➰All About Feeding Tubes! || Feeding Tube Awareness Week 2021➰
Vložit
- čas přidán 16. 07. 2024
- To kick off feeding tube awareness week I made a video explaining some of the different types of feeding tubes, how they work, and what they do! This is not medical advice, just my personal knowledge from living with different types of tubes. Thanks for watching!!
Instagram: Lauren.Boh
Music:
Music by MYSM - Look At Those Clouds - thmatc.co/?l=128F81BE
I have had an NJ since I was eight. Thank you so much! You give me so much confidence, and you make my day!
This was such an informative video, and you talk about it in a way that isn't confusing or stressful. Thank you!!
I've had a NG 4 a year when I was a baby, then at 2 yrs old I got the g-tube ! im 15 at the moment, and tysm 4 clearing it up more ! some of the tubes I never fully understood and this helped a lot ! ♡
thanks for all that you do for us tubies! trying to embrace my noodle nose because it helps me function and eat! happy FTAW! we are tubie strong ♡
I like the way you present your videos so professionally but from your own personal medical standpoint and expertise. I have been entertaining the thought of starting a CZcams channel using the same concept and style of presentation for years, but I'm afraid no one would be interested. I have not run into many channels that talk about real life experience and demonstrate the way they do things, using actual medical terminology, devices/equipment/supplies/models and in a more mature fashion.
My entire set up is very similar. I have an AMT MiniOne. After having Bard, then Mickey tubes for years, I did research and found there were even lower profile balloon-type button.
I had my first g-tube placed when I was an infant before they knew what was wrong with me. I was just labeled with failure to thrive. Then, from the time I was 7 until I was 21 I had one places in slightly different spot. This one always gave me problems such as very painful granulomas and raw skin from stomach acid leaking around the hole. My doctors just told me to keep putting barrier creams on it. It continued to get worse for many years. Nearly all of my shirts became stained and I was always embarrassed and in pain from it leaking. Then I had to have a Nissan Fundoplication, which is done laparoscopically, so they had to move the tube over about 1½ inches, again. So now I have two scars and a current g-tube button that form a triangle. I joke calling it my personalized medical-style version a "mi vita Loca" tattoo.
I have the same internal feed pump as well but I use the 1,200ml bags. Even more coincidental, I also use the KateFarms formula, but I use the Peptide 1.5 because I need the higher calories and more fat since people with cystic fibrosis don't absorb enough fat properly. I usually try to run it all throughout the daytime. I don't like sleeping with it on because I have to get up to go to the restroom too often and it's a hassle. I've been trying to get at least 1,800 kcal this way because I have a very on/off appetite. Plus, having a lot of gastrointestinal issues the last 5 years, liquids are easier to tolerate than real food. Sadly, at 30 years old and after two double lung transplants, I feel more unhealthy (gut/body wise) than I was in high school; weighing between 80-85lb now, compared to 120lb 13 years ago, but with failing lungs then.
great to see you're doing well, Lauren!
Thanks for your video. I'm in process of possibly getting a NJ tube.
I had an NJ for 4 months, then I was starved for 7 months. I had an NG for two weeks, but didn't tolerate it. I have now had an NJ for over a year now. I finally met with a surgeon so hopefully I will get a GJ soon! I actually had an ND for 2 or 3 days. I went to the ER bc my NJ was clogged, and they didn't have a tube that was long enough to reach my jejunum. I didn't tolerate it very well, but it was pretty much just a weekend
I have hyper POTS and EDS too and was recently diagnosed with MALS! I’m having so much pain with eating and am most likely not getting enough nutrition so am thinking about feeding tubes and this video was super helpful! I’m really curious at what point a feeding tube should be considered and when you got yours?
Thanks for sharing
I like your spirit.. keep it up.. 😉
Hello fellow Tubie. I enjoyed this video because it provided very clear and accurate information. :) Very nice stuff! I have G-tube/button. Question for you, how long have you had your tube? Also, how much longer will you need your tube?
I have a mini button Feedingtube for almost 19 year in April I never had Nasel tube
Hi Lauren. One more question: do you replace your G-tube by yourself?
i have a gtube will have one forever
i have a gtube will have it forever also have Chronic illness
Hey! I’m in a huge flare and unable to get more than 300-500 calories of nutrition in and doesn’t always stay. What should I do or how to advocate to my drs I need some sort of intervention cuz I feel malnurished and lost lots of weight due to being like this for a month. If you don’t feel comfortable answering you don’t have too!
have you been tested for MALS, the symptoms between MALS and a lot of other GI disorders are very very similar, people with our GI symptoms are usually labeled as gastroperisis then GES shows normal motility and then told IBS, but its worth a look bc it can takes away your abiloty to eat or drink and since they dont know whats wrong with your stomach, you moght want to research this and see if your symptoms line up.
i haven’t been tested but i have looked into it a bit and hopefully can get a gi doc to test me for it soon!
I am wondering what MALS is? I too am searching for answers to undiagnosed GI issues.
@@laurenboh I got tested for it in august and i tested negative, but i have also been tested for everything else possible, so we are going to send my scans to dr. hsu in conneticuit, becasue he looks at scans and reviews if they are really negative or not, bc because of how rare MALS is, a lot of radioligist dont really know how to read for that properly, so its a big possiblity they will still say its not that even when it is
@@maryrorick6129 MALS is called median arcuate ligament syndrome. MALS is a condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area (celiac plexus). it causes symptoms like abdominal pain after eating, nausea, vomiting, and weight loss and more. its super rare, so if you are getting tested, make sure you find someone who knows their stuff, just to make sure they dont miss it on the scans. but its probably worth looking into. MALS really isnt that rare, its just rarely diagnosed, so its a pretty decent probitlity that this may be it. ist worth researching and looking into
@@mattiesawyers4043 interesting. Thank you. I have had SMA syndrome before (after my first transplant) because of sudden weight loss. The morphine they overdosed me on also triggered boughts of gasroperesis. I wonder if MALS could be triggered by an episode of gasroperesis or SMA Syndrome, or any other surgeries in the abdominal area.