food the thing “i miss

You don’t realize how much food is a part of your life until you can no longer have it. I am thankful for my feeding tube, but I do miss food a lot! You would never know by looking at me that I have gastroparesis. I just want food!!

Ray

GI advice needed

Hello everyone,
I’m at Northwestern right now. I have a midline and an NJ tube. This is my second NJ tube. I’m not gaining weight on my feeding tube… My small bowel followthrough was normal. The primary care team, not GI said that my problems were most likely intermitent. How is it that I could have an abnormal gastric emptying test and a normal small bowel followthrough?
Also, I have EDS, and therefore, my vein access is crap. I have this midline, but they only last for 30 days. They said I could get the line replaced every 30 days. I told them this would cause my veins to scar more. They said I was to young for a central line and a permanent tube and that the risk of infection outweighed the benefits. I’m just confused. They also said that within a month, they hoped I wouldn’t need tube feedings anymore. I’ve tried all the meds I can try for GP and all the surgeries are considered experimental. My insurance won’t pay for them. I was 88 pounds when I came in here on Wednesday, and now I’m 85.3 pounds. I don’t feel like I’m being listened to. Any advice?