u/hburke0605

I have a G tube for draining and a NJ tube for my nutrition. I can’t tolerate more than a 10 mL per hour for my feed rate and am usually only hooked up for about 12 hours a day (while I sleep) because of how much pain and nausea the feeds cause. Any food that I try to eat (other than slushies, ice cream, and some candy) gets thrown up or needs to be drained because it causes such extreme nausea and pain. I’m supposed to follow the gastroparesis diet and be especially careful with my NJ tube with what I eat, but even though I know it will make me miserable I still try and eat different things. Then I spend hours vomiting and trying to drain from my G tube. It feels so depressing not being able to eat what my friends and family do and when they do so I just try. I can’t keep doing this to myself but I don’t know how to stop. How do you adjust to being on such a limited diet? How can I talk to my family and friends about not offering me food outside of what I’m supposed to eat? It feels so isolating.

I have gastroparesis and because of this I have a G tube for draining and a NJ tube for my nutrition. I can’t tolerate more than a 10 mL per hour for my feed rate and am usually only hooked up for about 12 hours a day (while I sleep) because of how much pain and nausea the feeds cause. Any food that I try to eat (other than slushies, ice cream, and some candy) gets thrown up or needs to be drained because it causes such extreme nausea and pain. I’m supposed to follow the gastroparesis diet and be especially careful with my NJ tube with what I eat, but even though I know it will make me miserable I still try and eat different things. Then I spend hours vomiting and trying to drain from my G tube. It feels so depressing not being able to eat what my friends and family do and when they do so I just try. I can’t keep doing this to myself but I don’t know how to stop. How do you adjust to being on such a limited diet? How can I talk to my family and friends about not offering me food outside of what I’m supposed to eat? It feels so isolating.

I’ve only had my NJ for a few weeks at this point. Prior to it I had a surgical J that ultimately failed and had to be removed. I am starting an internship and need to go in to get my ID badge and official picture taken. I was really counting on my mask helping me hide the tube and am nervous and upset that it will be on my official ID picture. (Not that I think anyone should be ashamed of their medical devices or tubes or anything I’m just personally struggling). I have fun stickers for the tube and I’m doing what I can to get used to it. Any advice for the picture? How do I make the picture focus on me and my face not the tube? I don’t want the patients and families I will be working with to focus on that and that alone.

o I have had my NJ for exactly a week at this point. I have changed the sticker twice and I’m using face/ tube specific stickers. I am normally sensitive to adhesive so I expected some level of reaction from this but I didn’t expect the pressure wound or irritation as well. It has been really itchy and painful the past few days but I was convincing myself that I was just being dramatic. When I went to change the dressing today my cheek was red and had like a cut (not bleeding but layers of skin missing and close to bleeding) where the tube had been. I don’t know how to handle this. It hurts so much and the tube doesn’t feel secure when it’s just taped to my nose/ nostril. I put neosporin on the irritated area and have been giving my cheek a break but I need to secure my tube back on my cheek soon as having it taped to my nose like it is hurts my nose and throat. Advice? Tips or tricks?