I have tons of those Vibedration backpacks too! I LOVE them for my tube supplies
@cowens0176 жыл бұрын
Talk to your doctor if you're still getting physically hungry even with your feeds. I'm on my 9th feeding tube for SMAS, and when I'm getting enough through my tube, I don't feel hungry even though they're J feeds and bypass my stomach. I completely get the mental hunger though. I still slip up and eat and regret it every single time, but sometimes I just HAVE to eat. Also if you need to go with a J tube in the future, once you're healed, the surgical tubes are much more comfortable than nasal tubes!
@SimplyHannah986 жыл бұрын
I totally understand exactly what you're saying. Like I know I can't possibly be starving to death, but that's literally what it feels like! Thank you so much!!
@amberyingling8406 жыл бұрын
I hope the new formula helps! I don't tolerate dairy or soy so my nutritionist and I were excited when Kate Farms came out with an elelmantal formula I could try. Have been using it for about a year now and to date have tolerated it the best. Bummer is I'm having hypoglycemic trouble now and endocrinologist believes it's the formula, so back to the drawing board... I hope you have better luck with your new formula!
@SimplyHannah986 жыл бұрын
Thank you!!
@yogabirds6 жыл бұрын
Hugs and healing thoughts coming your way! I know it seems torturous, but be grateful you can feel hunger! I get thirsty, but don't even remember what hungry feels like. By the time I no longer felt hungry, my intestines had failed. On food, you need to stick with things that can easily be drained from the g part of your tube. Blue bunny makes several frozen yogurts that I tolerate better than ice cream. Don't eat more than a tablespoon or so at a time. If you get nauseated stand over the toilet and open the gtube. Most of the time, the built up pressure in your stomach is enough to drain it. Otherwise, put a syringe on it and pull out what is in your stomach. There are several snack foods that literally dissolve in your mouth, so they help fill the need to eat. Cheetos makes something called puffcorn in cheese and butter flavor. It's $2/bag and tastes like popcorn. They make fruit flavored baby snacks called puffs that are the same as puffcorn, but fruit flavored. Bone broth with boiled to death carrots and potatoes are also pretty easy on the stomach. Baby food pears or applesauce good but only get the 1st foods to start out. Popsicles and hard candy as well as jello are okay sometimes. You need to start ridiculously small amounts of food to re acclimate your system.That means like no more than 1 tsp/hour. If you get sick skip an hour and try again. If it goes okay, then take another teaspoon each hour. No real food right now, start with the choices above. Hang in there! Stand proud with your jtube for passport photos and when you no longer have the jtube, you can look back and see how far you've come!
@SimplyHannah986 жыл бұрын
Thank you so much!! Yes absolutely!
@yogabirds6 жыл бұрын
You are very welcome!
@tammyroberts77462 жыл бұрын
❤️❤️❤️
@sunglassesgirl6 жыл бұрын
I realize this might sound a tiny bit crazy, BUT... if you're _still_ feeling self-conscious about having your J-tube showing in your passport photo you _might_ be able to camouflage it by taping over the entire tube, including the green connector (?) piece, with 1/2 inch or 1 inch wide tan-colored paper tape, including the green connector (?) piece, BEFORE doing your make-up (and then doing you make-up on top of the paper tape). Of course, you'll know what was under the tape five years from now, when (hopefully) you're feeling much better, but the random person checking your passport will just think the machine that printed your passport messed-up. There are ignorant people that will stare at things that look different (and NEVER ask questions... because that's just too difficult for them...). No one will ever say a word to you about you passport photo, regardless of how you decide to handle your passport photo situation. =)
@kellyhinde40486 жыл бұрын
Great vlog hunny hope you feel better soon hunny xx
@fernandojacobs24945 жыл бұрын
working keeps you alive
@aritzaponce46715 жыл бұрын
Stay strong Hannah we luv you😘
@reillyalbertson80575 жыл бұрын
Hugs and prayers for you Hannah
@kauigirl8084 жыл бұрын
Curious if it helped the diarrhea by switching. My dad has this issue. 😩😩
@SimplyHannah984 жыл бұрын
It did help my diarrhea when I switched!
@bevbailie45446 жыл бұрын
What about getting your passport done with your tube and ask if when your tube is out you can update your picture.
@SimplyHannah986 жыл бұрын
That was something I was going to do, but I would have to get a new passport and they're kind of expensive!
@kimkrewson79546 жыл бұрын
Great video. How do you stay hydrated or when your thirsty? I'll pray for your recovery.
