Having a J tube placed some time soon and I'm SO NERVOUS. Thank you thank you for making this video. All the articles online are so cold and clinical. This makes me feel like I'm talking to a very helpful friend and is so reassuring
this eased my mind a lot abt having a surgical tube placement, thank you sm. if you ever need a low effort video idea, more explanation on the recovery process and how it was for you personally would be so helpful!!
I just want to say thank you for your work on this subject. My girlfriend has gastroparesis and I thought if I had her teach me about it it would be better but it seamed to frustrate her. with your work and the work of other youtubers I have been able to learn enough that she can talk about it and I know what she is talking about without her having to explaining everything.
I have been watching you ever since I was diagnosed and you have been a big help!! Unfortunately, I go in on Monday for my 1st feeding tube so I watched that video again and just want to say thanks for sharing your story so I have an idea of what it will be like..without all the issues you suffered hopefully. You are looking so much healthier than you did at first and I am happy for you!! Love that color of sweater on you and your sewing room is sweet!! Thanks for all your help. Will continue watching and praying for you..
i can’t thank you enough for this. i’m going to see a specialist soon and my weight loss has been extremely severe, i’m unable to function daily. i’m puking, falling over in pain, it is unbearable, and i can hardly eat at all, so i’m fairly certain (or at least hopeful) that he’ll assign me a feeding tube. i hope that i get one and that it gives me relief- you’ve been an invaluable resource to me, thank you thank you thank you!!
also, have you ever tried/would you ever consider using medical marijuana for treating your nausea? i have a doctors appointment this week to receive my certification since my gp has been so incredibly detrimental to me, and i was curious your thoughts on it if you’d be willing to share :)
aww you are so welcome! I am so sorry you are experiencing such awful symptoms. GI issues are so rough on you physically and mentally. I hope that if you end up getting you a feeding tube that it will help your symptoms and give you some nutrition back. Also no I haven't and most likely won't try medical marijuana at this time for a couple reasons, but as with pretty much everything there could be a time where things change! The main one is I just personally don't feel comfortable using it but I have nothing against it and am so happy that it is able to provide relief for some people! Right now zofran works really well for my nausea so I tend to stick with that! Good luck with receiving your certification and I really really do hope it helps relieve some of your symptoms!
@@KennaKrueger thank you so much!! my doctor today said that she’d rather my specialist look into prescribing me a medical card, which i’m definitely in agreement with. in only 12 days, i’m finally going to be seen and evaluated by a professional i am so excited !! i found out today i lost 5 more pounds so that is Not good. thank you for your support, i hope you continue to heal and get some more relief
I just got my G/J tube put in 10/22 and I was not ready for the pain 😩 The surgery was done as an outpatient procedure. I hated that I wasn’t allowed to stay even one night too just make sure I was going to be ok. When I got home I was in so much pain and unable to breathe, I thought something was going wrong so I called the surgeon and he said that I should be on hydrocodon for a while. I’m about 3 weeks post op and I’m finally able to stand for more than 10 minutes without being in horrible pain.
I just had a J-tube placed. It is a harder surgery i spend 5 days in the hospital and I have a long recovery at home. I have to stay out if work for at least 2 weeks ans the doctor told me it will be 6 weeks before complete recovery. Worth it for me! Can't get G ou G-J and I need nutrition !
Aww no that sounds so rough but I have definitely heard that j tube surgeries are rougher. But you are right the recovery may be painful but it will definitely be worth it to get the proper nutrition!
Love this video!! Wish there was one like it before I got my tube a month and a half ago. My doctors told me I could use tubie pads right away with my PEG tube which was good cause the bumper kept digging into my skin even with the gauze.
Thank you so much!! I used tubie pads too soon after as well and it got irritated so I switched back to gauze until it was fully healed. More people definitely need to be aware of that because it can become pretty painful
@@KennaKrueger I do agree I had to use certain tubie pads the dorky little etsy store and sew and zo hurt the least for me. I couldn't do adorabelly ones until recently. But my doctors and home care nurse wanted me to use the etsy tubie pads over the gauze because they are thicker and protect my skin from the bumper better. Because I have EDS I have fragile skin and the bumper was cutting my skin even with the gauze. My skin is much happier with a tubie pad. But like you said everyone is different and just because this was best for me doesn't mean it's best for someone else.
