what it is *actually* like to have a feeding tube//how gastroparesis put me in the hospital
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- čas přidán 5. 09. 2024
- Welcome to my feeding tube story. This video highlights one of the worst parts of my gastroparesis story. I was malnourished, my body was starving to death and I had no energy left. If I didn't go to the hospital, I don't even want to know what would have happened to me.
In this video, I talk about what lead up to me ending up in the hospital and why I had to get a nasojejunal/nasoduodenal feeding tube. I share my experience with the feeding tube and the not so fun realities that come along with having a feeding tube. I also talk about my low blood sugar scares which was completely unexpected for me and a frightening situation to experience.
With this video, I want to bring awareness to how dangerous GI disorders, or any disorder that affects your ability to intake adequate nutrition (not just gastroparesis) can be. Those who have a disorder like this, know how serious these conditions can be, but those who don't have them, have no way of knowing unless they are educated about it. I also want to raise awareness about feeding tubes and show people the realities of having one. Having one is not even remotely easy, but the people who have them often make them look like it.
If you are reading this and you have a feeding tube or a disorder that impacts your ability to get nutrition, I just want to say that you are exceptionally strong and to keep fighting, and to continue to try your best to nourish your body the best way you can.
If you are reading this and don't have a feeding tube or a disorder that impacts your ability to get nutrition, I just want to say thank you for watching this and educating yourself on what other people are going through. People like you are what will make this world a more empathetic and compassionate place.
I hope you enjoyed the video and it helped you in some way. Please comment if you have any questions or just anything you want to say, I would love to respond.
If you are interested on following my life, subscribe for new videos every Sunday, Wednesday and Friday about food, fashion, lifestyle, and occasionally gastroparesis. I would absolutely love to have you.
Remember to spread kindness and joy.
My Gastroparesis Story Videos:
✩Part 1: • my gastroparesis story...
✩Part 2: • my gastroparesis story...
✩Part 3: • my gastroparesis story...
My Favorite GP Products:
✩The bed wedge I used (I tried and returned a couple but this one was the most comfortable): amzn.to/30W2ruC
✩Ginger chews: amzn.to/2WP5AZx
✩Sea bands: amzn.to/2y0q610
✩Ginger gum: amzn.to/2T0R6Vc
✩Heating pad: amzn.to/35XnvRR
✩UpSpring tummy settle drops: amzn.to/2WrzPH5
✩Essential oil: amzn.to/3fB9UEe
(these are affiliate links)
About Supplemental Nutrition:
✩G/J tubes: www.g-pact.org...
✩NG/NJ tubes: www.g-pact.org...
✩Feeding tube care: www.g-pact.org...
✩Gadgets and Tips for Feeding tubes: www.g-pact.org...
✩Intravenous nutrition: www.g-pact.org...
Gastroparesis Patient Association for Cures and Treatments, Inc. (this website has a lot of good information about all things related to gastroparesis)
✩www.g-pact.org/
✩Kate Farm's website: www.katefarms....
✩My instagram: kenna.krueger
As mentioned in this video, I talked about how important it is to educate yourself on what other people are going through in order to find ways to help them and care for them. Here is an excellent resource that someone put a lot of time into that you can use to help further educate yourself on the black lives matter movement.
✩blacklivesmatt...
I just had an NJ tube placed 3 weeks ago, and things have been kinda crazy since then. Already had the first one replaced due to clogging but things have went ok with this on. I have suspected Gastroparesis. Hearing your feeding tube story has been nice, because it’s nice knowing we are really all in this together.
oh my I am so sorry to hear that it already got clogged! I honestly don’t know how I got so lucky with mine not clogging. I am so happy to hear that my story was able to help! I wanted to share with others just like you said, to show that we are all in this together, and that other people who don’t have to go through this can understand a little better what we have to go through as well.
Hi Kenna ❤❤ I can not believe that almost everything is deja vu for me.. I had NJ tube for 6 months and it was the worst experience... Vomited 9-11 times bile per day... two surgeries further and not better.. but I would take surgery always instead of nasal feeding tube. Never ever.. I wish you and everyone with chronic illness all the best and happiness❤❤ thank you for your youtube channel and just for your existence
I have GI issues and I also work in healthcare. I work with a client who has a J tube and I have been so interested in learning more about lived experiences with feeding tubes-not only the process and reasoning of acquiring one but how isolating it can be socially. Thank you for sharing your story!
