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11:50am August 8, 2013

➸ Not Enough Spoons: I'm looking for information/advice on feeding tubes.

pagentstorm:

For those thag don’t know, my gastro problems are eosinophilic gastroenteritis, chronic gastritis, GERD, and IBS. I have tried liquid and elimination diets and nothing has helped. I am currently on Hydroxyzine, Levsin, and Gastrocrom for these. I was just put back on the Gastrocrom a month ago but…


I have gastroparesis. I got my feeding tube for two reasons. One, I couldn’t even keep down more than one Boost a day. Two, fluid built up in my paralyzed stomach, and then backed up into my lungs and gave me pneumonia.

I have what’s called a GJ tube. The g part goes into my stomach. The j part goes into my intestine. Food and meds go into the j part, bypassing my stomach. Because otherwise the food would sit there for days until I threw up. The g tube is used to drain out the fluid that builds up on my stomach. I can do it by hand (just did moments ago), or I can attach a drainage bag that uses suction to pull it out.

Getting the tube was the best thing that ever happened to me. It probably saved my life. I had to fight for it though.

I was in the hospital with pneumonia. Everyone agreed I needed the tube. They just wouldn’t give it to me. They spent all their time trying to talk me into going home and dying. It was bizarre. I finally had to get folks from the internet to call the hospital and tell them not to let me die, and suddenly they agreed to give me the tube, although they made it hard for me.

I had a lot of complications. First the anesthetic didn’t work while they installed it so I felt the whole thing. Then it got lodged in a bad spot and hurt like hell until they fixed it. And I had a lot of diarrhea at first. The j tube half clogged a few times because it’s thin.

But seriously. My life is amazing ever since I got it. I don’t have to think about food or eating. I can drain my stomach whenever the buildup of stomach fluids nauseates me. I’ve only aspirated one time in several months. Which is a huge difference from twice a week. And my weight is finally stable which is a big deal.

Not everyone has to fight the way I did. I was facing a lot of disability prejudice of the “you’re better off dead” kind. It was weird because the feeding tube was their idea, they admitted I wouldn’t survive long without it, and then they wouldn’t give it to me.

But seriously once I got it and got over the first round of side effects my feeding tube has made my life so much better I can’t imagine life without it. It takes a learning curve but after that it’s fairly easy.