I just wanted to let you know that I am in nursing school and your videos from setting up feeds to cleaning wounds to how you do your flushes all help me through school to learn!! Thank you so much and I wish you the best health ❤️❤️
It’s so incredible to me how involved and dedicated you are to your health. I work in healthcare and I’ve seen, mostly in the older generation, almost complete disinterest in doing even the most simple tasks to maintain their health whether it be medications or cleanliness related to their medications. Even for me it’s hard sometimes to take my health so seriously! But seeing your most recent TPN videos and how diligent you are from when you wake up till when you sleep is inspiring!
Amy: this video is excellent. Clear, step-by-step instructions that demystifies a process which must be somewhat scary to a new patient. But more than that, your composure and good humor with this routine makes this excellent instruction. You’ve managed to combine chronic illnesses glamour-go girl!
Dear Amy, following you and watching your videos for the past few weeks really helps me out. Tomorrow I'm getting my first tube. Your videos made me confident that everything is gonna be alright. I would like to wear my tube with as much flair as you do. Thankyou for your videos, they really make a difference.
Originally I was searching for the technique of inserting NG tube (coz I am studying medical field things) ..... but then it linked me to some videos from this channel! Amy I want to tell you that, you are such an inspirational person. It’s really not easy to live with this disease & condition..... it could be frustrating sometimes. I want you to know that, you are very brave to show this side of you. Not everyone have the courage, but I really appreciate the knowledge coming from your videos. It make us understand patients better. Lot of love.
I just wanted to say thank you for all or your videos. I am in the process for getting all of my tests done to get my final diagnoses of my GI problems and I have been dealing with it for many years. But I have been my mother's care giver for the last 10 years and she also has Gastrocicss along with esophagitis so she has been tube feed for many many years now and I wish I could of had these videos at the beginning to watch to help learn what other people did and how they mixed and stored there food and all there meds. I just can't thank you enough for your videos. I have actually been binge watching both your channels for the last week. I really hope that if and when I get my feeding tube even if it is temporary I hope I am as confident as you are.. I wish you the best with everything and thank you...
Love this video so interesting to learn about your feed and how you set it up ....your an amazingly strong person and you should proud of yourself for everything you do ..xx
YASSSS ANOTHER VIDEO!!!..honestly get soooooo excited when you upload a video....I have been so sick lately and I have been binge watching your videos all day for the past week.
How long have you lived with the symptoms How bad is your gastroparesis How did you live without eating for however long you did I mean you probably won’t read or answer this but I’m still curous
Jacqui Cat I’ve had signs and symptoms since I was a baby. I’m considered mild but I have a 20% delay. Not all people who have gastroparesis cannot eat. I have only had a two year period where I couldn’t eat and there were other underlying factors. The guilt trip is unnecessary and only serves to make the reader feel bad if they come back to read it and I, quite frankly, almost didn’t answer you out of spite. I am not obligated to answer you as you are asking incredibly invasive questions to a stranger on the internet. I am answering because I’m assuming you’re asking because you need help. For future reference.
I only stumbled onto your channel! I find this ironic as my mum had gastropereisis. My mum had two tubes, in her stomach as the nasal didn't work for her. She had a G and a J tube (I never learnt what that meant) she used all sorts of pumps but eventually settled on to the free to go pump because she was able to go out more with that. She bought a bag actually made to hold the pumps and feed bottles. Was very interesting to see someone else with this illness as I don't know many people that have it.
G means gastostomy and J means Jejunostomy. It's just a hole through the skin, fascia, and other tissues into the gastric antrum (G) or the Jejunum (J). Hope that helps!
Very interesting videos. As a fellow tubie my thoughts are is quite a cumbersome set up. You can get dual port giving set add ons from Nutricia. Then you can run both feed and water at the same time and only need a single pump and a single giving set. You can use the Flocare Infinity pump which is far smaller, easier, lighter and more portable and you only have to worry about 1 small pump. Far less hassle and easy to carry round.
☀️ Ｓｕｎｎｙ Ｄａｙｓ ☀️ i can’t use nutricia they don’t supply to my area or hospital I can only use kangaroo and I’ve actually switched to a joey pump now which is alittle smaller but I just use the two bags and one giving set like in the video xx
Amy Lee Fisher oh that’s a bummer about the postcode lottery thing! So typical of NHS. I can relate to that with other equipment. Love your positive spirt. All the best. 😊👍
Hi Amy! Can you tell me what you using to make the electrolyte water? Im using regular water now but i have POTS to, so the electrolyte sounds great. Thanks for sharing this video!
Amy i love your videos! 2 youtube accounts? Ahhhhh im new to this channel..been watching the other one everyday. So here goes some binge watching lol yeehaw!
I have a question regarding the formula. When your having a icky day and vomitt alot... Do those formulas cut down on the acid in your stomach? Also, does it give a horrible after taste? I have g.i issues (going on 20 years) but basicially ignored it and lived with my nasty symptoms. Now 28.. Its really taking a toll on me. I need to look into the one you use... Although i have no issue with gaining weight... The complete opposite. Anyway, i love these educational videos!!!! 🌻
putting it together is like a dialysis machine, that's neat. oh and you may have answered this question already but can you drink anything by mouth, and can you eat anything solid? or do you always have to use the feeding tube?
PLEASE MAKE MORE VIDEOS LIKE THIS! =) TMI - how do your stool samples differ from before these supplemental feeds? Did each different brand create different stool samples and cause diarrhoea or constipation? I know you shouldn't be able to taste it through a feeding tube but have you dipped your finger in to try a taste? Are there different flavours? You also didnt start your feed straight away, would it not coagulate while its hung on the IV pole and block the tube? P.S. What is in them that make them so calorific? Lots of love x
The reason she has the tube is gastroparesis, meaning her stomach is paralysed, so after a while she will most likely throw up the food because her stomach can't empty it. That's why she needs the tube because her body can't pass things through her stomach to be properly digested. This is a bit late, sorry, but maybe it helped Idk.
