I Have a Trach Tube & Use IV Nutrition (TPN). Why I Do NOT Have a Feeding Tube. Life with a Vent
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- Опубліковано 8 лют 2025
- For many years, I have had GI pain, nausea and vomiting. People never questioned me why I used iv nutrition called TPN. That is, until I got my tracheostomy tube. Now, everyone assumes I need to use a feeding tube, and furthermore, using IV nutrition is not necessary. Join me this week as I briefly explain my long history of GI issues and need for TPN. #lifewithavent #tpn #feedingtube #piccline #chronicpancreatitis
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I've been in nursing 20 years and your story is one of the most powerful I've ever heard. People talk about healthcare "heroes," but all that pales in comparison to what you've experienced and handled with intelligence and courage. You are the hero of your own story.
Thank you so much. I appreciate all your insight and kindness.
My goodness, you've been to hell and back! What a STRONG, COURAGEOUS lady you are!
Thank you so much.
I'm so glad I found your channel months ago! You are so informative, but in a way that is fun to watch! As someone who is also chronically ill (not to the same degree), it makes me feel less alone watching your videos. And the frustration with doctors/medical providers! I understand that too well.
I also love your sarcasm!
Thank you so much. I appreciate your kindness. All my best to you.
So glad you somehow showed up in my world at 2am this morning .
You are an amazing beautiful shining light.
Your honesty and humor is so refreshing.
Sending you pure love.
Thank you sweet girl.
Thank you so much. I appreciate all your kindness.
You are the strongest person that i have ever come across. You keep smiling each day no matter what you go through
and that's admirable ❤ thank you for sharing your story with us. ❤❤
She is the strongest 🥰
Thank you. I appreciate your kindness.
GP and intestinal issue gang! I’m on a feeding tube (PEJ tube into my small intestine) and TPN because my intestines are partially paralyzed. I have ehlers danlos syndrome, which has caused nerve damage. Also, totally relate to the small intestine vomiting… it’s absolutely horrible. The lack of healthcare is wild, I was told I had an eating disorder, munchausen, etc. until I was also in heart failure. I went undiagnosed for 14 years, and died clinically 4 times by the age of 14. TPN has saved my life.
I’m so glad you’re getting nutrition now. I hope that you’re able to continue to get as much nutrition as possible, and continue to live as well as you can. Sending spoons and love ❤️
Thank you for sharing some of your story with me. I am sorry you have gone through so much. I cannot imagine everything you have endured. Thank you for all your kindness. All my best to you.
Life with a vent, you have been and are going through a worse hell than me. My heart goes out to you.
I am sorry to hear you were not believed by the medical profession. Doctors can be arrogant; they don't like it when a patient is more knowledgeable about themselves than they are. I am sorry their actions hurt you. Many chronically ill people have gone through the same thing.
Sending love and hugs your way. I wish you all the best.
Thank you for sharing. I appreciate all your kindness. All my best to you.
You're a very strong person. let's hope the doctors keep you on tpn ❤ your video is very informative. Sending 🥄🥄🥄🥄🥄🥄🥄🥄 and hugs❤
Thank you so much. I appreciate your hugs and spoons.
After all this bad experiences with the health system, I feel like you would have become the best (at least the most empathetic) doctor in the world!
Thank you so much. I appreciate all your kindness.
I really admire your strength,tenacity and perseverance.. especially when it comes to getting good(if that can even be applied anymore) healthcare.i hope you pamper yourself ☺️
Thank you. I appreciate your kindness.
I wish more people can see your channel. I learned so much from you. You have no idea how much you help us. thank you so much for sharing with us.
Thank you so much for your kindness.
I'm really glad the YT algorithm gods suggested me your channel!
Thank you for sharing your story so openly and authentically. Your courage and vulnerability are truly inspiring. You are such a bright light, and your words have a way of pulling my heart strings.
Listening to your journey has helped me step back from my own struggles and gain perspective on what truly matters. Despite my own mental health challenges, your strength has reminded me to keep pushing forward and to believe in the possibility of brighter days ahead.
Thank you for being a beacon of hope and resilience. The world is better because of voices like yours. Keep shining! You're truly making a difference!
I subbed to your channel and I'm looking forward to your next video!
your videos are always so informative and you're a very inspiring person
Thank you so much.
@@LifewithaVent you're welcome!
