scoliosisstory A few Common Feeding Tube Terms
Flush - pushing water through the tube to clear meds, food, or formula to prevent clogging
Bolus Feed - a feed that is given like a meal, larger amount given in a shorter amount of time.. Continuous Feed - a tube feed that is slowly dripped in using a feeding pump
Vent/venting - letting air out of the stomach with a feeding tube
Intolerance - how a person reacts to tube feeds if they are uncomfortable during feeds..
Motility/Dysmotility - how food/liquids move through The GI tract️ Stoma - the tube site .. Where the tube goes inside the body.. {when my best friend first got her feeding tube I had to learn what all of these meant: so It was easier for her and I both to communicate about her feeding tube..👭} Educate yourself, you never know when your best friend or family member will end up with a feeding tube... They aren't an easy thing to deal with, but is a lot easier if you're educated on the subject... 👭
18h

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scoliosisstory Did you know over 300 conditions require feeding tubes? And over 500,000 people in the U.S. Alone rely on feeding tubes for nutrition? Just a couple of facts for #feedingtubeawarenessweek I am learning SO much about feeding tubes by making these edits and researching facts... By learning this information I can better understand what my best friend goes through... Feeding Tubes are not an easy thing.. But it is easier for her and I if we both have information on them... #feedingtube #awarenessiskey #beinformed #learn #pegtube #gp #gastroparesis #bestfriend #areYOUaware 2d
  •   staciejustin Oh my little scoli sister Maggie is 7 and got a feeding tube over Christmas. She has gained 3 pounds and they are so excited. Thanks for raising awareness. @scoliosisstory 2d

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scoliosisstory 2 hours of sleep My back is killing me.. It was really hard for me to fall asleep last night.. Fell asleep at 2am and woke up at 4am today is going to be a lonnnggg day... I'm in so much uncontrollable pain ... #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #chronicillness #chronicpain #exhausted #toomuchpain 2d

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scoliosisstory Today starts Feeding Tube Awareness week.. No I don't have a tube, I don't have stomach problems, but my person, my other half, my best friend does, have a tube.. She Does endure daily pain from her stomach problems and rare diseases... I want to change the way these issues are handled.. It is hard to sit by and watch your best friend endure so much.. I want to bring awareness to this issue... I'm going to bring awareness to this issue every day this week... And so, so much longer... I love a tubie #scoliosisstory #bestfriend #feedingtubeawarenessweek #feedingtube #gjtube #gp #gastroparesis #MALS #tubefed #raredisease #iloveatubie 3d

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scoliosisstory I love this so much! I would be nothing without my sister/best friend @no_fear_just_faith .. I honestly couldn't do this life without her... I am beyond appreciative for everything she does for me everyday... So I got my MRI done.. It revealed a couple of things, but nothing we didn't already know about.. So my next step is to put together all of my scans and medical history and start corresponding with the Mayo clinic in Arizona.. Hopefully they will have an idea as to how they can help me with pain.. #scoliosisstory #scoliosis #chiarimalformation #klippelfeilsyndrome #chronicillness #chronicpain #bestfriend #mayoclinic 6d

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scoliosisstory Dermatology and Dental appointment today.. Tomorrow I have an MRI scheduled, so that we can find me a new surgeon.. My pain is out of control, and I'm tired of hurting so much... Dermatology says I have Keratosis Pilaris
Chronic: can last for years or be lifelong This condition develops when the skin produces too much of a protein called keratin, which can block hair follicles and cause bumps to develop. The bumps are usually on the arms, thighs, cheeks, and buttocks. They're white, sometimes red, and typically don't hurt or itch. {typically don't, but mine hurt and itch.} Dentist said I need to get my wisdom teeth removed It will happen sometime in the next few weeks hopefully.. I hope you all are doing well #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #keratosispilaris #dermatology #dentist #wisdomteeth #MRI #chronicpain #chronicillness
1w