I watch all your videos but have been extremely ill last 2 months no need to explain to you I'm sure. I wanted to thank you! With ALL of my heart THANK YOU! you're putting your whole life and medical struggles online for everyone to see and I know there's alot of nasty rude comments at time and some days I wabt to answer back to the extremely rude people BUT I'm one that bieves if I start saying things back at them it all shows I'm just as wrong as the are and that sometimes the best and smartest thing to do is keep quite and move on. Anyway an again I want to thank you for everything you talk about the good, bad, and just plain nasty.i myself have MANY illnesses one of witch is killing me and I have been connected to one tube and another and so on. The one thing I have never had was a permanent tube unfortunately my body my intestines, liver and my one and only kidney I was born with is not doing well either so now after many longs painful surgeries and so on I have come to the point that it is 100% needed. Up until now I have been so scared of what it will be like, how people see me? Will I remember how to do it all? Watching you and listening to your bravery and soft spoken loving voice makes things feel a little less scary. So thank you for sharing your thoughts, fears, scary moments, sharing results you get back and share with us. You share your relationship with Tom, and your friends and other family. You ARE an AMAZING,STRONG & LOVING & BEAUTIFUL young lady. You are ALWAYS in my thoughts and prayers. God Bless you Beautiful!! love you with all my heart you're like a long distance cousin and I think about you daily. Sending TONS of love from Texas! 😘 ❤
why is it that flushes are painful for you? and why are they less painful through the pump? it’s the same sterile water regardless of how it’s given right?
Bumpy Back Roads when you flush thru the pump it does it slower so it's not as much fluid all at once. That's why she said she was going to do not kinda slow. When the pump does it, it is over a pair of time not in just a few seconds or minute. I hope that makes sense. Cause since hers does not go into her stomach it goes in to her intestine it is a smaller area to push the flush into. Your stomach or a larger space the your intestine. That was how it was explained to me by my GI doctor..
Sophie Moore her tube goes straight to her small intestine so she still goes to the bathroom. Her issues are mainly with her stomach so this keeps her digestive system working but won't irritate her stomach and keep it down. Hope this helps
So I think I already know the answer to my own question but I'm going to ask anyway can you eat any solid foods or have any fluids or is it all by the feeding tube ???
Holly Ross I have gastroparesis and I know everyone has it differently but this is what my experience of it is so I hope this is helpful. For gastroparesis patients, some don’t ever need tubes cause they can tolerate food enough not to need a tube but for me and other patients you may need to be tube fed, however that doesn’t mean you can’t eat or drink. I am told by my doctors and dietician to try and eat solids, not much but eat a little bit a day, however it does always end in me being sick several hours later. I can also drink but that ends up in me being sick aswell. My gastroparesis is worse when I don’t eat because my body becomes used to being tube fed and then can’t tolerate food at all. But in the short, yes, gastroparesis patients can eat but obviously most of it comes back up because it can’t be digested properly, hope that was helpful
This may be a stupid question but when you have a feeding tube do you feel hungry? Like does your stomach growl and send the sign to your brain that you need the tube formula?
@@haylyespin9134 it depends on why you have a feeding tube, like in Amy's case I would guess that she will feel hungry but because of her condition she cannot physically eat, where as someone like me I have no energy or appititte when I'm on tube feed so I am on it for nutrition as I don't have the energy or appititte for food And it's not a stupid question 💕
@@gxb3600 thank you! 💕 I've always been curious as to how a feeding tube through a nose works. My little cousin has one in his stomach and that was the only feeding tube I knew about for a long time. He could still eat certain foods and told us when he was hungry. Random curiosity lol
Looking for a solution to HOLD/HANG the feeding tube. Care taker of the old unconscious bedridden patient is his spouse itself. 2 Hourly Feed frequency is taking a toll on her. Especially as any extra help is not possible due to corona situation. So any guidance for a Feeding Syringe Holder is greatly appreciated. TYVM
I understand that eating solid food is difficult for you bit ive noticed that you really like food, have you ever tried just chewing and spitting it out? When my friend had his feeding tube put in this is what he did 0-0
I have a question, so say it was the morning and you finish all your feed, can u take the tube out until you need your feed again or do u have to keep the tube in? Or can u just choose to keep it in? ilysm ❤️
girly Dani I can’t take it out because it’s in my intestines so if I was to remove it I would have to go back to the hospital each time to get it placed and my most recent tube placements were that hard that I had to be put under general anaesthetic for it 😬 but I wish I could take it out when I wasn’t feeding that would be so amaizng!! 🙏🏼🙏🏼
Also with any kind of nasal tube, removing and placing tube is really irritating. The more you mess with it, the more your nasal passages can swell and make it more painful and difficult to re-place the tube. Even with an ng a lot of people chose to leave them in
I don’t have a tube but I eat baby food because it digests way better for me I have Gastroparesis too also I’m taking a medicine and it’s helping a little bit I think when I turn 18 a new gi doctor will help me more
Where abouts in Australia do you live? I'm a home dialysis patient and it's so nice to see another strong independent woman taking care of her chronic illness ❤ hope your doing well :)
As annoying as all that may seem it becomes extremely obvious how much it helps me (I can’t maintain my weight on my own so I’m always underweight) when I can’t get any due to a change in insurance. (I’m american) my insurance says I can only get the system if I need it. So the only option I have is to wait until I’m dangerously thin and become hospitalized. and my doctor says I will die if I don’t get it. And even then it’s only a 50/50 chance I’ll get it.
Very interesting and informative video. I have a question for you (Sorry if you already answered it I’m French so I may not have heard you answer it hehe) Are you able to feel hunger and do you feel full after your feed? Also I would like to know what does flushing your tube means and why it hurts?