@@emstarot1 I have Ehlers Danlos syndome, too - hypermobile type. Glad that you found some comfortable pads to accommodate the EDS skin issues! Do you have issues with adhesives and medical tape as well?
I've been majorly sick all day from my unknown gastro issues, and honestly watching your videos was needed, so I thank you for your good timing in releasing a new one!
Jejunostomies can sometimes be permanent and anatomy altering depending on the type of surgery for a jej they carry out. These need to be surgically removed in some cases if it’s no longer needed. Babies in UK have danglers, buttons just like adults here a mix of both. I have a G-J tube (AMT G-Jet Button) G for drainage & J for feeds, meds & fluids. I’m having major issues since 28/09 and tube isn’t in right place as the little motility I have is in reverse (reverse peristalsis) meaning last placement 28/09 is in duodenum so making me sick and I’m not doing well I’m only been tolerating anything at 10ml/hr so barely anything. The team fought 7 times to pull the jej part of the tube down to my jejunum and it kept going back to my stomach, I’m waiting for it to be re-tried and if these tries fail looks like a surgical jejunostomy is on the cards, and locally there’s NO IR dept or jej placement in endoscopy either only surgical so pretty on edge and scared at the moment... Ps. You can do dye test to check tubes are in right place, I’ve had awful issues with malabsorption until Peptamen, that part is much better, I’ve had an NJ (several) and a mix of G-J danglers & buttons. How are you doing on Peptamen? Any better than previous feed? ♥️🌈♥️🌈♥️xx
I didn’t know that fact about j tubes thank you for sharing! And that is so interesting how some babies in the uk have danglers because I don’t think I’ve ever seen a baby here have a dangler. I’ve heard that there are a lot of people who struggle with gj tubes migrating because of poor motility so I am so sorry you are experiencing that as well. A surgical jejunostomy is definitely scary but if that ends up being the route you have to go I hope it all works out for you and will help you tremendously! And I am doing so much better on peptamen and I’m so thankful for that! Thank you for asking! My energy is more consistent and I find I am less symptomatic from the formula than my last one.
Idk where my gastroparesis will lead me. I’m not doing the best rn so currently I’m getting a picc line bc my labs show dehydration and I’m having bad dizziness and sometimes I pass out. Not sure about nutrition yet. If you ever learn to make picc line covers I’ll buy from you
It can be scary to not know where Gastroparesis will take you but take things one step at a time and just focus on getting through each day. Looking into the future can be so so intimidating with a chronic illness. I am hoping the picc line will help with your symptoms and get you some nutrition and hydration!
Almost 2k! That is a wonderful reward for all of your hard work! This video was very helpful as I am getting a gj tube next month and am nervous about caring for it properly.
I know I can’t believe there are that many of you I’m so thankful! Good luck with your placement I hope it all goes well! Caring for it can definitely be intimidating at first but you’ll get a lot more comfortable with it as time goes on, you got this!
Thank you for this. i found it really helpful. In the UK we have the NHS, so get our stuff for free. I am really grateful for this, even tho I don't have a feeding tube yet. Do you know if it's possible to have a j-tube if you've had a gastric bypass?
You’re so welcome and I am so glad it was helpful! And i am not sure if you can or not but I believe a j tube if it is possible would be what they would place instead of a g or g/j but that is a question for your doctor!
I never had an issues with a clogged nasal tube. I had 4 ND tubes placed in 2 weeks and they all kept getting kinked. So I just had them take it out because I was better off without it because they didn’t help.