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scoliosisstory "Invisible Tears are the Hardest to Wipe Away.. " My back, head, neck, ears, are killin me today.. I took a lot of meds last night to make sure I could sleep in, I woke up earlier then I have in months and my pain meds still aren't working. hopefully we can get this all taken care of soon, I'm tired of this debilitating pain I feel everyday.. Thank you all so much for always supporting me.. It means the world to me #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #chronicearinfections #chronicpain #chronicillness #tensunit #toomuchpain #invisibleillness 1w

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scoliosisstory I know I'm in a lot of pain when my face gets flushed and my cheeks turn bright red ... Been in fetal position for a couple of hours.. None of my meds are working like they usually do.. My ears hurt, my neck feels like it's squishing my brain, my back is killing me, and the nerve damage in my hip is flaring up, bad... Trying to stay calm with Heating Pad, Netflix, and my Bestie... But my pain is just #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #headache #nervedamage #earache #backpain #chronicillness #chronicpain #netflix #heatingpad 2w

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scoliosisstory I need to try to remember this more often then not... I haven't finished school, I don't have a job... Just because I'm taking longer to do things due to medical issues doesn't mean I have failed... #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #chronicpain #chronicillness #chronicearinfections #iamgoodenough 2w

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scoliosisstory My best friend is having a really hard time with her recovery from her #tubeplacement ... {by the way she loved the video} She is a lot of pain, and feels as tho it isn't normal... Can I ask you all a favor? Could you please send prayers, thoughts, good vibes her way? ️ Thank you all in advanced I love you all! #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #MALS #gp #tubie #tubeplacement #gastroparesis #bestfriend #loveher #hardtimes 2w
  •   kaitlynghawkins Praying! 2w
  •   sapereirajoana I know what is living with severe pain 24/7. I know what it feels like to have to stay strong even when I just want to give up. I understand the pain. I understand you and what I want is you staying strong even if you just want to give up. You are not alone. Sending all my love to you 2w
  •   itsapotsielifeforme I have definitely been through many of those so i know it sucks Sending lots of hugs and prayers her way Tell her she can DM me anytime of she has questions or wants to talk! 2w

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scoliosisstory The girl on the left, she has invisible illnesses... The girl on the right, she also invisible illnesses but you would never think so right? Invisible illnesses are very real... I hurt on the inside but no one can see it... No one would think that my spine is twisted, screwed, fractured disc, headaches... They just look at me and see an ordinary girl... I hurt, but I'm not giving up.. #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #chronicpain #chronicillnesses #invisibleillness #sick #pain 2w

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scoliosisstory Doctor of the day.. PCP.. Yes my socks say bite me 🙃 .. It went okay, this doctor is seriously my life saver... I've been having troubles with my ear infections, ears bleeding, etc.. So he put me on ear drops again.. He also wrote me a script for Ativan, when my pain gets bad I cry and cry, which worsens my pain, so if I can calm down a little bit my pain meds might work better... He also ordered a MRI of my spine because I have decided I am going to the Mayo clinic in Mesa, Arizona to see some specialists who I hope can help me... Thank you for all of the endless amount of love and support you guys show me.. It means the world to me #scoliosisstory #mayoclinic #Arizona #scoliosis #klippelfeilsyndrome #chiarimalformation #chronicearinfections #complex #chronicpain #chronicillness #biteme #doctoroftheday 2w

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scoliosisstory I don't post sad pictures like this to get attention, to have the pity of others.. I simply post it to let You all know that I am human. I cry, for hours on end.. I have bad days.. I get frustrated because I want answers to medical issues.. It is okay to, break down, and cry, lay in bed for a day.. Just don't stay that way, get up and fight again.. | I was up all night balling my eyes out, tons of pain.. It hurt to lay, to sit up, to stand... So I cried and I cried.. I woke up to find someone had left the gate open and the dogs got out.. Had to get up (painful) run out to my truck (painful) and go and meet the dog catchers who were trying to catch my boys ... So I got my dogs In my truck and safely home .. I also got a ticket, for having 2 dogs @ Large .. my dad... Screamed at me quite a bit for being stupid ... I've taken lots of meds and I'm going to try to relieve this pain I'm in ... I hope all have a great day and remember it is okay to break down sometimes. {tearsbuildstrength} #scolisosisstory #scoliosis #klippelfeilsyndrome #chairimalformation #chronicillness #chronicpain #dogs #badday 2w