Katherine Levrioux I somtimes get hungry but not really and the feed doesn’t really make me feel “full” it just kind of makes me feel bloated and uncomfortable and flushes are painful because it’s a lot of fluid in a small space so it’s painful and the reason the tube has to be flushed is to stop it from clogging. Hope that made sense 🙏🏼🙏🏼🙏🏼
6“Whoever visits a sick person is plunging into mercy until he sits down, and when he sits down he is submerged in it.” (Silsilah Al-Saheehah)And the Prophet also said:“Whoever visits a sick person or visits a brother in Islam, a caller cries out to him: ‘May you be happy, may your walking be blessed, and may you occupy a dignified position in Paradise.’”6Happiness and optimism are Islamic virtues when they spring from trust and hope in God.Likewise sadness and pessimism are sinful when they reflect a state of despair in the Almighty.Therefore, regardless of how bad or “incurable” the illness, the one visiting the sick should encourage him with hope in God, Who has power over all things, including the chronically, even terminally ill.“Is not He (God) able to give life to the dead?!” (Quran 75:40)“...And in God should the believers put their trust.” (Quran 3:122)Besides trying to help the sick forget their pain, suffering, discomfort and hardship -even if only for a short while -the visit should also serve to boost their morale, lift their spirit and strengthen their resolve.Abdullah b. Abbas, the cousin and Companion of the Prophet, related that when visiting a sick person, God’s Messenger would say:“Be steadfast, may God purify you.” (Saheeh Al-Bukhari)What’s more, the visitor should use the occasion of his visit to remind himself and the one being visited of their total and utter dependence upon God; that it is better to suffer in this life than the Next, and that He, Most High, will reward the believer who is patient and firm when put to in trial.6Al-Tirmidhi. 7“...And (righteous are those) who remain patient in times of poverty, sickness and during conflict....” (Quran 2:177)Tactful speech is advisable during the best of times.The one visiting the sick ought to be especially sensitive and carefulwith his words when in the presence of the suffering.After all, exacerbating the patient’s distress might lead to a worsening of their physical condition.And just because a person may be incapacitated due to their sickness, it does not mean that they forfeit their right to be obeyed in their own house, nor that their privacy go un-respected.The scholar of Islam, Imam Ibn Abdul-Barr, wrote in his book of Islamic jurisprudence, Al-Kafi:“Whether you visit a healthy or an ill person, you ought to sit where you are told.Hosts know better how to ensure privacy in their home.Visiting an ill person is a confirmed Sunnah.The best visit is the shortest.The visitor ought not to sit too long with an ill person, unless they are close friends and the ill person enjoys their company.”As for the length of the visit, if the visitor is sincere in his intention, once he has achieved the objective of his visit, he would have no reason to burden the sick person with a prolonged stay and unnecessary disturbance.The Syrian scholar, Shaykh Abdul-Fatah Abu Ghuddah, wrote in his book on Islamic manners:“The length of the visit should not be longer than the time between the two sermons of Friday. In this respect, it was said that the visit should be long enough to convey salaams and wishes, to ask the sick how they are doing, to pray for their recovery and to leave immediately after bidding them farewell.”The point being that the visitor must show compassion at every moment and opportunity: compassion through the appropriateness of his words, compassion through the correctness of his conduct, and compassion through the brevity of his stay; all in the sure 8knowledge that doing so would lend him towards God’s Compassion, as His Beloved Prophet said:“Show mercy to those on earth, the One above the heavens will show mercy upon you.”And from the most compassionate of actions is to emulate the Sunnah(inspired practice) of the Prophet Muhammad in visiting the sick.That is because to say and do as he did is the surest way to bring about success in both this life and the Next, for both the visitor and the one being visited.From the many Prophetic narrations that have reached us in this regard is the narration of A’isha, the wife of the Prophet, where she said:“If someone fell sick, the Prophet would pass his right hand over them while saying the following prayer: ‘O Lord of humanity!, take away the suffering, bring the recovery, there is n
Emily Canty she has a feeding tube because she has gastroparesis (I have gastroparesis also so I hope I’m helpful) where your stomach is paralysed and can’t digest food properly so when you eat by mouth, a few hours hours later, you will end up throwing up the food you ate so the feeding tube is a way of getting all your nutrients without being able to eat. Hope that was helpful
2Islam invites to all that is good and warns from all that is bad.From those good and virtuous deeds is the visiting of the ill and afflicted.When people visit each other in good health, bonds of brotherhood and friendship are strengthened.How then when people visit each other in times of sickness and poor or failing health? Illustrating the empathy that Muslims are required to feel for each other, Prophet Muhammad, may the mercy and blessings of God be upon him, said:“The parable of the Believers in their mutual love and mercy is like that of a living body: if one part feels pain, the whole body suffers in sleeplessness and fever.”1Visiting the sick is from the clearest signs of such mutual love, mercy and empathy.More than that, visiting the sick is a major responsibility that every single Muslim is duty-bound to fulfill.The Prophet Muhammad said: 1Saheeh Muslim 3“The rights of one Muslim over another Muslim are six... When you meet him, you greet him with the salaam(i.e. to say: “As-Salamu alaykum”), when he invites you, you accept his invitation, when he consults you in a matter,you give him sincere advice, when he sneezes and praises God, you ask God to have mercy on him, when he is sick, you visit him, and when he passes away you accompany him (through his funeral).”2In this Prophetic narration) we find that the Muslim is encouraged with concern for his brother in Islam during the three phases of his worldly existence: his health, sickness and his death.Whilst in good health, the Muslim is obliged to greet his brother in faith with the greetings of peace and protection, to accept his invitations and to give him sincere advice.Then, when the Muslim is suffering from a cold, an allergy or whatever else is causing him to sneeze, his brother in Islam is obliged to ask God to have mercy on him. Likewise, when the Muslim’s sickness is such that he is incapacitated, his brother in Islam is obliged to visit him.Finally, when the Muslim passes away from this life, his brother in faith is obliged to accompany his funeral procession, prayer and burial.The great reward awaiting those who visit the sick was spelt out by the Prophet when he explained:“A Muslim visiting his sick brother will continue to be in the harvest of paradise until he or she returns home.”3And God’s Messenger of Mercy, Muhammad, also said:2Related by Abu Hurayrain Saheeh Bukhari.3Saheeh Muslim. 4“A visitor walking to visit a sick person will be wading in the mercy of God.When the visitor sits with the sick one, they will be immersed in mercy until his or her return.”4God Himself explained the importance of and greatness of the reward of visiting the sick. The Prophet said:“On the Day of Resurrection, God the Mighty and Majestic will say: ‘O child of Adam! I became sick and you did not visit me!’ The person will say, ‘O Lord, how can I visit you and you are the Lord of all that Exists!’ God will say, ‘Did you not know that my slave ‘so and so’ became sick, and you did not visit him? Did you not know that if you visited him, you would have found me with him?’” (Saheeh Muslim)As with every other virtuous deed and noble duty, Prophet Muhammad led by example.He would both make time to personally visit the sick and also enquire after them through others.Whilst in Mecca, for example, a pagan woman was given to throw filth and garbage upon the Prophet whenever he passed her house. One day, the noticeable absence of the Prophet’s abuser concerned him so much that he enquired after her.When he learnt of her sickness, he visited her.She was so taken aback by his merciful concern and that she embraced Islam.“Repel (the evil of your foe) with what is better: then lo! the one between whom and you was enmity (will become to you) as if he were a dear friend.” (Quran 41:34)The learned Companion, Anas b. Malik, also related the following episode from the life of God’s Final Prophet to humanity:“A Jewish boy who would serve the Prophet fell sick, so the Prophet said: ‘Let us go and visit him.’ They (the Prophet and his illustrious Companions) went to visit him and found his father 4Imam Ahmad and Ibn Hibban. 5sitting by his head. The Messenger of God said: ‘Proclaim that there is no true deity worthy of being worshipped except God alone, and I will intercede on your behalf on account of it on the Day of Resurrection.’The boy looked at his father and the father said:‘Obey Abul-Qasim (Muhammad)!’ So the boy uttered: ‘There is no true deity worthy of being worshipped except God alone, and Muhammad is the last Messenger.’ The Messenger of God then said: ‘All praise is due to God Who saved him from the Fire of Hell.’”5From these two examples from life of the Prophet, we find that it is not a precondition that the sick being visited are from within the fold of Islam.Nevertheless, from these two examples, we find that the act of visiting the sick and suffering, as exemplified by the Prophet Muhammad, can be such a touching and moving experience that it might even cure that most fateful of diseases: infidelity.“Indeed in the Messenger of God you have an excellent example to follow for whoever hopes for [the meeting of] God and the Last Day and remembers God much.” (Quran 33:21)The rewards for visiting the sick are great in both number and magnitude.The Prophet Muhammad said:“If a man calls on his sick Muslim brother, it is as if he walks reaping the fruits of Paradise until he sits, and when he sits he is showered in mercy, and if this was in the morning, seventy thousand angels pray for him until the evening, and if this was in the evening, seventy thousand angels pray for him until the morning.” (Al-Tirmidhi)And he, Heavenly Salutations be upon him, also said:5Ibn Hibban.
Julian Walker because her stomach doesn’t work like a normal stomach - reason for the tube, and the feed actually goes into her intestines so it can be absorbed and all the nutrients she needs, into her blood.
I know this might strech far but have you ever thought about trying CBD oils? It helps tremendously with pain, and other issues it helps with my epilepsy and nausea, so it might help you out❤
Hi lovely I know you are busy and poorly and can't always answer everyone. I have sent a DM on Instagram to you. There is a personal thing I would like to ask u with something I have massage trubble with but I dont want to put it publicly. I was just wondering if it is something you struggle with at. I hope you may get chance to take a look at my message lovely. If you can't I do understand. Love your videos. I have been leaning so much from you. Hope you are do as best you can today sweetie. Xxxx
I just wanted to let you know that I am in nursing school and your videos from setting up feeds to cleaning wounds to how you do your flushes all help me through school to learn!! Thank you so much and I wish you the best health ❤️❤️
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It’s so incredible to me how involved and dedicated you are to your health. I work in healthcare and I’ve seen, mostly in the older generation, almost complete disinterest in doing even the most simple tasks to maintain their health whether it be medications or cleanliness related to their medications. Even for me it’s hard sometimes to take my health so seriously! But seeing your most recent TPN videos and how diligent you are from when you wake up till when you sleep is inspiring!
Amy: this video is excellent. Clear, step-by-step instructions that demystifies a process which must be somewhat scary to a new patient. But more than that, your composure and good humor with this routine makes this excellent instruction. You’ve managed to combine chronic illnesses glamour-go girl!
Amy passed away 😢💔
What happened to her
Dear Amy, following you and watching your videos for the past few weeks really helps me out. Tomorrow I'm getting my first tube. Your videos made me confident that everything is gonna be alright. I would like to wear my tube with as much flair as you do. Thankyou for your videos, they really make a difference.
ruclips.net/video/nE6mYknR9GI/видео.html
I enjoy the feeding tube videos bc to me they're interesting
ruclips.net/video/nE6mYknR9GI/видео.html
Originally I was searching for the technique of inserting NG tube (coz I am studying medical field things) ..... but then it linked me to some videos from this channel! Amy I want to tell you that, you are such an inspirational person. It’s really not easy to live with this disease & condition..... it could be frustrating sometimes. I want you to know that, you are very brave to show this side of you. Not everyone have the courage, but I really appreciate the knowledge coming from your videos. It make us understand patients better. Lot of love.
I just wanted to say thank you for all or your videos. I am in the process for getting all of my tests done to get my final diagnoses of my GI problems and I have been dealing with it for many years. But I have been my mother's care giver for the last 10 years and she also has Gastrocicss along with esophagitis so she has been tube feed for many many years now and I wish I could of had these videos at the beginning to watch to help learn what other people did and how they mixed and stored there food and all there meds. I just can't thank you enough for your videos. I have actually been binge watching both your channels for the last week. I really hope that if and when I get my feeding tube even if it is temporary I hope I am as confident as you are.. I wish you the best with everything and thank you...
Love this video so interesting to learn about your feed and how you set it up ....your an amazingly strong person and you should proud of yourself for everything you do ..xx
YASSSS ANOTHER VIDEO!!!..honestly get soooooo excited when you upload a video....I have been so sick lately and I have been binge watching your videos all day for the past week.
ruclips.net/video/nE6mYknR9GI/видео.html
thank you for being so straight forward with this! I finally reached out to get my gastroparesis diagnosed!
How long have you lived with the symptoms
How bad is your gastroparesis
How did you live without eating for however long you did
I mean you probably won’t read or answer this but I’m still curous
Jacqui Cat I’ve had signs and symptoms since I was a baby. I’m considered mild but I have a 20% delay. Not all people who have gastroparesis cannot eat. I have only had a two year period where I couldn’t eat and there were other underlying factors. The guilt trip is unnecessary and only serves to make the reader feel bad if they come back to read it and I, quite frankly, almost didn’t answer you out of spite. I am not obligated to answer you as you are asking incredibly invasive questions to a stranger on the internet. I am answering because I’m assuming you’re asking because you need help. For future reference.
