u/Sweaty_Chipmunk8689

THIS IS A RANT! So I’m currently out of formula and have been forced to eat by mouth. I got a gj tube to do formula in my g tube (which does not upset my gastroparesis) and use the j tube as a back up if I have a big flare up and can use my g tube. But with a new insurance I have run into a problem with my doctor not sending over my orders yet and I have run out of formula. So I’m eating by mouth till I can get my formula again. But holy hell do I miss my tube feeds. Food causes me so much pain and vomiting. And I don’t think I’m getting all the nutrition that I need eating by mouth. I hate eating. I hate the act, I hate how I feel afterwards, I hate having to think about food and cooking. It was so helpful in my mental health to be tube fed and never have to worry about when I’d be hungry or what I’d eat and if it caused me pain or not. I have been desperately calling anyone I can to try to get things moving with my formula order but it’s just not working. I’m honestly wondering if I should just go to the ER and see if they can tube feed me there. I know that would be a waste of resources but my mental health is severely struggling 😭

Ports

I’m having an issue finding exactly where to go for this question, but I’m hoping some of you have ports and could help me. I’m getting a port placed because I get weekly infusions for IVIG that helps my stomach pain and I’m terrified of having it accessed. I know you can put numbing cream on it but I was wondering if anyone had any good success with a certain brand? I see a lot of 50/50 on if a product is good or not so I wanted to know if you guys had any recommendations? Thanks!

I’m having an issue finding exactly where to go for this question, but I’m hoping some of you have ports and could help me. I’m getting a port placed because I get weekly infusions for IVIG that helps my stomach pain and I’m terrified of having it accessed. I know you can put numbing cream on it but I was wondering if anyone had any good success with a certain brand? I see a lot of 50/50 on if a product is good or not so I wanted to know if you guys had any recommendations? Thanks!

How does everyone handle hunger after feeds? I run my feed through my g tube for around 9 hours, but afterwards I get so hungry that my stomach cramps and it’s very uncomfortable. I don’t want to eat solid food as I’m getting plenty of calories through my formula, but my stomach never fails to grumble every time after I’m done feeing for the day. I try to wait to start my feed as late as I can so my feeds end as close to bed time as possible, but the hunger pains are so great that it normally takes me around an hour to actually fall asleep because it keeps me up. Any tips would be greatly appreciated!

What is everyone doing for an itchy stoma? I have looked at the stoma and the skin around it and it’s not dry, it’s not red, and it’s not smelly like a yeast infection or anything, but still very itchy. I change my gauze multiple times a day to try to keep the bile off my skin but it doesn’t help the itchiness. I also put aquaphor around the stoma and the surrounding skin sometimes when I think it might need it, but nothing helps

I just finished The Memory Ward by Jon Bassoff and I absolutely loved it, even gave it 5 stars. But I’m not sure if it is really considered horror or not. It was sold to me as horror but I think it falls more into the thriller category. So what do you guys think? Also if you have any recommendations on anything similar please leave it down below!

So I am still on my first tube after surgery (2/19/26) and I have noticed that it’s starting to smell. I have the enfit brush to clean it, and I do every night, but the smell hasn’t gone away. At first it was just when I would lift my shirt up and I could smell it, but now I’m starting to smell it while going about my daily activities. There is no built up formula and I shower frequently so I’m not sure what to do. I do notice that when I open the g port to feed is where I smell it. And if any water that I flushed previously comes out, that also smells bad. It’s like the whole inside of the tube needs cleaned but I obviously can’t put something down it to clean it. Has anyone else had this issue?

I had my gj placed in February and have had a tough time with recovery. However I believe now I am out of the recovery phase and am in the just living with it phase. Recently it has felt so good that I forget it’s there. I lifted up my shirt in the mirror to adjust my clothing and it surprised me to have something on my stomach. Has anyone else forgotten about their tube or is it just me? 😂