@SimplyHannah986 жыл бұрын
Thank you so much!! Hope you're doing well! Honestly it's SO hard. Drinking a ton makes me sick but one of the meds I'm on makes me super thirsty. I still haven't found that balance though
@ladygreat29316 жыл бұрын
Hi the beautiful Hannah, glad to see you doing well. 😙😙
@kyraking65176 жыл бұрын
have you tried going back to drinking pecan butter ensure that might help till the time is right some people drink supplement drinks when they are hungry or kate farms
@SimplyHannah986 жыл бұрын
Yes and they're too hard on my stomach and I throw it up. Ensure clear is also too hard. I can't use kate farms because I'm anaphylactic to multiple ingredients in all of their drinks.
@spinstercatlady6 жыл бұрын
Sorry to hear that you've been having a rough go of it lately, sis :( So the reason for the tube is due to the severe sickness from the surgery right? Has your doc given you any idea of how long it generally takes most people in your age group to get back to eating regularly? I'm sure it must feel quite discouraging to have surgery to fix something and end up feeling even worse during recovery. Prayers for your continuing recovery! And hey, you have an awesome trip/cruise to be looking forward to :D Disney cruise?
@SimplyHannah986 жыл бұрын
So originally yes, it was to help my stomach heal from surgery but now we're all thinking that I'll need it long term to help with the gastroparesis. When I saw my gastroenterologist, he said we should see even a little bit of improvement from the surgery by now. He doesn't want us to lose hope, but he said it's not as promising as we thought if that makes sense. I was talking to one of the nurses who works with my surgeon and GI and she was saying either people bounce back really quick from surgery or end up with a permanent tube and you typically know right off the bat. I'm sorry if this makes so sense hahahaha and YES!!! If I need a permanent J tube, I know it's Gods plan and then I don't have to worry about having this nose hose on our cruise 😉😂
@Annie-A6 жыл бұрын
Eeek I'm sorry that you have to take your photo with the tube in. :( My photo which I'll have until 2023 is pretty atrocious, but the good news is that you don't have to use it much. It isn't like your state ID which you use all the time. I don't know if that makes you feel any better. I did see on instagram that you got the Peptamen formula, which I am relieved about. The first one was giving you trouble right? I hope it works better for you. You do look like you have more energy than before. I hope this is the case. Have a good day!
@SimplyHannah986 жыл бұрын
True hahahah! I get a new drivers license next year and I refuse to have this tube in that long lol Yes!!! I am feeling a bit better and long as I don't eat.
@wendymurray46036 жыл бұрын
I don't think not eating for a couple of days will reverse your problem you may need longer time. Hopefully your need feed will help you in many ways. You intestines are very sensitive to food ingredients make list of what stays down what does not might help you out even if it's two food items left you might as well stick to them. Yes a adult passport last 10 yrs a child lasts 5 yrs trouble is you can't put it in take where ever you travel you can phone them and ask what's the best thing to do regarding your tube. Plus I don't know if new rules apply to you as your a adult passport holder fracking with your medical items just check to be on the safe side ok. You take care 😊👍🏾
@SimplyHannah986 жыл бұрын
My doctor wants me to try and slowly eat more and more but it's not working. I definitely need more time but it's so mentally draining! I want to eat sooo bad. Thanks so much!!
@wendymurray46036 жыл бұрын
@@SimplyHannah98 Yes it's mentally draining but you need to realise you may have to face the fact that you can't eat any food and rely on tube feed which is not what you want but you have to keep that in mind. Try making a list when you see the doctor next you can show him. It's trial and error or you might need to chew good for longer before you swallow. Try normal organic and gluten free split them into food groups that might give you a clue. It won't be easy but you have to give ago so you know in the end what triggers you off if you get me. It's alot to take on but you doing it for a very good reason. Oh test cooking plus salad dressings. You will find out what gives you so much trouble it takes time anything medical takes time. Big hugs hope I've helped a little bit hang in there ok. 😘👍🏾🙏
@EstherFisher-k8m9 ай бұрын
What it feels like having a feeding tube I may have to get a feeding tube I no soon I am narvist
@kenmiller11455 жыл бұрын
Did you get genitivaly tested do eds
@fernandojacobs24945 жыл бұрын
you should try coca leafs
@alyssawssinging40396 жыл бұрын
Hey Hannah
@SimplyHannah986 жыл бұрын
Hey girly!
@nktigger996 жыл бұрын
Believe me it won’t matter with your passport photo....people can change a LOT in 10 years!
@SimplyHannah986 жыл бұрын
Okay, good! Thank makes me feel a lot better, thanks so much!!!!!!! 💗
@tammyroberts77462 жыл бұрын
Hey Hanna I have some serious conditions also I will like to know more about you and I will love to share mines with you also ❤️ bless us who have human conditions we are still precious 🙏🏾❤️