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12:51am October 13, 2013

hey-pissant:

For those with GJ tube I have a question. Is site pain common even after over six months? I mean, it’s debilitating. I was curious if anyone else had this problem?

No. It’s not even that common after a few weeks from what I’m told.

I had horrible site pain, that got worse instead of better, up to three weeks and they told me that meant something was wrong. They explored the site and found that something had shifted. They put it back in place, which was incredibly painful for about five seconds, and then the pain began to subside. Two weeks later it was gone entirely.

So if they were telling me it’s not common to have debilitating levels of site pain after three weeks, there’s no way it’s common after six months. Although maybe it does happen to some people. Maybe it could damage a nerve going through, or something. But every time I see someone they ask if there’s site pain because that’s a diagnostic sign that there might be something wrong with the tube or its placement.

In my case it turned out there was this piece of the tube that was supposed to be all the way in my stomach, and it got lodged inside between my skin and my stomach and became so painful it was a nine on the pain scale at the worst and I have trigeminal neuralgia so I don’t use that number lightly at all.

So… Yeah you should probably get it checked. It could be it did some kind of permanent damage to your body going in. But it could also be that something is very wrong with the tube placement. They had to do a live x ray with dye to check me, they couldn’t just feel it with their fingers. I don’t know if your tube is handled by interventional radiology or by someone else, but in my case I had to contact interventional radiology and get it checked.