Your smile is so contagious! Love your videos girl!
Wow your videos are so helpful! I can’t wait to share them with my patients. You are way more interactive than the manufactures videos.
Kate that’s awsome! Thank you 🙏🏼💕
Thanks for the informational video! I just received a diagnoses of Gastritis and Gastroparesis in Jan 2018. Sending hugs to you :)
ruclips.net/video/nE6mYknR9GI/видео.html
I only stumbled onto your channel! I find this ironic as my mum had gastropereisis. My mum had two tubes, in her stomach as the nasal didn't work for her. She had a G and a J tube (I never learnt what that meant) she used all sorts of pumps but eventually settled on to the free to go pump because she was able to go out more with that. She bought a bag actually made to hold the pumps and feed bottles. Was very interesting to see someone else with this illness as I don't know many people that have it.
G means gastostomy and J means Jejunostomy. It's just a hole through the skin, fascia, and other tissues into the gastric antrum (G) or the Jejunum (J). Hope that helps!
Do you get hungry? Does the feeding tube make you feel full?
For me, it doesn’t make me full. I do get hungry quite a bit but I’ve learned how to ignore it.
She said that her feeding tube goes into the intestine and not her stomach, so yeas she gets hungry because there is nothing in the stomach
No it doesn’t I have an feeding tube
ruclips.net/video/nE6mYknR9GI/видео.html
Very interesting videos. As a fellow tubie my thoughts are is quite a cumbersome set up. You can get dual port giving set add ons from Nutricia. Then you can run both feed and water at the same time and only need a single pump and a single giving set. You can use the Flocare Infinity pump which is far smaller, easier, lighter and more portable and you only have to worry about 1 small pump. Far less hassle and easy to carry round.
☀️ Ｓｕｎｎｙ Ｄａｙｓ ☀️ i can’t use nutricia they don’t supply to my area or hospital I can only use kangaroo and I’ve actually switched to a joey pump now which is alittle smaller but I just use the two bags and one giving set like in the video xx
Amy Lee Fisher oh that’s a bummer about the postcode lottery thing! So typical of NHS. I can relate to that with other equipment. Love your positive spirt. All the best. 😊👍
I watched this video while I was making up my feed 😂
ruclips.net/video/nE6mYknR9GI/видео.html
Hi Amy! Can you tell me what you using to make the electrolyte water? Im using regular water now but i have POTS to, so the electrolyte sounds great. Thanks for sharing this video!
Amy i love your videos! 2 youtube accounts? Ahhhhh im new to this channel..been watching the other one everyday. So here goes some binge watching lol yeehaw!
Really interesting that you can do flushes through your pump, I've never seen one that can do that before...
Awesome video! Love the setup! ❤ Hugs!
Getting a feeding tube soon...just hearing you saying you can ask questions..🥺
I have a question regarding the formula. When your having a icky day and vomitt alot... Do those formulas cut down on the acid in your stomach? Also, does it give a horrible after taste? I have g.i issues (going on 20 years) but basicially ignored it and lived with my nasty symptoms. Now 28.. Its really taking a toll on me. I need to look into the one you use... Although i have no issue with gaining weight... The complete opposite. Anyway, i love these educational videos!!!! 🌻
putting it together is like a dialysis machine, that's neat. oh and you may have answered this question already but can you drink anything by mouth, and can you eat anything solid? or do you always have to use the feeding tube?
Thanks for teaching people about this, you are amazing. Do you only eat that way? Can you chew something? Thanks!
PLEASE MAKE MORE VIDEOS LIKE THIS! =)
TMI - how do your stool samples differ from before these supplemental feeds? Did each different brand create different stool samples and cause diarrhoea or constipation? I know you shouldn't be able to taste it through a feeding tube but have you dipped your finger in to try a taste? Are there different flavours?
You also didnt start your feed straight away, would it not coagulate while its hung on the IV pole and block the tube?
P.S. What is in them that make them so calorific?
Lots of love x
I love watching ur videos BC I asked well have a GI disease its not as bad as most people with my disease but I have a mild case of crohns
Hugs!!! Love you’re Bravery!!! You Inspire!!
Forgive me I just stumbled across the channel what happens if she eats by mouth
The reason she has the tube is gastroparesis, meaning her stomach is paralysed, so after a while she will most likely throw up the food because her stomach can't empty it. That's why she needs the tube because her body can't pass things through her stomach to be properly digested. This is a bit late, sorry, but maybe it helped Idk.
@@lelap.1486 it helped me thank you!
mary petrosino she vomits it back up and become very sick
I watch all your videos but have been extremely ill last 2 months no need to explain to you I'm sure. I wanted to thank you! With ALL of my heart THANK YOU! you're putting your whole life and medical struggles online for everyone to see and I know there's alot of nasty rude comments at time and some days I wabt to answer back to the extremely rude people BUT I'm one that bieves if I start saying things back at them it all shows I'm just as wrong as the are and that sometimes the best and smartest thing to do is keep quite and move on. Anyway an again I want to thank you for everything you talk about the good, bad, and just plain nasty.i myself have MANY illnesses one of witch is killing me and I have been connected to one tube and another and so on. The one thing I have never had was a permanent tube unfortunately my body my intestines, liver and my one and only kidney I was born with is not doing well either so now after many longs painful surgeries and so on I have come to the point that it is 100% needed. Up until now I have been so scared of what it will be like, how people see me? Will I remember how to do it all? Watching you and listening to your bravery and soft spoken loving voice makes things feel a little less scary. So thank you for sharing your thoughts, fears, scary moments, sharing results you get back and share with us. You share your relationship with Tom, and your friends and other family. You ARE an AMAZING,STRONG & LOVING & BEAUTIFUL young lady. You are ALWAYS in my thoughts and prayers. God Bless you Beautiful!! love you with all my heart you're like a long distance cousin and I think about you daily. Sending TONS of love from Texas! 😘 ❤
EDS Girl got guns 💪 impressive, just like the rest of you!
