I’m so sorry for the loss of your grandfather. Sending prayers and hugs to you and your family. ❤️

Everyone pray for this gorgeous , funny and courageous girl. PLLLEASSEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE

Babe I’m so sorry you have to go through all this I completely understand. I know it’s so frustrating having to go under general but trust me sometimes it’s better. I’ve had horrible experiences with conscious sedation. I feel people like us that have these kind of unusual diagnosis’s don’t do well with that kind of sedation , personally I feel like I don’t absorb it correctly. If you’ve had it before with no issues and nothing but a good experience then definitely disregard my story⤵️ ❤️❤️❤️ I went into interventional radiology just to see if my port (had for 4 years) had flipped, and they literally decided to surgically try and flip it back (without even telling me). I felt everything. I was completely awake no relaxed type of feeling or anything. He cussed the whole time because my port was sewn into my chest wall (to prevent it from flipping) the numbing he gave me didn’t work and I felt him make multiple incisions. I was in so much pain when I got out and the nurse told my mom “well if you feel like you’re in pain you can take her to the ER” 🙄 .....the dang thing flipped in 4 days and got infected. So frustrating.

Stay strong Hannah. 🥰 You inspire me to keep going and so will you.

I keep thinking something has got to go smoothly and yet nothing does☹ I dont know why you are having to go through all of this but I am praying and asking God to give you strength and peace. You are such a sweet girl and I am glad that you are finally talking to someone who can hopefully help you with all that you have gone and are going through. Also there aint no shame in letting your mama help you out with some of these doctor calls to alleviate some stress and anxiety. I really hope things start to turn around for you. You really deserve a break! Praying for a miracle filled Christmas holiday and a much happier New Year!!!!

Hannah I’m so sorry you are going through this. I’m glad your mom is going to call for you, that’s got to be a huge weight lifted off. Thank you for being raw and honest, I have EDS as well and while I would never wish this on anyone, it is nice to know I’m not all alone in the world with unhelpful doctors who tell you to go to the ER. I know I can go to the ER I just got out of the hospital!! So frustrating. I will say some prayers for you that your doctors get their rears in gear and come up with a solution that works perfectly for you and your body.

I totally hear you about anxiety and depression making medical issues 3x’s worse to handle . Hugs to you. You not alone❤️

@marie-joseelauziere9776

3 жыл бұрын

All anxiety are bad even the good one like Christmas visit coming...it’s good but brings anxiety and increase Heath problems.

So much love for you, Hannah. I am so sorry you have had to go through this. Love to your family, too.

I hope and pray that you start having better health soon huni. I’m so sorry about the loss of your grandpa. I pray that 2021 is your year!

Prayers 🙏🏽❤ and so sorry for your loss

We love you Hannah, please do not give up we enjoy your content, bless you !

hi hannah! i’m new to the channel and i just wanted to tell you how much your vlogs mean to me-going through crazy health stuff can feel so isolating, but your videos help me feel so seen and know i’m not alone ❤️

Hi Hannah! I am a fellow zebra and completely get where you r coming from! When you are so depleted it’s even harder to deal with setbacks. I’m cheering for you

So sorry Hannah for your loss thinking of you. Oh boy you’re going through the ringer! I’ve flipped 2 peg-j tubes so far in 8 months.. the j arm was replaced once and the last time I had the whole lot replaced the G for draining & the J for feed, fluids & meds.. it’s always awake with Endoscopy and not great as I aspirated last tube change. sending love from the UK 🇬🇧 😘😍♥️ ps. If you pop something blue coloured like food colouring, gatoraid down the J portion of the peg-j tube and aspirate from the G portion of the tube and it’s got the blue colour to it your tube is 💯 flipped. I can tell by my symptoms also I end up vomiting feed put down my J tube. But if I hadn’t vomited and needed to check I’d use the blue coloured liquids. Mines clipped but it doesn’t stop it flipping unfortunately big hugs 🤗 ♥️♥️pps. I’m super behind with videos etc as been In Hospital myself 21/12 to 20/1 xx

I just got a gj tube put in. I love watching your videos Hannah. They make me feel less alone and my family thinks I'm crazy for getting a tube. I'm not a puker but have debilitating nausea and was only getting 300 calories a day from Starbucks drinks. Hoping mine doesn't flip. Wishing you the best and I hope you post more updates!

Hey, Hannah missed your videos. Sorry, you been thru so much with you tubes. And real sorry about your Grandpa passing away. Praying for you hoping you get your tubes will work and that your emotions and mental health be much-much better so, you can get some relief. This run around is too much for any person to endure. I wished your doctor's would listen to you and do something different than they normally do. Hang in there Hannah I'm praying things go well for you soon. Keep your hope up and try stay positive if, you can. Say, "Hello" to your mom for me. Take it easy and stay positive my friend. Good luck with everything!!!😒🤔😟💜💜💜💜💜

Awe im so sorry this is happening to you... ilysm! Stay bright and dont give up we love u!