aww I am sorry you had to deal with that so many times, that can definitely be frustrating when they cause more issues when they are supposed to be helping
I have separate j tube i change at home it goes directly into jejunum it was a 8hrs surgery at 10 inch inscion but this was because of previous surgeries (9 on stomach) and digestive tract deformity and 2 week hospital stay it’s normally out patient. And my g tube was a 10hr surgery again 10 stomach surgeries this was a 12 inch inscion for the same reasons as above. 3 week inpatient normally outpatient I change both at home every 3 months and are buttons. I’ve pulled mine out with fully inflated balloon. When this happens I clean the button and stick it back in until I can change it. I’m 26F and these are my most recent tubes placed 2018 and 2020. I’ve been j tube dependent my whole life. Buried bumper syndrome is very painful the tube can’t turn and it needs to be changed immediately I’m in Canada so my supplies come from the government
Did you have issues with your GJ tube when you had it? Skin issues, bleeding, drainage? Especially after changes? It seems to take so long to heal, and bleeds super easy and hurts
@@Squeak1583 I’ve never had a GJ I have a Jtube and a Gtube my thoracic surgeon refuses to do GJ. However I have awful skin breakdown around my Gtube all the time I get burns from discharge I use diaper rash cream on it. I also get acid burns around my Jtube but not as much as I do with my Gtube. When I’m in antibiotics it’s 10x worse for discharge
Granulation tissue, SUCKS. Painful to say the minimum. To remove or get rid of, they cauterize it, with a chemical. I dont know whats worse granulation tissue itself and the pain it causes or the chemical cauterization of said tissue. With my first GJ that was a super common problem i had unfurnately, after about 2-3x of having it cauterized and it coming back i gave up and let it stay because at the end of the day, it was less painful and traumatizing than that procedure to have it removed, when sometimes ot didnt even work. It would turn the tissue gray and it would look NASTY. I also, had a lot of problems with leakage with my first GJ. I always wore tubie pads or gauze pads to absorb that leakage so it didnt cause skin breakdown. Ive had so many NJ tubes ive lost count, 1 surgical GJ placement, and many GJ tube changes for routine every 3 month changes plus changes for my dangler to my button and the few flips i had occur resulting in more changes. I had that GJ almost 2 years and after 1.5 years without it, i am scheduled for a new GJ placement. Found your video while hunting down what i need to know have and get to be prepared. I have medical ptsd and try to not remember the past medical traumas so idon't rememberr much of anything in regards to surgery recovery, any of it. So thank you for this video!
Having a J tube placed some time soon and I'm SO NERVOUS. Thank you thank you for making this video. All the articles online are so cold and clinical. This makes me feel like I'm talking to a very helpful friend and is so reassuring
this eased my mind a lot abt having a surgical tube placement, thank you sm. if you ever need a low effort video idea, more explanation on the recovery process and how it was for you personally would be so helpful!!
Aww yay I’m glad to hear that! Good luck with your placement whenever it may be!!
I just want to say thank you for your work on this subject. My girlfriend has gastroparesis and I thought if I had her teach me about it it would be better but it seamed to frustrate her. with your work and the work of other youtubers I have been able to learn enough that she can talk about it and I know what she is talking about without her having to explaining everything.
I have been watching you ever since I was diagnosed and you have been a big help!! Unfortunately, I go in on Monday for my 1st feeding tube so I watched that video again and just want to say thanks for sharing your story so I have an idea of what it will be like..without all the issues you suffered hopefully. You are looking so much healthier than you did at first and I am happy for you!! Love that color of sweater on you and your sewing room is sweet!! Thanks for all your help. Will continue watching and praying for you..
i hope you’re feeling better!!
i can’t thank you enough for this. i’m going to see a specialist soon and my weight loss has been extremely severe, i’m unable to function daily. i’m puking, falling over in pain, it is unbearable, and i can hardly eat at all, so i’m fairly certain (or at least hopeful) that he’ll assign me a feeding tube. i hope that i get one and that it gives me relief- you’ve been an invaluable resource to me, thank you thank you thank you!!
also, have you ever tried/would you ever consider using medical marijuana for treating your nausea? i have a doctors appointment this week to receive my certification since my gp has been so incredibly detrimental to me, and i was curious your thoughts on it if you’d be willing to share :)
aww you are so welcome! I am so sorry you are experiencing such awful symptoms. GI issues are so rough on you physically and mentally. I hope that if you end up getting you a feeding tube that it will help your symptoms and give you some nutrition back. Also no I haven't and most likely won't try medical marijuana at this time for a couple reasons, but as with pretty much everything there could be a time where things change! The main one is I just personally don't feel comfortable using it but I have nothing against it and am so happy that it is able to provide relief for some people! Right now zofran works really well for my nausea so I tend to stick with that! Good luck with receiving your certification and I really really do hope it helps relieve some of your symptoms!
@@KennaKrueger thank you so much!! my doctor today said that she’d rather my specialist look into prescribing me a medical card, which i’m definitely in agreement with. in only 12 days, i’m finally going to be seen and evaluated by a professional i am so excited !! i found out today i lost 5 more pounds so that is Not good. thank you for your support, i hope you continue to heal and get some more relief
I just got my G/J tube put in 10/22 and I was not ready for the pain 😩 The surgery was done as an outpatient procedure. I hated that I wasn’t allowed to stay even one night too just make sure I was going to be ok. When I got home I was in so much pain and unable to breathe, I thought something was going wrong so I called the surgeon and he said that I should be on hydrocodon for a while. I’m about 3 weeks post op and I’m finally able to stand for more than 10 minutes without being in horrible pain.