I really appreciate you sharing so much about your experience! It gives me a lot of peace with having an upcoming POP procedure and not knowing anyone who has been through the same thing. I've had gastroparesis for 7 years and thankfully haven't had to have a feeding tube, but I really relate to your experiences. I've lost 40-50 pounds in the past year and have passed out from pain/malnutrition on multiple occasions. It is difficult to be a young, otherwise healthy college student yet have to deal with a condition that no one can see or really understand. It's crazy because I had so much trouble even finding a GI doctor who was willing to treat me and even my doctors now (GP specialists) are surprised to be treating someone so young with no other obvious cause for such a condition. When I was first diagnosed I basically had to teach my ER doctors about GP, but I believe awareness for it has gotten slightly better in the last 7 years I'm glad you're raising awareness for this! I really enjoy your channel and hope it continues to grow!
Thank you so so much for watching! It can be scary and isolating to not have people who know what you are experiencing, especially the people that we think should know. You are so strong for fighting this condition for 7 years. Keep going and I hope you find your version of a happy ending whatever that may be :) I also experienced this condition while going through college and know just how hard that can be so just continue to remind yourself how strong you are. That so crazy that you had to explain what it was to doctors in the past but I am glad more people and more doctors are becoming aware of the condition because then hopefully it will lead to better treatments! Thank you for your support and I really hope your surgery goes well for you!
Kenna K. Thank you!
@@mariahteague5083 Sorry you're having to go through all of that. Ehlers Danlos syndrome can cause gastroparesis and other issues, which can show up at a young age. Have they screened you for that? I have hypermobile type Ehlers Danlos syndrome, and have digestive motility issues and quite a few other issues from it.
This is informative thank you. I’m going through GI problems and waiting for some sort of diagnosis. Thank you for being so transparent and provide lots of info :) x
I’m so glad this video was able to help you and that I was able to provide enough information! I am so sorry you are going through GI problems but I hope you can get a diagnosis soon so you can start treating it.
I have a long term G/J tube for my gastroparesis. It’s given me my life back, but some days it gets really annoying. I hope you are doing better now!
You are a champ! I am so happy that the feeding tube is helping you and I hope you continue to thrive!☺️
My daughter was diagnosed with Gastroparesis and has to live with a feeding tube.. Shes only 2 years old. Awareness please. Your amazing and thank you!!
So sorry your going through this I just came across your comment , how's your daughter now. 🙏 my prayers are with your daughter
thanks for sharing this! i have gp but last few months have gotten worse, horrible nausea, regurgitation, stomach pain, i’m down to 400 calories a day on average and i’ve lost 5 pounds this week so my doctor is talking about a tube but i’m really trying to avoid
you’re welcome! Awww no I am so sorry to hear about all of that, this disease can be so rough. Tubes can be scary and uncomfortable and not ideal but if you can’t bring in enough nutrition, you will definitely need one! It saved my life because i wasn’t able sustain myself without one. But remember it can also be temporary and not a forever thing. Sometimes it is and sometimes it isn’t but whatever the situation is you just have to make sure you are fueling your body the best you can. I wish you all the best and hope you are able to find some relief soon!
Yes…. awareness! There are so many reasons why people need feeding tubes. It sounds simple but it’s really a lot to go through. My personal experience with a feeding tube was due to pancreatitis. And if you know anything about that, it’s extremely painful and the symptoms were like yours but with horrible pain in the upper stomach. So dealing with that and then the feeding tube on top of that was the worst. Well I know not the worst, but for me at that time it felt like the end of the world.
I've been eating less then 300 calories a day ( most of the time around 200 or 100 , i went even 48 hours without food and i'm loosing weight pretty fast) for 3 months now because of parosmia this video is motivating me to go get checked. Thank you ♡
Aww no so sorry you are going through this. And yes please go get checked out, nutrition is soooo important. I am wishing you the best💚
I've recently been diagnosed with messenteric panniculitus (basically inflammation of the abdominal wall, they think in my case it is auto-immune). Lots of similar symptoms to gastroparesis (which is how I found your videos). Had barely been eating for about 2 months (like you, was basically eating once a day just to get some nutrition). Then it got to the point I felt like I couldn't eat at all (and like you, just wasn't hungry, felt nauseas etc). Was still keeping down fluids so figured I was ok. I was not ok. Ended up with electrolytes so out of whack that I couldn't walk and ended up in hospital. So just to reiterate what you said: Don't delay getting medical care! (Forunately in my case I was ok after getting dextrose / IV fluids etc).
Oh my goodness it sounds like you have been through so much as well I am so sorry! That period of time where I was only eating once a day was so rough on my body I can’t believe I went that long delaying my medical care. I am happy that you were okay getting dextrose and fluids and I hope all is okay with you now!
