Fighting for my life while being treated like a guinea pig

I am a 41 year old wife and mother of 3. I was diagnosed with Gastroparesis 6 years ago. I have had 27 surgeries due to my illness. I have been on Social Security Disability for 4 years. I was tube fed for 3 years and have recently just had to have an NJ tube inserted . I am fighting for my life while being treated like a guinea pig and yet there is no hope around this disease. While I was tube fed I had to have 15 surgeries to either change feeding tubes or because of complications from the tubes themselves. I honestly felt like the feeding tubes were going to kill me faster than my actual disease. I made the choice to have my feeding tubes removed. Now social security is saying I am basically cured because I made the choice to have the tubes removed. I am on the verge of loosing my disability benefits and my medicare because of this and yet I just had to have a NJ tube inserted because I was unable to maintain weight and nutrition after my last surgery in May which replaced my 3rd Gastric pacemaker. I cannot work and I am now tube fed again. Life is traumatic and hard. I now have a home health nurse and dietitian along with 6 other specialists and yet I am nowhere near cured or healthy. Depression has overwhelmed my mind and body as I have tried to navigate through this disease with what seems like no help or support from my doctors or the government. Please help me!

Submitted by:  Tyanna Sanders

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Most ERs We Have Been To Do Not Even Know What GP Is

First off, seems like most ERs we have been to do not even know what GP is.

2nd off, seems like if you are vomiting worse than usual, lethargic, or can’t even hold down water and you know it’s not your GP acting up, the ER will automatically brush every symptom as ITS JUST GP and not do anything. 

 

Seems like every ER is afraid to touch a child that has GP. Seems like many do not even know what safe meds are and aren’t for GP. (My son was given meds for a virus the other day meanwhile his GI said it was one of the worst meds they can give GP person)

I was told by a doctor that i must have been doing drugs when I was pregnant because that is the only reason my son must have GP and rely on a feeding tube to survive. 

 
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Faces of Feeding Tube Warriors

Throughout the weekend I have been making another awareness video

This one is to show the faces of the feeding tube warriors.

  Please show your support 🙏💚

These people are fighting for there life daily please hit like, give the video a thumbs up on YouTube and hit subscribe to see all my other awareness videos.

MOST OF ALL..

SHARE SHARE SHARE spread awareness! 

Thanks so much, Bec Mellett 

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GP Is Not Going To Win

Nathalie Gras-Monahan (Mom of Sydney)

I’m sharing my daughters post not only because I’m so incredibly proud of her but to show also that GP has not stopped her to follow her dreams and hopefully give hope to some others out there!! Diagnosed almost 3 years ago, has been through hell & back, is a tubie but has so much determination to not let this horrible disease control her life!!
#GPwarrior

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I’m Still Here GP

I am Cristin McCraw. I’m 44 years old. I’m a survivor of idiopathic Gastroparesis. I was diagnosed in 2010, and had no idea what a wild ride I was in for! I began having symptoms in 2009, and my PCP Alison H. Nguyen, M.D. , actually came up with the idea of me possibly having idiopathic GP. These symptoms included nausea, vomiting, severe weight loss, malnutrition, abdominal pain, bloating, severe constipation, night sweats, fainting, fatigue, trouble concentrating, and so forth. We can all go on for hours about our symptoms.

At that time, I was working on E2 ICU at Stanford Hospital as an RN. This was my dream job of course. 

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