I love you so very much. I am sorry for your loss and that you are still dealing with tube issues!!! Ugh! Have you thought of going somewhere else to see if they are different and can actually get the tubeto work? I know it would be the last thing you'd want to do. I really hope it gets figured out. I know too well what it is like to feel sick all the time. I got sick while on the toilet in a family dollar bathroom i was very thankful for the trash can and the very nice lady I told about it. I was embarrassed and felt bad.... She was like don't worry about it at least you told me you'd be surprised at how many don't. Which is terrible. It makes it easier I think when people understand... Keep fighting I am rooting for you. 💜

So sorry for the loss of your grandfather and the struggle you are going through. Just lost my grandfather Friday. Traveled from CO to OH to be with him but ended up getting sepsis and stuck in hospital in ICU on pressors... Will be interesting figuring out how we'll transition to going home...

Hi Hannah. You've been through so much grief n your medical issues kinda hold you back. Im glad your mom is there to help you, even though you're an adult it's nice to have her with medical knowledge be on your side. I feel your frustration n your sadness. Im keeping you in my thoughts n prayers that the drs can do something different so you don't have to keep repeating these surgeries over n over. Take care ❤

I’m sorry for your loss. And i hope they figure this stuff out because I hate medical and hospital circles and loops... prayers

I appreciate watching your videos regarding feeding tube situations my daughter is 19 has a gtube button and I worry all the time cause she is nonverbal and she can not tell me when anything is wrong. Prayers up and hope things get better!!

Good to see you again Hannah you're awesome

I'm in a feeding tube group and alot of us who have had our GJ flip have switched to a GJET Button it has a weight on it and alot of people swear by the GJET Button. I will be getting my GJET Button in a couple weeks . It's not just the weight on it but alot of the feeding tube people swear by it they say its got anti coiling technology. Not sure how or why but just a thought . Im praying for you . Just thought I'd mention it so you could look into it . By the way they require me to be sedated as well . Not full blown Anastasia but twilight sedation . I wholeheartedly understand what you're going through. I have horrible anxiety and depression due to the medical trauma I've been through. Including 9 major surgeries 2 pseudo obstructions and sepsis. I also have 2 kids that I had before everything crashed ! They also have the same diseases as me . Everyday is a struggle ! I also am trying my best to wean off my ivs I get 3 liters a day . Girl I'm praying for you so BIG ! I'm the founder of Blankeys of Love Ministries and we have a special something coming your way sweet warrior! You're in my thoughts and prayers. girl!

@SimplyHannah98

3 жыл бұрын

Thank you so much for this!! Will definitely look into it. So sorry you're going through similar things 😭💗

I’m sorry for your loss I hear you girl it’s been a rough year I used to have so much problems with my J-tube and now they switched me to a GJ and it’s so much better hope you will better soon

sorry about your grandfather, it's never a good time for such a loss, but there is so much going on right now.. .big hug. Also, hang in there. I admit I was happy there was no traveling for the holidays and online shopping only. BUT.. my wish for you is just for SOMETHING to work and for you to catch a break of just being YOU and healing and not being anxious about the next thing coming. You deserve a LONG time of just being You and not being the patient (especially in the eyes of the doctors). I'm glad your mom is helping, as when you feel overwhelmed, it's good to have someone on your team that is totally on "your side", to take just some of the burden of trying to get everyone on the same page. Also, remember, if anyone is allowed to have anxiety and such, it's YOU. I know I sort of lost it a bit, just, frustrated at zoom calls with doctors and pain. It's fine to NOT BE CALM, and just let some of. that frustration out. YOU ARE DOING SO WELL, taking it day by day.

Really hope u get the tubes sorted soon

Hi hannah! First Hope you are doing well! Stay safe! Love your video Sorry you are not feeling well. Sending hearts to you❤️❤️ And virtual hugs too.

I love you Hannah ! Keep your head up you are a beautiful woman full of dreams ! Make them come true:)

So sorry for your loss.

Running Gatorade or drip drop sounds like an awesome idea. Just make sure that if your tube is not running anything you have it flushed with plain water so that it doesn’t get clogged (you probably know this though)! I hope everything gets more manageable for you!

I’ve been shopping from the comfort of my couch too, so nice lol. Sending hugs to you Hannah 💕💕

@SimplyHannah98

3 жыл бұрын

Love it hahahah! Thank you so much 💗

@tubgold

3 жыл бұрын

@@SimplyHannah98 I found your channel from a AD

Hi Hannah lovely to see you💙🇮🇹

Feel better I hope they can get your nutrition sorted out.

Hang in there Hannah❤🧡💛💚💙💜

So sorry about your grandpa. MayGod Bless you . I understand the not sleeping part I’m watching this at 11:22. Last night I was up till 4 o’clock

I have a straight J and separate g tube!! I feel ur pain. Kinks, flipping 11 tube changes, pain, failing feeds and I was put on tpn on month 5 of tpn.. I try tube feeds but it's not working.. 6 autoimmune disorders, mast cell, pots classical eds and mote.. ugh praying for u Hannah

I feel so sorry for you. Every video is something new you have to struggle with and it feels like its not changing for you, like no one know what they are actually working on to get you better. I just hope so much that soon you will be better and finally start to feel better.