I’m getting a feeding tube in a week and after watching this I’m even more scared than I was 😢
I have an NJ tube. I am also blind. I love your videos. I have gastroparesis as well.
Wow you are so strong, keep fighting!!
Kenya Carter u can use apps that u talk into and it types for you ! You can also get apps that can read for you !
Thanks sooo much for the heart !
I’m just diagnosed recently and watching this because I might need a tube soon. I’ve been given meds when it was just “suspected GP” (my diagnostic place takes months to book appointments) and nothing has helped. I feel the way you were saying, exhausted and blanking out on things and so nauseous I have barely been eating. I have an appointment Monday (8/21) and I’m pretty scared
Neurofeedback and biofeedback might be able to help if damage to the autonomic nervous system is in the brain, which is usually what happens. I would also recommend the Comra laser therapy to heal any tissue or nerve damage. If its due to diabetes you will have to control you blood sugars.
When I went to the ER for a low blood sugar that wasn’t coming up and vomiting (which I don’t vomit for anything) they didn’t want to take me because my blood sugar wasn’t low enough. My concern was how fast it was going down for no reason. I got the ER was never seen and I left…. Still dealing with all this now so I think I may have gastroparesis, I have nausea, acid reflux, and horrible bloating and stomach pains from being constipated.
Go back to the ER!!
Hypoglycaemiais very very common with gastroparesis I was born with gastroparesis and my blood sugar often drops even when I’m running my formula (Peptamen 1.2) some people don’t feel their lows until it’s extremely low and some people feel it early. For me I can tell my blood sugar is dropping very early on, I start to get nauseous (it’s hard because I’m always nauseous), I feel “weird” I don’t know how to describe it, my vision is shaking. I feel between 4.4-4.0mmol /L so that’s 80-72mg/dL, so your blood sugar was 36mg/dL so 2.0mmol/mg.
I have a nasal J tube on and off for 6 months and it was extremely painful I was on Prescription pain meds
Love you videos luv. I currently have an NG because I couldn’t eat because of Chronic anxiety which may sound like a weird reason but I’ve since started thinking I may have Gastroparesis. I’m in Australia and although our medical system is top notch my gastroenterologist whom I haven’t mentioned my thinking of GP but he did a gastroscopy and check my tummy out but all looked ok inside and he took biopsies and came back normal. He did a colonoscopy and I literally drank 3 litres of bowel prep, sorry guys TMI coming, but I literally shat water poop and flooded the hospital bed cause if came out while I was sleeping. Anyway even thought I could have drowned in my own poop as so much came out the Dr said he could only get a little way up my colon as I was impacted. I thought how on earth can I be impacted when I shat so much out. I feel nauseous so often which stops me from doing things, I’m like you and usually don’t vomit but do gag/dry heave. So I can feel sick out of nowhere which then I can’t eat, or like the other day I put the 200mls of formula in as a bolus feed, takes about 1/2hr but after it I felt like throwing up. I get tummy pain all the time, I have Chronic Fatigue Syndrome, POTS, I’ve had chronic daily headaches and migraines since I was 14 and I’m 45 now. I also have insulin resistance/pre diabetes. The reason I’ve had the NG in is because I was losing weight quickly cause I couldn’t eat during the day and anything I ate of a night must have got burnt off really fast. My bloods are basically ok, meaning some minor abnormalities but nothing crazy. I’ve had the tube for 2 months and need it for another 4 weeks. Oh yeah I get that full feeling after not eating heaps and I can go from a more normal/flatter belly one day to bloated the next. I have to say I have suffered an eating disorder throughout my life but it’s not active atm. What do you guys think? I don’t even know if Gastroparesis is something the specialists think of often here Down Under.
Thank you for all the info. Makes me realize I really don’t want one and I have to try harder to get the nutrients which you know are hard to do with this awful disease. I’m going to look now to see if you posted yet on the surgery. Would love to know what it was and did it help? How are you doing now? Is the surgery you had performed still helping you?
You’re welcome!! I was on the same boat as you where I thought it would be really nice to have one to get my nutrients (which it is obviously) but it also came with sooo many problems so now I always fight so much harder to get the nutrients I need! But if you also cannot get the nutrients you need, it is important to take that step and get one because it did save my life!
I did post the video about my GPOEM, it was a procedure where they went endoscopically to cut a portion of my pylorus. I touch on this so much more in my video but I am doing so much better and the surgery helped so much! I just have issues now with my colon because a test showed that is slow as well so I’m trying a new medication to see if I can get that under control but I don’t get nauseous and I have a much bigger appetite! I hope you find something that works for you!