I know you were just doing and informative video. But your information has sent me down the rabbit hole to know what to avoid eating to keep from getting future pancreas attacks. Doctors were less than helpful in that department. So thank you for giving me somewhere to start.
Also thank you for sharing your story.
Thank you for sharing. I am sorry to hear you get pancreas attacks. I am glad the video was helpful. If you have any questions or concerns about the pancreas, how to prevent pancreas attacks, etc., please feel free to ask. All my best to you.
You are an inspiration!! You should put together a comedy routine. You have such a unique way of handling all this. You ROCK!!
Thank you so much. I have started creating a comedy routine, but for the moment, it is on hold. I nearly broke my toe on Tuesday when I got too excited doing my routine for a friend and accidentally kicked a cabinet trying demonstrate something. LOL!!!
@@LifewithaVentGod bless you utterly.
When I see you've posted a new video I immediately click as you're a bright light in the darkness of medical misinformation and also, a charming personality who does more good than almost anyone I've come across, from within the chronic illness and disability community.
It delights me to hear you're planning a comedy routine and pray you can finish it, God-willing, once you're feeling better and strong enough. Sorry to hear about your toe, mind! 😅
Much love to you and yours
@@Salam99-1 Thank you so much. I appreciate all your kindness.
You are so inspiring. Thank you for sharing your journey.
Thank you. I appreciate your kindness.
You are a beautiful and good-natured person as you present your medical journey. Refreshing. Your sense of humor rocks! I value the information I receive on your channel.
Thank you. I appreciate your kindness.
I just want to tell you that I am so sorry you have gone through so much pain! You have the best attitude about it, too.
I am happy for you having TPN. I hope you keep finding ways to improve your quality of life. You are so amazing‼️❤️
Thank you. I appreciate your kindness.
I know it’s a sacrifice for you to make these videos. But they are so helpful for those of us who need encouragement, and they helped normalize TPN for me. They also help me as I explore underlying causes for myself and others who have complex health issues. So thank you for chronicling your journey in this way. I hope you are refreshed after your labor!
Thank you. I appreciate your kindness. All my best to you.
It's truly inspiring how you overcome obstacles. Few people have that kind of strength and perseverance despite such health problems. And on top of that, you have to deal with the healthcare system and doctors...
God is a rewarder of those who diligently seek Him.
May Jesus bless you!
Thank you. I appreciate your kindness.
you are incredibly strong, wishing you the best!
Thank you.
I just got out of the mental institution and the first thing I did was watch you because you cheer me up
I am glad to hear my video cheered you up. All my best to you.
Sorry, I know this is unrelated to the very important video topic, but I had to comment on how pretty your hair looks. So shiny!
Thank you. I appreciate your kindness.
God bless you, I will try very hard to not complain about my little stuff compared to everything you have gone through. You are so talented by the way.
Thank you. I appreciate your kindness.
i love the way you describe things. one can't mistake your meaning and somehow you make awful events and treatment almost sound amusing. the last thing my father taught me was to find the humor in even the worst circumstances of health.
Thank you for sharing. That is great advice. Thank you for all your kindness.
I'm so sorry you've gone thru so much pain and misery all these years. I myself started having gallbladder attacks at 17, then started getting extremely sick by 20. I had to quit college due to constantly throwing up bile and being nauseated. Doctors weren't sure what was wrong with me. I had no insurance at the time, so I suffered a lot. They just kept doing the same tests that didn't show much. At 23, I finally got insurance and got my gallbladder out but of course it is not a cure all. It helped some of my symptoms but definitely not all. I then I developed BAM after removal and still have GERD and bile reflux gasteritis. I also have other chronic multiple none fatal health conditions at 36. I deal with symptoms daily, but despite all that, I feel like I just got a mild cold compared to all you've been thru. I really hope you're feeling and doing better now. Thanks for sharing your stories here. I'm sure you help others with your knowledge. Take care.
Thank you for sharing some of your story with me. I am sorry you have gone through so much. I cannot imagine everything you have endured. Thank you for all your kindness. All my best to you.
Omg you such a strong human being you are an inspiration ❤
Thank you.
I could relate to your story because I also have CIIPO (and a happy attitude). My story is very much like yours. I could esp relate when you said something to the effect of my doctor left me as that recently happened to me. Thank you for sharing your story. It helps me realize I’m not alone. You got this!