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scoliosisstory I'm sure many of you who follow me know that this is my best friend... In the whole world.. Right now she is undergoing a feeding tube placement surgery.. I just know she is going to do amazing ️ My special project I mentioned yesterday will probably work better if I write it out right here... I wanted to send her tons of get well comments/notes.. And Put together a video of me reading them to her.. If you could comment a get well note it would help so much ️ and if you would like to share this on your page and get even more get well wishes for her that would be AMAZING! I want to do something special for her; and I think this will do.. Thank you to all who help me with this #scoliosisstory #scoliosis #gastroparesis #MALS #gtube #surgery #bestfriend #help #specialproject #getwellsoon 2w
  •   zassusince1984 We are also by your side. Holding your hand in spirit and sending lots of love good vibes and prayers your way. God send you already your best friend he will also send you healing vibes. Stay strong it will pass and good days will come!!! 2w
  •   skylee.johnson Praying for you and a quick recovery! Keep your head up! Never forget God loves you!2w
  •   mel.deitrich_ wishing you a wonderful & speedy recovery! just remember philippians 4:13, "I can do all things through Christ who strengthens me". (I painted that on a canvas & had that in my hospital room for my surgery!) 2w
  •   sapereirajoana What can I say? You are a superwoman!!! Praying for you and sending all the love You can do this! 2w
  •   allegra_irishdance Hey Bre, I've been following your account for a while, and I have to say you're one of the strongest people I've ever interacted with. I really hope this surgery will help you. I know you'll recover quickly! Stay strong 2w
  •   katelyndianne723 You've been a fighter from day one Bre.. Don't give up. Not now, not tomorrow, not ever. You are in my prayers always️ love you so much, you can do this!! 2w
  •   mitofighter Ur an inspiration and so strong 2w
  •   tekaylalala I had an ng tube before I had a g tube and as much as it sucks to have surgery, having the g tube is so much easier! Best wishes xoxo 2w

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scoliosisstory I ️ This quote! Please Read Below
I am doing a special project for someone.. And I need Your help, if you would like to help me please comment below and I will let you know how you can help.. It is something special that you can be apart of #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #chronicpain #chronicillness #pain #specialproject #help
3w

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scoliosisstory A new blog post.. Link is in my bio.. It is about the support I have on my medical journey ️ Having a very pain filled day today, too much pain to move.. Hopefully we can find a surgeon willing to help me, this pain is a lot to handle.. Thank you to all of you who support me and care for me, it means the world to me #scoliosisstory #scoliosis #klippelfeilsyndrome #chiarimalformation #chronicpain #chronicillness #backpain #headache #blogpost #blogger #supportsystem 3w

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scoliosisstory Having a lot of pain .. Pain management is trying to keep it controlled with numerous medications, just hope I can get someone to help me with a more permanent solution... All of you who have DM'd me with Surgeon recommendations, Thank You! My Mom and I are looking into all of them! Hopefully we can get a plan worked out! ️ For now, I'm in pain, I'm drugged, I'm tired, but I'm not giving up! {1$ cheetah print, watermelon shirt for the win 🐆} #scoliosisstory #scoliosis #chiarimalformation #klippelfeilsyndrome #chronicillness #chronicpain #painmanagement #pain #headaches #backpain 3w