I just had a J-tube placed. It is a harder surgery i spend 5 days in the hospital and I have a long recovery at home. I have to stay out if work for at least 2 weeks ans the doctor told me it will be 6 weeks before complete recovery.
Worth it for me! Can't get G ou G-J and I need nutrition !
Aww no that sounds so rough but I have definitely heard that j tube surgeries are rougher. But you are right the recovery may be painful but it will definitely be worth it to get the proper nutrition!
So close to 2k Kenna! So proud of you!! Thank you for the information, I love how you format your videos! So excited for the winter launch!
Aww thank you so much! I know I can’t believe I have almost 2k subscribers that’s crazy!! Thank you thank you❤️
i love when you make these videos, they’re always so beautifully done! 💚
Aww that means a lot to me because making educational videos always makes me a little nervous but I am so happy to hear it was helpful!
Love this video!! Wish there was one like it before I got my tube a month and a half ago. My doctors told me I could use tubie pads right away with my PEG tube which was good cause the bumper kept digging into my skin even with the gauze.
Thank you so much!! I used tubie pads too soon after as well and it got irritated so I switched back to gauze until it was fully healed. More people definitely need to be aware of that because it can become pretty painful
@@KennaKrueger I do agree I had to use certain tubie pads the dorky little etsy store and sew and zo hurt the least for me. I couldn't do adorabelly ones until recently. But my doctors and home care nurse wanted me to use the etsy tubie pads over the gauze because they are thicker and protect my skin from the bumper better. Because I have EDS I have fragile skin and the bumper was cutting my skin even with the gauze. My skin is much happier with a tubie pad. But like you said everyone is different and just because this was best for me doesn't mean it's best for someone else.
@@emstarot1 I have Ehlers Danlos syndome, too - hypermobile type. Glad that you found some comfortable pads to accommodate the EDS skin issues! Do you have issues with adhesives and medical tape as well?
@@Dulcimerist I do. A lot of them make me red or pull off some of my skin. Fabric tape seems to work the best for me so far.
I've been majorly sick all day from my unknown gastro issues, and honestly watching your videos was needed, so I thank you for your good timing in releasing a new one!
Aww I am sorry to hear you are going through a rough time with your symptoms but you are the sweetest thank you!💕
Jejunostomies can sometimes be permanent and anatomy altering depending on the type of surgery for a jej they carry out. These need to be surgically removed in some cases if it’s no longer needed. Babies in UK have danglers, buttons just like adults here a mix of both. I have a G-J tube (AMT G-Jet Button) G for drainage & J for feeds, meds & fluids. I’m having major issues since 28/09 and tube isn’t in right place as the little motility I have is in reverse (reverse peristalsis) meaning last placement 28/09 is in duodenum so making me sick and I’m not doing well I’m only been tolerating anything at 10ml/hr so barely anything. The team fought 7 times to pull the jej part of the tube down to my jejunum and it kept going back to my stomach, I’m waiting for it to be re-tried and if these tries fail looks like a surgical jejunostomy is on the cards, and locally there’s NO IR dept or jej placement in endoscopy either only surgical so pretty on edge and scared at the moment... Ps. You can do dye test to check tubes are in right place, I’ve had awful issues with malabsorption until Peptamen, that part is much better, I’ve had an NJ (several) and a mix of G-J danglers & buttons. How are you doing on Peptamen? Any better than previous feed? ♥️🌈♥️🌈♥️xx
I didn’t know that fact about j tubes thank you for sharing! And that is so interesting how some babies in the uk have danglers because I don’t think I’ve ever seen a baby here have a dangler. I’ve heard that there are a lot of people who struggle with gj tubes migrating because of poor motility so I am so sorry you are experiencing that as well. A surgical jejunostomy is definitely scary but if that ends up being the route you have to go I hope it all works out for you and will help you tremendously! And I am doing so much better on peptamen and I’m so thankful for that! Thank you for asking! My energy is more consistent and I find I am less symptomatic from the formula than my last one.
this is going to help so many people 🥰 wish there was a video this detailed before i had my surgery!