Nice pole do you put string of Christmas lights on at Christmas time?
I am praying for you. You are a beautiful women and one of the bravest I know of. Bless you, you're one of my adopted granddaughters.
Can you drink water without getting sick?
Love you so much... Can you film the morning routine? ♥️
I dont have eds or gastropirisis(spelling??) But i absolutely LOVE these videos of yours. Theyre so interesting to me❤
Omg I live in Australia too 😍😍😍
why is it that flushes are painful for you? and why are they less painful through the pump? it’s the same sterile water regardless of how it’s given right?
Bumpy Back Roads when you flush thru the pump it does it slower so it's not as much fluid all at once. That's why she said she was going to do not kinda slow. When the pump does it, it is over a pair of time not in just a few seconds or minute. I hope that makes sense. Cause since hers does not go into her stomach it goes in to her intestine it is a smaller area to push the flush into. Your stomach or a larger space the your intestine. That was how it was explained to me by my GI doctor..
So so sorry if this is a silly question but if you don't eat, do you still go to the toilet?
Sophie Moore her tube goes straight to her small intestine so she still goes to the bathroom. Her issues are mainly with her stomach so this keeps her digestive system working but won't irritate her stomach and keep it down. Hope this helps
Shelby Lovelace that has answered my question thankyou :)
No prob!
I can totally here your Australian accent when you say “here” 😂cause I know you lived there from like 11-16.
So I think I already know the answer to my own question but I'm going to ask anyway can you eat any solid foods or have any fluids or is it all by the feeding tube ???
Holly Ross I have gastroparesis and I know everyone has it differently but this is what my experience of it is so I hope this is helpful. For gastroparesis patients, some don’t ever need tubes cause they can tolerate food enough not to need a tube but for me and other patients you may need to be tube fed, however that doesn’t mean you can’t eat or drink. I am told by my doctors and dietician to try and eat solids, not much but eat a little bit a day, however it does always end in me being sick several hours later. I can also drink but that ends up in me being sick aswell. My gastroparesis is worse when I don’t eat because my body becomes used to being tube fed and then can’t tolerate food at all. But in the short, yes, gastroparesis patients can eat but obviously most of it comes back up because it can’t be digested properly, hope that was helpful
You're so cool. Keep up the good work!
This was a great video thanks for making it.
Awesome video!
That's cool. I mean, it's interesting 🤔🤔🤔 Thanks for the video
This video reminded me of how much I don't miss how gross feed looks lol !! What's worse feed burps or feed farts ??
This may be a stupid question but when you have a feeding tube do you feel hungry? Like does your stomach growl and send the sign to your brain that you need the tube formula?
@@haylyespin9134 it depends on why you have a feeding tube, like in Amy's case I would guess that she will feel hungry but because of her condition she cannot physically eat, where as someone like me I have no energy or appititte when I'm on tube feed so I am on it for nutrition as I don't have the energy or appititte for food
And it's not a stupid question 💕
@@gxb3600 thank you! 💕 I've always been curious as to how a feeding tube through a nose works. My little cousin has one in his stomach and that was the only feeding tube I knew about for a long time. He could still eat certain foods and told us when he was hungry. Random curiosity lol
Looking for a solution to HOLD/HANG the feeding tube.
Care taker of the old unconscious bedridden patient is his spouse itself.
2 Hourly Feed frequency is taking a toll on her. Especially as any extra help is not possible due to corona situation. So any guidance for a Feeding Syringe Holder is greatly appreciated. TYVM
When you store the feed for the next day, do you have to refridgerate it?
Rachael Lynne yes xx
You're so great!
I understand that eating solid food is difficult for you bit ive noticed that you really like food, have you ever tried just chewing and spitting it out? When my friend had his feeding tube put in this is what he did 0-0
Could I ask why it’s painful to flush your tube?
I have a question, so say it was the morning and you finish all your feed, can u take the tube out until you need your feed again or do u have to keep the tube in? Or can u just choose to keep it in? ilysm ❤️
girly Dani I can’t take it out because it’s in my intestines so if I was to remove it I would have to go back to the hospital each time to get it placed and my most recent tube placements were that hard that I had to be put under general anaesthetic for it 😬 but I wish I could take it out when I wasn’t feeding that would be so amaizng!! 🙏🏼🙏🏼
Also with any kind of nasal tube, removing and placing tube is really irritating. The more you mess with it, the more your nasal passages can swell and make it more painful and difficult to re-place the tube. Even with an ng a lot of people chose to leave them in
is this feed simialr to e028x? loved this video x
Fran Gray it’s virtually the same just a higher cal not by much if I remember e028x is 0.6 cals per ml where as vivonex is 1 cal per ml xx
Super interesting! Have you thought more about getting a surgically placed tube?
Chloe Rose yes somthing I’m seeing my GI surgeon about in March xx
I hope it goes well! Love your videos :3
I don’t have a tube but I eat baby food because it digests way better for me I have Gastroparesis too also I’m taking a medicine and it’s helping a little bit I think when I turn 18 a new gi doctor will help me more
how do u go to school or do anything
I like so much your channel
How long does each feed last?
I love you amy so much❤❤😍😍 I love you amy and tom so much ❤❤😍😍
Yes I do
Wow that you are not interested in me plaese said that you
I know this is an odd question and you probably answered it but why is your tube so long?
Where abouts in Australia do you live? I'm a home dialysis patient and it's so nice to see another strong independent woman taking care of her chronic illness ❤ hope your doing well :)
In the description, it says if people wanna send her anything, there's a p.o box for WA.
I also have bad nausea and heartburn and acid reflux and diahreha and constipation from Gastroparesis it sucks
jjjb2khmu hmm hnnjjmjj
As annoying as all that may seem it becomes extremely obvious how much it helps me (I can’t maintain my weight on my own so I’m always underweight) when I can’t get any due to a change in insurance. (I’m american) my insurance says I can only get the system if I need it. So the only option I have is to wait until I’m dangerously thin and become hospitalized. and my doctor says I will die if I don’t get it. And even then it’s only a 50/50 chance I’ll get it.
Very interesting and informative video. I have a question for you (Sorry if you already answered it I’m French so I may not have heard you answer it hehe) Are you able to feel hunger and do you feel full after your feed? Also I would like to know what does flushing your tube means and why it hurts?