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scoliosisstory Where I've spent my day... Headaches, Back Pain, Sinuses... All day everyday.. I have a Broken Disc and a Herniated Disc along with everything else, so those are causing quite a bit of pain... Trying to stay distracted with Netflix and Instagram.. I hope you all are doing well, as always I love and appreciate each of you.. #scoliosisstory #scoliosis #chiarimalformation #klippelfeilsyndrome #chronicillness #chronicpain #netflix #damageddisc #herniateddisc #brokendisc #headaches #backpain 3w
  •   scoliosisstory @flsungrl71 @they_call_me_chrissy_bear @sapereirajoana Thank you so much for the support 3w
  •   staciejustin @scoliosisstory yes girl. I fight through pain daily and take a lot of similar pics and posts to my inner circle. Bravo for having the courage to share how hard this life is with the world. I believe every experience has the ability to make us better or bitter. I try for better. It helps to know others understand. Hang in there. Keep sharing your truth. 3w
  •   zassusince1984 Hey Madi. My mother in law has two broken discs and it caused pain! On the beginning when it is fresh broken it hurts a lot because it scratched on the other disc. When there goes some time the pain will begin to feel not so intensely. She needs to take a lot of protein to help not broke the other discs. And we are thinking about cbd oil for her. Try this Madi. It will not take it all away but help sure! And it can't cause any bad side effects. In Germany it is not so easy to get cbd oil. But you in USA could give it a try. You picked a bad Doctor. Search for another who would like to help instead of making money. Lots of love to you amazing strong being. 🏻 3w
  •   ellaz_amazing Hey what's a decompression thing? How did you end up getting the pain...I can't remember what it's called? I just found out that I also have chiari along with scoliosis 3w
  •   ellaz_amazing Your strong. Times may be rough. Keep fighting. 3w
  •   humazmaz I hope you get well very soon 🏻 2w
  •   scoliosisstory Thank you so much @humazmaz 2w
  •   scoliosisstory @ellaz_amazing a decompression is when they take out a part of your skull to make room for your brain due to chiari... 2w

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scoliosisstory Having a really hard day today... In a lot of pain.. Throbbing Head, Breathtaking Backache... Just all over pain. My mother had to assist me in showering because of the pain.. I just hope we can find someone to help me soon: to help this pain... I can't thank my best friend enough for always being there for me and helping me through days like this... Painful days like this seem to be more often then not lately.. So thank you to all of you who are always so sweet and supportive I couldn't do it without you #scoliosis #scoliosisstory #chiarimalformation #klippelfeilsyndrome #chronicillness #chronicpain #helpme #roughday 3w
  •   chronicallysurviving thinking of you and hope these days don't last long 3w
  •   zassusince1984 Hey sweetheart. Hang in there. There is a doc outside which will help you. You just haven't found him yet. We are praying for pain free days and a laughing Madi. Much love to you. You will get through this. 3w
  •   abb1738xx My prayers are with you stay strong 3w

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scoliosisstory #Netflix, #HeatingPad, #Headache, #Backache, All Day, Everyday.. This pain is getting out of control, my mom and I are looking into the Mayo Clinic, and other hospitals... I'm so done with feeling this way, just got to keep on, keepin on.. I hope you all are doing well, I appreciate everything, the comments, DMs, advice, love and support.. I couldn't do this without you guys #scoliosisstory #scoliosis #chiarimalformation #klippelfeilsyndrome #chronicillness #chronicpain 3w
  •   mmorales706 Praying u get some pain relief soon. My daughter is getting nerve ablation done to help with pain, she is also in pain 24/7 due to scoliosis 3w
  •   sonalihimasha scoliosis ruins my life..dont worry we all will be okay soon.. 3w
  •   laurasteiss Sending love your way 3w
  •   sapereirajoana Hope we can have the strength to keep living with so much pain 24/7. We don't deserve this. Sending all my love to you 3w
  •   rollinwithrachel I'm praying for you@scoliosisstory 3w
  •   brittneysfight Always sending love and prayers🏻 3w
  •   scoliosisstory @mmorales706 Thank you so much! I'm so sorry about your daughter, I hope she gets relief soon ️ // @sonalihimasha Yes we will be ️ // @laurasteiss Thank you SO much for always being supportive.. 3w
  •   scoliosisstory @sapereirajoana Thank you so much! Hopefully relief comes for both of us soon ️ // @rollinwithrachel Thank you so much! ️ And welcome to the spoonie community here on Instagram, I hope you are doing well! ️ // @brittneysfight Thank you So much for all of the love and support 3w

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