Yay I’m so happy to hear that, thank you so much!
I'm getting a j-tube on Tuesday and am SUPER nervous.
When the gj tube flips it’s very painful I had that then they changed it to different ones for j and g tubes
Idk where my gastroparesis will lead me. I’m not doing the best rn so currently I’m getting a picc line bc my labs show dehydration and I’m having bad dizziness and sometimes I pass out. Not sure about nutrition yet. If you ever learn to make picc line covers I’ll buy from you
It can be scary to not know where Gastroparesis will take you but take things one step at a time and just focus on getting through each day. Looking into the future can be so so intimidating with a chronic illness. I am hoping the picc line will help with your symptoms and get you some nutrition and hydration!
Almost 2k! That is a wonderful reward for all of your hard work! This video was very helpful as I am getting a gj tube next month and am nervous about caring for it properly.
I know I can’t believe there are that many of you I’m so thankful! Good luck with your placement I hope it all goes well! Caring for it can definitely be intimidating at first but you’ll get a lot more comfortable with it as time goes on, you got this!
Thank you for this. i found it really helpful.
In the UK we have the NHS, so get our stuff for free. I am really grateful for this, even tho I don't have a feeding tube yet.
Do you know if it's possible to have a j-tube if you've had a gastric bypass?
You’re so welcome and I am so glad it was helpful! And i am not sure if you can or not but I believe a j tube if it is possible would be what they would place instead of a g or g/j but that is a question for your doctor!
Thank you for all the information Kenna! You explain so well!
Thank you so so much!
i get my J tube thursday i will try to come back and comment on how it is
how was it??
I never had an issues with a clogged nasal tube. I had 4 ND tubes placed in 2 weeks and they all kept getting kinked. So I just had them take it out because I was better off without it because they didn’t help.
aww I am sorry you had to deal with that so many times, that can definitely be frustrating when they cause more issues when they are supposed to be helping
I have separate j tube i change at home it goes directly into jejunum it was a 8hrs surgery at 10 inch inscion but this was because of previous surgeries (9 on stomach) and digestive tract deformity and 2 week hospital stay it’s normally out patient.
And my g tube was a 10hr surgery again 10 stomach surgeries this was a 12 inch inscion for the same reasons as above. 3 week inpatient normally outpatient
I change both at home every 3 months and are buttons. I’ve pulled mine out with fully inflated balloon. When this happens I clean the button and stick it back in until I can change it. I’m 26F and these are my most recent tubes placed 2018 and 2020. I’ve been j tube dependent my whole life.
Buried bumper syndrome is very painful the tube can’t turn and it needs to be changed immediately
I’m in Canada so my supplies come from the government
thank you for sharing your experience and knowledge!
Did you have issues with your GJ tube when you had it? Skin issues, bleeding, drainage? Especially after changes? It seems to take so long to heal, and bleeds super easy and hurts
@@Squeak1583 I’ve never had a GJ I have a Jtube and a Gtube my thoracic surgeon refuses to do GJ. However I have awful skin breakdown around my Gtube all the time I get burns from discharge I use diaper rash cream on it. I also get acid burns around my Jtube but not as much as I do with my Gtube. When I’m in antibiotics it’s 10x worse for discharge
Granulation tissue, SUCKS. Painful to say the minimum. To remove or get rid of, they cauterize it, with a chemical. I dont know whats worse granulation tissue itself and the pain it causes or the chemical cauterization of said tissue. With my first GJ that was a super common problem i had unfurnately, after about 2-3x of having it cauterized and it coming back i gave up and let it stay because at the end of the day, it was less painful and traumatizing than that procedure to have it removed, when sometimes ot didnt even work. It would turn the tissue gray and it would look NASTY.
I also, had a lot of problems with leakage with my first GJ. I always wore tubie pads or gauze pads to absorb that leakage so it didnt cause skin breakdown.
Ive had so many NJ tubes ive lost count, 1 surgical GJ placement, and many GJ tube changes for routine every 3 month changes plus changes for my dangler to my button and the few flips i had occur resulting in more changes.
I had that GJ almost 2 years and after 1.5 years without it, i am scheduled for a new GJ placement.
Found your video while hunting down what i need to know have and get to be prepared. I have medical ptsd and try to not remember the past medical traumas so idon't rememberr much of anything in regards to surgery recovery, any of it.
So thank you for this video!