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Last night my j-tube fell out again. Although I am pretty much dependant on it, I am thinking about letting it close up. I feel like I look like a monster with that thing hanging out of my belly. I know I have to make up my mind quickly because the hole is already closing up. Has anybody that was dependant on the tube let the site close up? How were you able to manage your nutrition? Any thoughts or ideas would be greatly appreciated!
Karen
Hi Karen, so sorry to hear that your tube fell out again. I have been where you are and it is not fun. For me, the J tube was a nightmare all around... caused me tons of intestinal pain... so much so that I could not use it anyways. I ended up switching to a PICC line for tpn feeds. Hope that you are able to avoid a PICC line, as they too have their share of issues. I am guessing that following the liquids only diet was not working for you as you ended up with a J tube... so not sure what to suggest. Just know that I am thinking of you!! Best of luck... Shelby
Hi,
I had a J-tube for 11 years and gained back 50 pounds during that time. I want to encourage you to keep the site active until you truly don't need the tube feedings anymore. The ostomy may have closed by the time you read this. Use the tube feedings to reach a goal and then you can drop it. The intestine is attached to the inside of your abdominal wall, so although you can pull the tube and the hole will close, you will always have some pain where the intestine pulls at the edges. Good luck!
Hi again,
I forgot to mention the best way to secure the tube is 3M 2" wide Medipore tape and 3m No Sting Skin Prep. I have tried all kinds of tape and skin prep and these products are the best. I insisted that Coram supply them to me and they did.
Mine fell out constantly and I was leaking everywhere...it was awful....they finally did have to close mine up...no matter what we did, it did not work....now we're thinking about a perm. port...what are you using yours for? Feeding?
Laura
Well, I think I decided to let it close. I was using the tube about 5-6 night a week for feeding and almost all of my meds. I've had nothing but problems since I had it inserted 3-4 years ago. I've been trying to eat a little bit everyday now, but it is really hard. My tummy is very sore and I am vomiting a lot. It probably isn't the best decision I've ever made, but I'm just so tried of looking like a monster. I know once my GI doc finds out, he will be pretty pissed off. I don't know how long I'm going to last like this, but I wanted to give it a try.
Karen
MY GI is going to be PO'd if I don't get a port, but you know what? It's YOUR body, your decision. I am sure you don't look like a monster, though. If you're not happy with it, and if it isn't doing for you all it needs to, then I am voting with you....lose it.
You CAN get a PICC line, (PIA though) but a port might work....ask your doc about it if you still need to continue feedings...big difference with a PICC , Port and J-tube though...PICC's and Ports require you remain hooked up for 8-12 hours...that's the really nice thing about a J-tube...
you can feed when you want/ need to.
good luck, honey.
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