Here is the link to the video about my surgery! czcams.com/video/iGo-2xmFsh0/video.html
Thank you so much for the info and link. I did watch it. It was good and I’m glad that helped you. Hope the meds work for your colon. Gastro issues are no joke. They are horrible to live with. I have not been eating too much and there’s a lot of different symptoms I’m dealing with. I did see my pcp and he’s running a massive panel. My gastro dr doesn’t believe in feeding tubes due to the complications and advised to eat more. It’s hard. No matter how much I try, I just can’t. And I get the puking thing, but mine is like a shyness puking, if that makes sense. I hate vomiting. And unfortunately Zofran doesn’t work any more. Thanks again for sharing your story. Hope you remain well and the other issues get under control! Take care.
Thank you so much! And no, they are no joke!! They affect every part of your body and are so difficult to endure. Don’t be afraid to seek a second opinion because so many doctors didn’t believe how serious I was and because of their lack of help that’s how I ended up in the hospital with a feeding tube. But the latest doctor I went to was the one who recommended the surgery for me and is helping my figure out new ways to manage my colon. Always fight for yourself and make sure you get the best care.
When zofran didn’t work for me I paired it with some natural remedies as well to try to help. Sometimes it worked, sometimes it didn’t, it honestly just depended on the day. I really hope you can get your GI issues under control and you are able to get enough nutrition!
Thanks. Me too. I think I’m going to seek a second opinion bc it’s not like my gastroparesis is going magically disappear. The other GI issues I can deal with (for now). I just want to be semi-normal again. I will look into herbal remedies to take with the Zofran. Hopefully they will work and at least I can then get the nausea under control. Seriously, more people need to be made aware of this disease. When ppl ask why I look sickly and too skinny, I tell them then they give me that “huh” look and ask what it is. My response: my stomach is paralyzed and doesn’t digest food like you. Then they seem to get it. Lol
That’s awesome to hear, fight for the care you deserve and just keep finding and researching different things that might help you!
Educating others and making people aware of this disorder is exactly why I made these videos and started my channel in the first place. This disease is so misunderstood and so many people have this condition that I just wanted to show people what others have to go through on a daily basis. The more attention that is brought to it, the more research may be done.
That’s an awesome way to explain it to people who don’t know, I would often just summarize it like that too! Keep fighting and I wish you all the best!
currently have one because i was malnourished however my stomach growls last meal i had was 2 days ago at 12:34 pm
I have to get a nose tube, I have Visceral Sensitivity.. its horrible, I can barely eat anything.
Hi I have a congenital heart condition and I’m really starting my appetite. My weight is ok at the moment. Well I’m actually overweight. I’m looking for some advice and reassurance as I think at some point I will need a feeding tube
Are occasion water leaks ok ?
Did you have a bridle on your tube? Why did you have it?
Yes I did! And at my hospital I guess it was just standard to put one on with the tube because they put it on right after the inserted the tube. I personally didn’t mind it because it felt more secure and I didn’t have to worry as much if i accidentally tugged on it a little bit because it stayed in place.
@@KennaKrueger Was the bridle placed on your tube to prevent you from pulling out your tube?
It wasn’t to necessarily prevent me from pulling it out myself because I personally wouldn’t do that but just to prevent really any displacement. It is super easy to accidentally pull or get the tube caught on something so the bridle just keeps it secure.
Can you taste the liquid through the tube?
Nope! It goes straight into my small intestine so I can’t taste it
@@KennaKrueger hopefully I won't have to get a feeding tube. I have cerebral palsy and dysphagia which means difficulty in swallowing. So I have a higher chance of getting a gtube. I love food! Did you try the ngtube? Were you able to taste that?
aww I hope you won’t have to either! It is so hard not being able to enjoy food like normal because I too love food and baking is one of my favorite things! And I had an NJ before and nope you can’t taste it at all if it goes through a tube.
my drs dont believe in gastroparesis and i have mals. nutcracker, pelvic congestion, maythurenrs and possible smas and tos so i have not been tested for gp and lost 22 lbs
Aww no I am so sorry you are going through all of that, it must be so incredibly hard. I hope you are able to get some proper treatment and symptom management soon
Do you take any meds for GP?
Not currently but I have taken multiple of the ones usually offered for Gastroparesis. Right now I’m just on a medication for my colon.
Thanks
You’re welcome!
I take Mestinon for my gastroparesis, and it's been the only thing that's worked for me. It's an old medication, but a new treatment option for gastroparesis and chronic constipation.
I take Reglan I have for over a year now and find it very helpful but it can have a lot of negative side effects