In some cases, perhaps, but not this one: my breakup with PEG is imminent. We’re scheduled for tube removal on February 8th in the afternoon.
It was a little amusing, our visit with the gastro guy. Young guy, friendly, funny. He tugged on the tube, pulled it back and forth (which made me want to smack him, since, you know, it hurts a bit when they do that and then for some time afterward, not to mention it allows more granular tissue to form – the stuff that makes it look like the insides of your gut are trying to escape – which sticks to the gauze dressing and pulls if the gauze rides up too closely to the tube, and which then dries and has to fall off or be cut off, etc.). He tells us that he can probably pull it out right then and there, but it would be painful, a bit barbaric, and pretty messy. The more humane way, he says, is for them to knock me out, send a scope down to snip the balloon, then pull it out and sew me up. Hey, I’m all for that, since that’s how they put it in.
I’m looking forward to it, although I know it will involve some discomfort again when they pump air into me. It will be so very nice not to have to worry about the tube getting tangled, not have to do the daily cleaning rituals to keep things clean, and get rid of the itching around the tube placement – since it’s a wound that’s constantly trying to close, it itches almost all the time, and it’s a bit raw where the flange of the tube rests and rides against my skin.
Of course, this means that any medications I may have to take in the future will have to be crushed and I’ll have to drink them down. Eww.
I wish I had been offered that option. I expected some Lidocaine at least or an anti-anxiety pill. Nope, hte internist just grabbed it and yanked while we were still discussing it. It lit me up badly at the time, and hurt for several days. It did close up right away though. Only seeped a little overnight. But it still protruded for many months and is still apparent 15 months later. Take the anesthesia.
Heck yes, I’m taking the knockout for this. The thing still aches where the tissue has formed up around the opening after the doc pulled it back and forth a few times for me. I haven’t even been able to dress it this evening, because the gauze gets stuck on the granular tissue as it dries, then the gauze pulls it when I move. Pain in the ass – or abdomen, as the case may be.
I wish I had been here earlier. I have posted instructions on the care and feeding and cleaning of PEG tubes on alt.support.cancer and Yahoo Groups: Throat Cancer. The granular stuff is crystalized serum. I recommend keeping the gauze loose enough to slip a fingernail under it and _carefully_ picking it away several times a day. If not, it will be the seed of a larger crystal and heal into the edges of the stoma. Do not be alarmed if it appears to be an unhealed wound. That is what it is; and it will heal readily once the tube is removed.
And most important and the one that no one warned me about, take two syringes (60cc each = 120cc) of water after feeding for flushing the gastric tract and hydration. It will help you medical food sit better and discourage nausea and vomiting.
Thank you, Annette for giving me the soapbox to preach on.
My soapbox is your soapbox.
Care and feeding of the PEG wasn’t altogether too difficult for me throughout everything (except the difficulty certain people had in talking me into actually pouring something down the tube when I really didn’t feel like eating). Heck, I haven’t even minded the constant attempts to heal my body has been making since it was placed: it lets me know that function is still working, and the more it’s been trying to heal the further I get from treatment, the better news that is to me, since it means that the body is working away.
Some of the nurses were surprised that I had managed to keep it patent for so very long – and that was partly because I had to have some way to eat and partly because even a little bit of backflow was a nasty reminder of it all. It was only when I had to be in the hospital for the gallbladder thing that it got bad, because I wasn’t permitted to take anything by mouth or tube (only IV), so by the end of my stay, it was a little creepy.
Soon, though, it will be a memory like the rest of this sordid ordeal.
Thanks for the tips – I get people rolling through from time to time who can probably use the information.
I am very happy for you! One step closer to being “normal” again! But, what is normal we ask? Glad to hear you are doing well…