new year so far! :)
You're amazing, keep fighting!
Oh my gosh im jealous of the blanket. I love polar bears and urs has polar bears. im glad everything went well, especially the fact that you got released early.
Yes I do understand I have a G tube due to my strokes hard time swallowing have to go back on the 26 to change it out still have a lot of granulation around my stoma and then it burns still have some problems aspirating
Hope u feel better
Great to hear you are feeling better now! Also, thank you for the explanation - I did learn a thing or two :)
Hopefully you are mending and resting . And also that your appt. went well and you didn't need to reschedule. I always dread needing to reschedule specialist appointments because it seems to always be that the next available is either the next day at an inopportune time or 3 months later. I have health issues that make leaving home a daunting task sometimes, although I've spent plenty of time in the ER and in the hospital. I live about an hour from the Twin Cities myself and go to Mayo for healthcare, so appointments are a headache to schedule sometimes lol.
Sorry you had to go through that. I hope you are doing better now.
I'm so glad that it was a quick trip and they were able to figure out what was wrong quickly! But when you had the button, they didn't tell you to periodically deflate the balloon to make sure it wasn't losing water? To prevent that from happening??
Glad they figured out what was causing the pain.
i havea feeding tube
Thank you for sharing your feeding tube experiences with us. My grandson, who is 5, recently received a g tube. We haven't switched to a button, but I am wondering if we should. Lol His tube is the little one like you have now. I know it has a balloon so this can still happen, but I appreciate you sharing your experiences with it. I think you did a great job explaining.
Your explanation was very good! Glad they figured out the issue and I hope you're feeling better! Was the tube infected too as you suspected?
I understand about feeding tubes I like the one you got Stay safe stay healthy
Why could they not give you a shot that night for your pain instead of a pill that they knew wouldn’t take effect? Can you eat any foods or drink by mouth? Your so young to have to go thru so Much I know this was awhile back but so much to go thru take care my sweet one
Love ❤️ Shey
I have a gtube not a j but usually whenever meds come out of it we just need to change it and I've had a endoscopy before and they couldn't in ANY way put me to sleep because I'm MH (basically just no gas further than laughing gas) and so all my sleep time meds are through a IV and I seriously hope you've never expected this but 9 different people tried sticking me but couldn't get a vein so I had a sedative through my nose and another through my arm but I was awake and aware and felt EVERYTHING I describe the endoscopy as me being a pig with a apple in its mouth aka the biter that was too big (I have a small narrow mouth) being gutted I pray you don't experience that
You are such an inspiration to me
You’re so pretty!!!!
Hooray for no popsicle stick!
(I've been following you for a while, but I made a new account. Previously I was commenting as Cindy Hayes. 💖)
I do not have a feeding tube and I followed your explanation you did just fine 😊
Glad you are feeling better.
Glad your feeling better ill pray for you. I understand what you where saying
so proud of you.
I've heard other "tubies" call that style of tube a "dangler".
I am wondering why they didn't place a bigger balloon with the mic-key button? Was that not an option?
omg did you cut your hair!! i love it!
hey hun i have a question. so i havent been officially diagnosed with POTS but my cardiologist said its either that or Inappropriate Sinus Tachycardia. my question is: how often do you use your wheelchair and when are the times you use it? i always use mine at school and when im going grocery shopping or something like that. i just cant shake this guilty feeling however when i do use it. maybe its because its an invisible illness or because i havent been diagnosed but i would like to know if i'm using it as often as some other POTS patients. Love you and your videos!!
Can you vlog about your endocrinologist appointment?
My new home is at hospital so if I have any of medical problems and then I will asked my doctor or nurses to come in my hospital room when my parents died in the future.
I don't have a feeding tube and you explained it perfect!
I’m thirteen and got diagnosed with Crohn’s disease three years ago I had an endoscopy and colonoscopy and then decided to have a ng tube, and then had it again last summer and now my doctors advised a button and I am really worried, the surgery is booked in my half term and I literally was told about the button option yesterday and now all of a sudden it’s happening. I was crying all night because I’m only thirteen I worry about my looks and I already have body positivity issues. I just want to know any advice you would say to me or just anything that could help me feel better.
EmilyX Taylor How did it go?
The pictures helped me visualize it! Question - if you can just have a tube there without any kind of button - what are the advantages of a button, or why do people often have one?
Lucky42 a lot of people like buttons because they’re much smaller. Some people with long tubes (danglers) find them to be kinda heavy
I have had both types. I personally like the Mickey button better just because of the smaller size of it, and the fact that you don’t have a tube that hangs down from it, as you would with the GTube. But I really haven’t had many problems with either one. Just prefer the Mickey.
I’ve had a endoscopy to and at least for me it wasn’t scary. For me they just put on a mask that made me fall asleep and I wake up with a IV in my arm but they take it off quickly. Hope this helped but remember I think it’s different for everyone
Hope this helped someone
I have had 5 endoscopy and I can confirm
I have dental Surgery on Tu. at 7:30AM I need to be there by 5:30AM no food or drinks after 12:00AM
Oh... Your nails are beautiful.
You can do it!!!
A couple videos ago you were talking about how you were going to quit TH-cam are you not going to do it ?
Just came acroee u chanel I also have a G tube. And gastroforises
can you explain what life with stripes means? why the zebra?? Thanks
But why zebra's - can you explain. What does a zebra have to do with it. Thanks!
“When you hear the sound of hooves, think horses, not zebras.” This phrase is taught to medical students throughout their training. In medicine, the term “zebra” is used in reference to a rare disease or condition. ... Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras.
❤️💙 Strong Beautiful 💙❤️
😀😀😀😀😀😀😀😀
Belive.
I have gastroperis to sorry four spelling it wrong
When you get. Feeling tube
Hey
will you not be able to vent now
Why do you hide the camera when nurses come in? I get that you need to talk to them, but it seems like you're hiding that you're doing it.
OnlyTheTrue Actually all of my nurses know I vlog I only put the camera away because most of them don't like to be on camera so I do it for their privacy. I vlog in the hallways and out in the open all the time, I make no point of hiding it. And occasionally nurses are okay with me vlogging with them in the room like in the ER the nurse and I had a whole conversation about TH-cam.
makes more sense xx
You're so cute
Your eyes very very very beautifull
0 thumbs down!!!!
btw im Genevieve jason is my step dad
How well you have a baby
What exactly is all wrong with you?
In the name of Jesus christ. Be healed. Jesus is our savier. That mean he is our savier from all our situaltion.
Jesus is real. Get closer to him.he can help you.