Thank you for sharing some of your story with me. I appreciate all your kindness. All my best to you.
Admire you so! You're a GREAT inspiration to people.
Thank you.
You are the G.O.A.T.!💪💪
Thank you.
You're so humorous. Love it.
Thank you.
Wow...just WOW
Thank you for watching.
If the doctors ignore someone so educated in the field, imagine how they ignore us the common mortals...
Thank you for sharing. I appreciate the insight.
You are probably 1 of the 10 strongest human beings
Thank you so much.
God bless you. I will pray for you and your happiness.
Being positive in this state.❤️
Thank you.
You are well-deserving. I look forward to your videos.
Thank you so much.
On top of all that your parents named you Life on a Vent. Lol You're a hoot! Guessing you don't skate anymore. No one should have to deal with that much. At least you are beautiful! You always make me feel like I have no problems. I hope someday medical science gets to the point where you make a video telling us how you have been completely cured. Not likely I know but you so deserve it.
Will pray for a complete healing for you!
My late mother had 2 pic lines at one time- and those lines even gave her a blood infection, which she thankfully was able to recover from.
Oh sorry, got your name wrong, Life with a Vent. Lol Have a good day!
unfortunately most babies born die in infancy or childhood until the last hundred years. Medical science keeps those with chronic illness alive but not without a cost. Life is not a given by any means. Life is not and never will be fair. Acceptance of this is difficult but helpful. I am glad she finds peace with God. Some of us are physically healthy but not mentally..and alone. Relationships with others are so important as social creatures.
@@Rancher-oh7ew Hello. No, I do not skate anymore. Thank you for all your kindness. I really appreciate it.
I remember you enjoy food on the sea voyage (besides the allergy accident at start) - good appetite with compatible food always❤👍🌻
Thank you for all your support and for watching my videos.
You would be the Best medical professional.
Thank you.
You sure have gone through a lot. I have actually is the same similar issues except I have insulin resistance and I don’t vomit very easily at all even though I’m nauseated so I learned how to eat anyway and yeah, I have a lot of pain but something inside me tells me that eating is better than starving because I feel like I’m digesting my insides if I don’t put something in there.
You sound like GLP-1 inhibitors would help a lot....
Thank you for sharing some of your story with me. I am sorry you have gone through so much. I cannot imagine everything you have endured. All my best to you.
No one goes on TPN rather than feeding tube if there is a choice. You're such a fighter, to have this many issues with your body.
Thank you.
There are two things might improve your quality of life measurably: methylene blue, increasing your ATP production capacity, photobiomodulation, which increases mitochondrial activity. Not being able to make enough fuel because of autonomic dysfunction seems to play a role in conditions similar to yours. Not suggesting a cure. Just might help some. And quercetin as a mast cell inhibitor changed my life.
Thank you for sharing. I appreciate all the information and insight.
What a journey so far...u r really very brave to go through..PICC line is a life saver, can stay up to 6 to 9 months...
Since how long u r on TPN ??
I have been on TPN since 2021.
I have gastroparesis. I have a gastric pacemaker. Which had quit working. Now waiting to see what's next.
Thank you for sharing some of your story with me. I am sorry you have gone through so much. I cannot imagine everything you have endured. I hope everything goes well for you.
You have probably helped as many people with your channel as you would have as a physician. Just a question that you may have addressed: So, with a restricted diet like this, how often do you defecate? Does it happen naturally or do you need to use laxatives or enemas?
I still go about once a day. When I get really sick, and my GI tract shuts down, then I might need to use laxatives. Besides that, I go naturally.
YOUR BBBBBB LLLLAAAAHHHHHH was so good and funny. I should share a photograph of what a skinny child I was. Super skinny. I've never remembered a time without a heating pad. Or going to the ER with pancreatitis. my problem has always been tomatoes, salad (I love it) and any fat. Mind you, my cousin and I were both having issues, and she had a diverticulitis burst. But how could teens have diverticulitis? Why did we tend to faint in heat, why did we both have scoliosis,and why were we so flexible. Well, EDS, and my brother had a lesser version. So, as usual, you never have just ONE weird disease thing. EDS and my cousin and I have arthritis, my brother finally. had to lose his intestines. Now my cousin and I are "fat" (we love doctors telling. us to lose weight, when it is the steroids and other medications that have caused this). We both see many different specialists. The"best" is the liver specialist. We travel hours to see her. She will tell us (we do see her separately) that losing weight is the only way we will get over the fatty liver disease we have as we are fat. (Not fat as in a wheelchair or people stare at us). She says there is NO TREATMENT. So the meds we take to keep us alive, and not in horrific pain, and allow us to work and earn money so we are not on disability, are also killing our livers. We have both chosen less pain and earlier death.