Katherine Levrioux I somtimes get hungry but not really and the feed doesn’t really make me feel “full” it just kind of makes me feel bloated and uncomfortable and flushes are painful because it’s a lot of fluid in a small space so it’s painful and the reason the tube has to be flushed is to stop it from clogging. Hope that made sense 🙏🏼🙏🏼🙏🏼
Yes that made sense thank you!
I’m Good is your Christmas gift for family
I'm sorry to ask but how do you take a shower?
6“Whoever visits a sick person is plunging into mercy until he sits down, and when he sits down he is submerged in it.” (Silsilah Al-Saheehah)And the Prophet also said:“Whoever visits a sick person or visits a brother in Islam, a caller cries out to him: ‘May you be happy, may your walking be blessed, and may you occupy a dignified position in Paradise.’”6Happiness and optimism are Islamic virtues when they spring from trust and hope in God.Likewise sadness and pessimism are sinful when they reflect a state of despair in the Almighty.Therefore, regardless of how bad or “incurable” the illness, the one visiting the sick should encourage him with hope in God, Who has power over all things, including the chronically, even terminally ill.“Is not He (God) able to give life to the dead?!” (Quran 75:40)“...And in God should the believers put their trust.” (Quran 3:122)Besides trying to help the sick forget their pain, suffering, discomfort and hardship -even if only for a short while -the visit should also serve to boost their morale, lift their spirit and strengthen their resolve.Abdullah b. Abbas, the cousin and Companion of the Prophet, related that when visiting a sick person, God’s Messenger would say:“Be steadfast, may God purify you.” (Saheeh Al-Bukhari)What’s more, the visitor should use the occasion of his visit to remind himself and the one being visited of their total and utter dependence upon God; that it is better to suffer in this life than the Next, and that He, Most High, will reward the believer who is patient and firm when put to in trial.6Al-Tirmidhi.
7“...And (righteous are those) who remain patient in times of poverty, sickness and during conflict....” (Quran 2:177)Tactful speech is advisable during the best of times.The one visiting the sick ought to be especially sensitive and carefulwith his words when in the presence of the suffering.After all, exacerbating the patient’s distress might lead to a worsening of their physical condition.And just because a person may be incapacitated due to their sickness, it does not mean that they forfeit their right to be obeyed in their own house, nor that their privacy go un-respected.The scholar of Islam, Imam Ibn Abdul-Barr, wrote in his book of Islamic jurisprudence, Al-Kafi:“Whether you visit a healthy or an ill person, you ought to sit where you are told.Hosts know better how to ensure privacy in their home.Visiting an ill person is a confirmed Sunnah.The best visit is the shortest.The visitor ought not to sit too long with an ill person, unless they are close friends and the ill person enjoys their company.”As for the length of the visit, if the visitor is sincere in his intention, once he has achieved the objective of his visit, he would have no reason to burden the sick person with a prolonged stay and unnecessary disturbance.The Syrian scholar, Shaykh Abdul-Fatah Abu Ghuddah, wrote in his book on Islamic manners:“The length of the visit should not be longer than the time between the two sermons of Friday. In this respect, it was said that the visit should be long enough to convey salaams and wishes, to ask the sick how they are doing, to pray for their recovery and to leave immediately after bidding them farewell.”The point being that the visitor must show compassion at every moment and opportunity: compassion through the appropriateness of his words, compassion through the correctness of his conduct, and compassion through the brevity of his stay; all in the sure
8knowledge that doing so would lend him towards God’s Compassion, as His Beloved Prophet said:“Show mercy to those on earth, the One above the heavens will show mercy upon you.”And from the most compassionate of actions is to emulate the Sunnah(inspired practice) of the Prophet Muhammad in visiting the sick.That is because to say and do as he did is the surest way to bring about success in both this life and the Next, for both the visitor and the one being visited.From the many Prophetic narrations that have reached us in this regard is the narration of A’isha, the wife of the Prophet, where she said:“If someone fell sick, the Prophet would pass his right hand over them while saying the following prayer: ‘O Lord of humanity!, take away the suffering, bring the recovery, there is n
Does you ever take your feeding tube out?
Kayla Mc Dowell she can’t take her tube out cause it’s in her intestines, not her stomach. it is placed and removed by a doctor
@@14SEK14 i think she meant the ng tube
@@kaylaray151 no because she had NJ feeding tube
Why do you have to use sterile water? Does anyone know
Why do you have to feed 2 pumps
Why can't there be air in the tubes?
I think it’s very interesting
How do you use the restroom?
It a bath room
Do taste food still or taste formula ?
Dollar tree Shopper you can’t taste anything cause it doesn’t go into your mouth or even stomach, it goes straight to your intestines
are you going to be getting a jtube.
Those things should have presets so you don’t have to keeep typing it in every feed.
I have a tube as well too feed me I get hungry very hungry
Ohhh I can here a little bit of a accent in this video !
Mollie Vickers
She's Australian
Ravi she’s not, she’s British but she lives in Australia
Why you have feeling tube for
Emily Canty she has a feeding tube because she has gastroparesis (I have gastroparesis also so I hope I’m helpful) where your stomach is paralysed and can’t digest food properly so when you eat by mouth, a few hours hours later, you will end up throwing up the food you ate so the feeding tube is a way of getting all your nutrients without being able to eat. Hope that was helpful
Oligomeric feed is the semi-elemental feed name, I found out from my dietician...