We can do hard things. Life is unfair. But we can do hard things, overcome them a be happy again. I am telling this to myself everyday. Love you!

It’s crazy how much we have to self advocate when we just don’t have that energy to expend or ability when you are so sick. Ugh

Sending love and prayers 💪🏽💪🏽💗❤️❤️❤️

Our "Mum" is one & only

Hi Hannah Banana 🍌 it’s Julia! I’m here for you and you got this! ❤️✝️🔯💟☮️

Massive hugs beautiful girl 💕💜💕💜

I am glad that i'm healthy, i'm sorry for you

Also did know the mascot for the disease is a sloth

Lard of mercy Hannah 🤭😮🇬🇧

My daughter always needs general anesthesia. Be grateful as they can place a breathing tube . Since you have difficulty with aspiration, its the answer .

@tobidauenhauer7125

3 жыл бұрын

Its hard what you are going through. My daughter is much the same . Flipping keeps happening along with knots . Its so frustrating

I have tubes in my ear cause I couldn’t hear but I am ok now Like the video to make her feel better

I am so sorry, I do immunotherapy for my allergies which is so hard but is not as hard as this at all!

I certainly understand your frustration and depression, Hannah. I don't understand why these doctors and nurses aren't more understanding and concerned too. Hopefully, your Mom can read them the riot act on Monday. There HAS to be a reason why these tubes are going haywire (defective?). Hugs and prayers.

So sorry for the loss of your Grandpa Nice to see a blog from you! SEASONS GREETINGS

Hi my mom has gastroperesest tooo 😢

Just saw the inside edition video When u said ur gonna eat a pudding a tear literallty rolled down🙁🙁

That’s so odd they are requiring you to have general. I have a peg j tube, and I get them placed at Cleveland clinic (which I think is your hospital) and they do it with no drugs at all for me. Maybe it’s a case by case type thing?

@SimplyHannah98

3 жыл бұрын

Yeah it is! Do you get yours replaced in interventional radiology or general surgery? I think that might have something to do with it

Oh my god. First of all, I don’t think you were being negative. I think your feelings were strong but absolutely valid. The situation you’re in is horrible and the doctors are handling it abhorrently. My jaw was dropping at how they have just been shrugging their shoulders about this, passing the buck (go to the ER for a non-emergency surgery? That’s just absurd. They needed to take responsibility and get you scheduled not just send you off to the ER.) It’s a mess and their lack of urgency is very concerning considering you’re not getting nutrition. I’m so upset for you. And to have lost your grandpa on top of it all is very heartbreaking. You can’t heal from your stroke or grieve for your grandfather if you can’t get nutrition. So you’re not being negative, you’re sharing your situation and your real, honest, valid feelings about it. As a mom, I’d be livid and if my kids were grown, I’d still be ready and willing to call up their doctors too and demand answers and action. It’s ok to need someone to advocate for you right now. Gentle hugs and I hope your next update is better. TLDR: your feelings are valid and I want to mom for you and yell at your doctors. 😒

6:01 My condolences to you. I find it inconceivable that a hospital would not take sufficient precautions to prevent more people from getting COVID-19.

Hi Hannah so sorry to hear about your tube. Maybe a new surgeon is needed? Wishing you thg he best..

I will be praying for you Hannah, for Elohim YHWH nothing is impossible, you are not alone.

Good grief ! You’ve been through the wringer! We used a regular g-tube tube in my j tube stoma and it worked fabulous! It has a balloon on the end we filled half way , so there was nothing to flip or fall out. Have you considered an evaluation and treatment in another state ? The craziness they have put you through is absolutely ridiculous! I’msure you would probably qualify for the intestinal rehab clinic here. I’ve been coming to the same hospital/for over 30yrs and have NEVER experienced half of what you have! For starters all the doctors and specialist come in to see you at the same time so everyone is on the same page! That means there simply aren’t issues where you have to call more than doctor to get something taken care of! A real person answers the phone every time you call and they rarely take more than a half an hour to get back to you. Four people from out of state, they also come up with a game plan describing the rules your current doctors have so that you are left scratching your head in between visits wondering who you should call or be taken care of in a timely manner! I’m sending hugs, healing thoughts, and prayers your way! Hang in there Sweetie!

who else came here from inside out | | | V

@PoffieCat

3 жыл бұрын

Like begger

I don’t understand how/why every tube flips?

@SimplyHannah98

3 жыл бұрын

Honestly I don't either. I've had 2 different doctors say it's my anatomy though 😩

So sorry but you should meet Amy lee fisher hopefully you get well soon

Who's also here from inside edition

@MOJORAPSCALLION

3 жыл бұрын

What’s that? X

Hey your that girl from inside edition

are you able to work with your condition or are you too ill and exhausted most of the time?

@SimplyHannah98

3 жыл бұрын

Up until July, I had been able to work a part-time job! In August I had a stroke though which flared up all of my chronic illnesses and since then I can't get out of bed most of the time.

So sorry hopefully better soon. That be hard. Hope fixed. This not good. You cant keep lossing weight

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