Thank you for sharing some of your story with me. I am sorry you have gone through so much. I cannot imagine everything you and your cousin have endured. Diseases/medical conditions which affect the pancreas also often affect the liver. It is not uncommon for someone with chronic pancreatitis to have liver disease.
I used to have non-alcoholic fatty liver disease. I did two things to get my liver on the track to better health. First, I started eating organic food. The pesticides in regular food will overwhelm your liver. The liver's function is to detoxify everything which enters your body. Unfortunately, regular food is LOADED with chemicals, which in turn, makes the liver very sick.
Second, I started taking supplements which help the liver. I take milk thistle and also a supplement called Liver Support by Eclectic Herb. I was able to reverse a lot of the liver damage, and now my liver is fairly healthy.
Feel free to do an internet search for "natural remedies for fatty liver disease". There are foods which help the liver as well as foods which hurt the liver. It might be worthwhile to look up this information to see if you might find something which helps you.
All my best to you and your cousin.
Hi, i have some questions, how kind of tpn do you use , do you still face difficulties in swallowing,
can we still enjoy food occassionally being on tpn ,if yes what you like to have,
Stay happy and blissful like this ❤😊
Thank you
Hello. The TPN is a special formula created by my pharmacy based on my nutritional needs. I do not have swallowing difficulties. If I am able to, I like to eat a small amount of fruit or vegetables.
My late hubby had TPN. It was wonderful
Thank you for sharing. I am sorry to hear about the loss of your husband. May his memory be a blessing.
@ you are an amazing human with one of the best personalities I have ever seen. Ive never seen anyone face adversity with such humility and grace. I do understand your fight with the medical profession, as my adult daughter is extremely ill with chrones disease and many many comorbidities and complications. Getting the medical profession to understand the things she needs just to attempt to function is nearly impossible. Please keep posting, I look forward to sharing your life with you. I pray things get easier for you
Thank you for sharing some of your daughter's story with me. I am sorry she has been through so much. Thank you for all your kindness. I really appreciate it. All my best to you and your daughter.
So you have a peg tube for feeding? My late husband had a feeding tube at one time, right after he had his accident in 1992 that made him a quadriplegic.
Thank you for sharing about your husband. I used to have a feeding tube, but now I use intravenous nutrition called TPN.
What if the pancreatitis was caused by parasites, which can be treated with Ivermectin?
Someone who has been iv tpn dependent for 8 years we recntky tried putting a j tube deeper in my small i testine see if i could possibly tolerate tube feeds again i wasnt able to tolerate bolus feeds but need continuous theres still times my gastroparesis gets so bad i have to take tube holiday but im glad to be off of tpn full time and we dont k ow when my gastroparesis will decided that thia tube feeds wont work again and ill end up back on tpn but for now fingers crossed. I still have picc line now in my femoral groin area for daily fluids and nausea meds . And ive had too much scar tissue in upper body so this is like last resort but it keeps me going
Thank you for sharing. I hope everything goes well for you.
I have EPI from chronic pancreatitis My doctor's prescribe make me Creon but it made me sicker.. So now im on a digestive enzyme gummy i found on Amazon.. 😮😢
Thank you for sharing. Some people have issues with Creon. Creon can make some people quite sick. There is another prescription digestive enzyme called Zenpep. A lot of people have better success with Zenpep. If you have not tried Zenpep, it might be worthwhile to see if you can get a prescription for it if you want to try a different prescription strength digestive enzyme.
I left a comment but it must have got deleted or didn't go through. I was just explaining how I also have a similar problem with my stomach but not sure what's going to happen 🙏♥️ praying 4 u. I wanted u to watch Joni Eareckson Tada u would love her. I was also saying how inspired I am that you keep such a bright smile through it all. God bless
Thank you for sharing. I appreciate all the insight. I looked through all the comments. I do not see your other comment. I am sorry you also have a similar problem with your stomach. I will look up Joni. Thank you for all your kindness. All my best to you.