i have a feeding tube an NG tube
Rip Amy
2Islam invites to all that is good and warns from all that is bad.From those good and virtuous deeds is the visiting of the ill and afflicted.When people visit each other in good health, bonds of brotherhood and friendship are strengthened.How then when people visit each other in times of sickness and poor or failing health? Illustrating the empathy that Muslims are required to feel for each other, Prophet Muhammad, may the mercy and blessings of God be upon him, said:“The parable of the Believers in their mutual love and mercy is like that of a living body: if one part feels pain, the whole body suffers in sleeplessness and fever.”1Visiting the sick is from the clearest signs of such mutual love, mercy and empathy.More than that, visiting the sick is a major responsibility that every single Muslim is duty-bound to fulfill.The Prophet Muhammad said: 1Saheeh Muslim
3“The rights of one Muslim over another Muslim are six... When you meet him, you greet him with the salaam(i.e. to say: “As-Salamu alaykum”), when he invites you, you accept his invitation, when he consults you in a matter,you give him sincere advice, when he sneezes and praises God, you ask God to have mercy on him, when he is sick, you visit him, and when he passes away you accompany him (through his funeral).”2In this Prophetic narration) we find that the Muslim is encouraged with concern for his brother in Islam during the three phases of his worldly existence: his health, sickness and his death.Whilst in good health, the Muslim is obliged to greet his brother in faith with the greetings of peace and protection, to accept his invitations and to give him sincere advice.Then, when the Muslim is suffering from a cold, an allergy or whatever else is causing him to sneeze, his brother in Islam is obliged to ask God to have mercy on him. Likewise, when the Muslim’s sickness is such that he is incapacitated, his brother in Islam is obliged to visit him.Finally, when the Muslim passes away from this life, his brother in faith is obliged to accompany his funeral procession, prayer and burial.The great reward awaiting those who visit the sick was spelt out by the Prophet when he explained:“A Muslim visiting his sick brother will continue to be in the harvest of paradise until he or she returns home.”3And God’s Messenger of Mercy, Muhammad, also said:2Related by Abu Hurayrain Saheeh Bukhari.3Saheeh Muslim.
4“A visitor walking to visit a sick person will be wading in the mercy of God.When the visitor sits with the sick one, they will be immersed in mercy until his or her return.”4God Himself explained the importance of and greatness of the reward of visiting the sick. The Prophet said:“On the Day of Resurrection, God the Mighty and Majestic will say: ‘O child of Adam! I became sick and you did not visit me!’ The person will say, ‘O Lord, how can I visit you and you are the Lord of all that Exists!’ God will say, ‘Did you not know that my slave ‘so and so’ became sick, and you did not visit him? Did you not know that if you visited him, you would have found me with him?’” (Saheeh Muslim)As with every other virtuous deed and noble duty, Prophet Muhammad led by example.He would both make time to personally visit the sick and also enquire after them through others.Whilst in Mecca, for example, a pagan woman was given to throw filth and garbage upon the Prophet whenever he passed her house. One day, the noticeable absence of the Prophet’s abuser concerned him so much that he enquired after her.When he learnt of her sickness, he visited her.She was so taken aback by his merciful concern and that she embraced Islam.“Repel (the evil of your foe) with what is better: then lo! the one between whom and you was enmity (will become to you) as if he were a dear friend.” (Quran 41:34)The learned Companion, Anas b. Malik, also related the following episode from the life of God’s Final Prophet to humanity:“A Jewish boy who would serve the Prophet fell sick, so the Prophet said: ‘Let us go and visit him.’ They (the Prophet and his illustrious Companions) went to visit him and found his father 4Imam Ahmad and Ibn Hibban.
5sitting by his head. The Messenger of God said: ‘Proclaim that there is no true deity worthy of being worshipped except God alone, and I will intercede on your behalf on account of it on the Day of Resurrection.’The boy looked at his father and the father said:‘Obey Abul-Qasim (Muhammad)!’ So the boy uttered: ‘There is no true deity worthy of being worshipped except God alone, and Muhammad is the last Messenger.’ The Messenger of God then said: ‘All praise is due to God Who saved him from the Fire of Hell.’”5From these two examples from life of the Prophet, we find that it is not a precondition that the sick being visited are from within the fold of Islam.Nevertheless, from these two examples, we find that the act of visiting the sick and suffering, as exemplified by the Prophet Muhammad, can be such a touching and moving experience that it might even cure that most fateful of diseases: infidelity.“Indeed in the Messenger of God you have an excellent example to follow for whoever hopes for [the meeting of] God and the Last Day and remembers God much.” (Quran 33:21)The rewards for visiting the sick are great in both number and magnitude.The Prophet Muhammad said:“If a man calls on his sick Muslim brother, it is as if he walks reaping the fruits of Paradise until he sits, and when he sits he is showered in mercy, and if this was in the morning, seventy thousand angels pray for him until the evening, and if this was in the evening, seventy thousand angels pray for him until the morning.” (Al-Tirmidhi)And he, Heavenly Salutations be upon him, also said:5Ibn Hibban.
Are you upset that she’s showing her arms or something?
Good morning Everyone
How do you not get hungry ? I would have gone mad 😱
Amy lee you have a tube like me
🙏💙🙏💙🙏💙💗
Heyyyy amyyyy
why cant you just drink it after you blend?
Julian Walker because her stomach doesn’t work like a normal stomach - reason for the tube, and the feed actually goes into her intestines so it can be absorbed and all the nutrients she needs, into her blood.
I know this might strech far but have you ever thought about trying CBD oils? It helps tremendously with pain, and other issues it helps with my epilepsy and nausea, so it might help you out❤
Please your vlog in hindi
I got a gtube up my nose no way
51 views and 10 likes at this time
Hiiii
You only have 1000 calories a day?
She does this more than once in a day
wat if u wanted to have a baby one day in the future
If you burp do you taste it
Margie Dianne carter nope because the feed goes into my intestines not my stomach xx
Margie Dianne carter I had an ng tube (goes into your stomach) for a bit and with those you can definitely taste it 😖
Hi lovely I know you are busy and poorly and can't always answer everyone. I have sent a DM on Instagram to you. There is a personal thing I would like to ask u with something I have massage trubble with but I dont want to put it publicly. I was just wondering if it is something you struggle with at. I hope you may get chance to take a look at my message lovely. If you can't I do understand.
Love your videos. I have been leaning so much from you. Hope you are do as best you can today sweetie. Xxxx
Sorry I ment something I massive trubble with 🤔🤔 love predictive txt and how it like to change my words 😄 lol xx
Could you tell me your name on insta and I’ll try and find you 💕
Amy Lee Fisher sorry babe I forgot to put my Insta name.
I'm Alyson podmore on there. The my tag name is alydav82 💜😊
Thank you lovely xx
Ay I eat vivonex too
So...don't you eat real food?
Sa ra she can eat real food, but her stomach digests it really slow, and can cause her stomach pains.