Anyone else have problems with a G/J tube?

[deann-r]

Hey! Good to hear from you despite the troubles you’re having. Obviously I can’t give medical advice and only speak from my own experience but I have had similar issues with leakage of my g-tube. Mine isn’t G/J, so yours might be more complex but for me there are a few reasons for drainage/leakage.

It’s important to have the correct tube sizing, the GI practitioner can measure you when they change it. Also having the correct amount of fluid in the balloon is important. That can be checked periodically. Different brands have different fill amounts. I also suggest before they insert a new tube they inflate and deflate it to check for defects as that can happen. Do you know what brand you have?

I am surprised they replaced your first one with another mushroom style. My impression is that’s for the initial placement only, but maybe it’s different for g/j. That mushroom was no picnic getting replaced. Sorry you had to do it more than once.

Are you using the same formula/feed rate you used before? I’ve found that can play a role in leaking as well. Through a dietitian and my own research I’ve learned with SMA our digestive capabilities could be different. I went with a more elemental formula that seems easier for my body to break down. A slower rate can help too. It gives our bodies a better chance to absorb it instead of trying to find an escape route. I also water mine down for extra hydration and to thin it out a little. I’ve heard Coca-Cola down the tube can help with clogs but I haven’t needed to try it.

My local clinic is pretty much clueless, so I go about an hour down the road specifically to a GI clinic. Now that I’ve had it a while we can do the tube change from home so only go to the clinic periodically. With g/j though I don’t think you can change it at home. That reminds me I’ve gotta get one ordered. I like having a spare on hand just in case. Is yours a button or a dangler? I’m sure there’s more correct terminology but you might know what I mean. Hopefully if you like the latest clinic they can help figure out the issues.

As for preventing irritation, I use A&D ointment around the site. Every morning, noon and night I have someone wipe around it with a clean cotton ball dampened with water, dry it with another cotton ball then apply A&D with a q-tip around the site. I then do a split 4×4 pad under the button (controversial I guess) and a 4×4 gauze pad over it to help with drainage held in place with paper tape across the top creating a flap. My insurance covers all the supplies except for the ointment.

With all that said, sorry it was a lot, I still get drainage. Sometimes more after a button change. Sometimes good from the get go. It’s frustrating for me but a necessary evil I guess. Hopefully you’ll have improvement over time. I’d say mine is manageable now.

Sometime, if you’re comfortable sharing, it would be interesting to get your take on the different facilities. What you liked, didn’t like. What choices you had. I’ve done the short-term thing but knowing the ins and outs might be helpful down the road.

Take care, and remember, you got this!

[mike-volkman]

10 years ago they made a case for putting in a G-tube right after they installed a tracheostomy. The reason that they gave me was that there is a tendency for people with a trach to aspirate food and liquid. That is not the reason why I went ahead with it. I remembered later that other friends of mine who have a trach did not also have the G tube and didn’t need it. I got it because I have problems with my teeth, I need to purée everything I eat, and I was under the impression that this way would be easier.

Medically, there may be nothing wrong with using a formula for all nourishment. They don’t want us to use regular food because they say putting it through the tube could lead to infection. That means the science about this is still very primitive. Everybody constantly hears from their parents, their teachers, doctors, and health reporters how important a balanced diet is with things like fish, olive oil, walnuts, and such. Why can’t they put that into the formula? All the formulas out are there based on milk protein with some variations in things like sodium, sugar, fiber. But once they send you home with that G tube, you have to sign a contract that you will take more than 50% of your nourishment with the formula through the tube.

It was OK. Not great. It is always sticking out and in the way. There is a plastic circle that is supposed to be some kind of stabilizer to hold it in place. The balloon on the inside of your stomach has to be right up against the wall, otherwise it leaks. Anything you eat or drink could end up in your lap. That stabilizer doesn’t have anything that grips it tight on the tube, so it slides away. After three years, it was not really doing anything to hold the tube in place. And here is another thing that is a big concern if you have SMA: no body fat. The total distance between the inner wall of my stomach and the outer skin was 1.5 cm. There was where and tear on my stoma. The tube I started with was a size 20. Three years later I had to move up to a size 22. One day I was in the hospital for something else and it fell out. They didn’t have a size 22. A 24 went in easily. Even so, it was at the point where I couldn’t keep food in. I went to the ER after three days of malnourishment with a heart rate of 36. I had already decided to get rid of the G-tube and go back to full-time purée. It seems simple, doesn’t it? I tell the doctors that I need to close that hole and get some protein in me. They wanted to admit me and give me IV drugs. I was incredulous. That they changed their minds and sent me home, still starving.

The surgeon at first felt as if the surgery I would need to close the stoma would be too risky for me. For the next two years I had to keep it in there just to plug the hole so I don’t starve. July 16, 2020 I had to go in for something else, a kidney stone. The floor doctor saw the stoma and was very nervous about it. He got the surgeon on a Sunday morning, who suddenly changed his mind about doing the surgery. As it turns out, not only was it not risky, but he honored my request to do it under a local. Easy Peezy. Everything is as it was before I got the G-tube, with everything puréed. If and when I can’t do that anymore with further atrophy taking that away from me, I will probably go through the other option for nasal-gastric feeding instead of the G-tube.

[survivinglife]

Thank you guys. You both mentioned a lot so I’m sorry if I forget something…

1. I am working on getting my YouTube channel back up and running and I plan on Having a video on All the different nursing homes I have been to.

2. My feeding tube is a dangler lol

3. I am on the same diet I have had for 8 months. I use formula. Everything seems fine in that department.

4. I don’t have access to a GI doctor right now. That is 1 of the things That sucks about living in a Nursing home.

But the nurses clean it every day and put barrier cream and gauze around it. It seems to be back to normal. I don’t know what happened but I’m happy it’s doing better.