Your hairs are very Beautyful.. I was saying my mom that unless you choose a girl with long shiny hairs I m not going to marry then today i shown your video to her and added long shiny hairs and very courageous......
Thank you, I appreciate your kindness.
@@LifewithaVentkeep smiling be happy.. Life is short unpredictable.. We all are destined for the same fate.. I learnt the lesson during covid... So keep smiling.. You are lovely❤❤❤❤❤❤
Do you get hungry for real food or is the TPN satiating enough?
Hello. I answer that question in this video: ua-cam.com/video/xengkn1TgdI/v-deo.html
Please feel free to watch it, and if you have any additional questions, please let me know.
You mean the NG tube?
I imagine that we are living in Victorian times. Back then, consumption was common, and it was quite fashionable. I was lucky enough to meet a beautiful and pale Victorian lady, We would sit and drink tea together, and talk.
Thank you for sharing. It sounds like you had a great time.
I know I am old and I am sure you already have it, but where is your buy me a coffee, beer button?
Tape worms can block multiple things, including the pancreas etc..
Thank you for sharing. I appreciate the insight.
My gosh what horrible care you have had. You seriously are a walking miracle. You must have terrible medical PTSD, same w your parents. Wishing you good health.
Thank you. I appreciate your kindness and support.
why did they not give you sedation for feeding tube implantation?! That seems like malpractice!! I am sorry for all your suffering. 💔US healthcare sounds absolutely awful!!
The hospital used as little sedation as possible (or no sedation) to do procedures because based on their research using very low levels of sedation or not using any sedation led to fewer post-procedure complications (heart attacks, strokes, cardiac arrest, etc.). Thank you for all your kindness.
I must have missed something in your video because I still don't understand why your parents gave you the name " Life With A Vent". What would a ventilator have anything to do with your vomiting up your food?
It's a joke. She doesn't give out her real name.
Hello. I am sorry for any confusion. For privacy concerns, I do not use my real name in my videos. Life with a Vent is just my UA-cam name. My ventilator does not have anything to do with me vomiting. I have chronic pancreatitis. I started becoming sick when I was a child. I did not get my ventilator until I was an adult.
“HAAAAaaa” 😅❤
Thanks for watching.
Hypochondriasis?
Thank you for sharing.
Do you have diabetes mellitus?
No I do not.
Im so surprised that people think we swallow down the trachea🥶
Also I’m sorry you’ve been gaslighted so much by medical “professionals”
Thank you. I appreciate your support.
Did you get COVID?
Yes I did.
Look up Polycythemia vera.
I will do that. Thank you.
@LifewithaVent You're welcome. Autoimmune diseases are interesting. We were studying MS today. However, they ignore nutrition in ttreatment. Perhaps some blood clots are immune diseases.
@@Christopher-b1p Very interesting. Thank you for sharing. I am sorry to hear they ignore nutrition in treatment.
I cant believe your care team abandoned you. Where is their duty of care? You would most def be able to educate some GI doctors
Thank you. I appreciate the insight.
When you got the feeding tube, why oh why wouldn't they use anesthesia?!?!? Not even local lydocaine or something?!?! How can they be so cheap. Maybe they could ask you to buy it yourself when the other option is a PTSD inducing procedure
Me watching alleve commercials at the break. lol 1 pill 12 hours!
The hospital used as little sedation as possible (or no sedation) to do procedures because based on their research using very low levels of sedation or not using any sedation led to fewer post-procedure complications (heart attacks, strokes, cardiac arrest, etc.). Thank you for all your kindness.
@@LifewithaVent But not even lydocaine on your abdomen and the back of your throat? If they had applied it generously at least you would've felt no pain or gag reflex. SMH
@@tanschi8449 That would have been great if they would have done that, but no, they did not use it on my abdomen or the back of my throat.
@@LifewithaVent I'm so sorry that ignorance, laziness or whatever has made such a hard experience even worse. Sometime we just need medical professionals to care and understand the sheer amount of emotional al physical trauma being chronically sick causes in our lives so they could really try their best to reduce it as much as possible
are you in a relationships rn?
Why do you smile all the time?
Weirdly it's probably because she's happy? She's a naturally smiley person even when things are really hard, I love that about her.
Let's hope no doctors keep you on TPN.
Thank you for sharing.
You're such a Amazing person
Stronger Together 🦸♀️🌠🦸♂️
Thank you.