Other than the psychological hurdles that may be associated with a peg tube,
how does it – you know – feel?
Does it hurt?
It’s kinda like having a stiff plastic tube sticking out of a hole in my belly. If I sit and worry over it, I can become aware of a bothersome irritation. So, I try to ignore it and mostly that’s just fine… But if I accidently bump up against the tube where it meets the site, I notice it!
Does it bleed?
There is some effusion – sort of a slimy substance – that’s probably a little blood (if I stretch unnaturally or the tube gets jostled), a little bile, and a little scabbing over that breaks loose. Overnight sometimes that leaked effusion gets crusty and is somewhat disconcerting. But basically all that is very minimal. After a week or so, what little there is becomes second nature to clean up.
How do you keep the site clean?
For the first week or so there are bandages and stuff to change and keep clean. From then on, it’s simple soap and water in the shower. I just suck in my belly and run my soapy finger up under the flange to clean away any crusted-up effusion. After my shower I use a tiny square of gauze to dry under there – cleanliness is everything!
Is there any danger of it falling out?
Candidly, for the first week I had my PEG tube, I worried constantly that I’d catch the thing in my belt or turn the wrong way and – POP! – it would fall right out… That’s silly. The balloon behind my stomach wall does a fine job of securing the PEG tube. And I keep the flange snug up against my belly so all the movement is external, at the feeding end.
Do you feel full after you ‘eat’?
Yeah, I think so. I’ll admit, it’s not like regular eating: eating when you’re hungry and not eating if you feel full… Let’s put it this way: I don’t ever actually get hungry!
Until I learned what my best schedule was, per the doctor’s prescribed feeding (120 ml of water – 1 and ½ cans of Jevity – 120 ml of water), I would sometimes feel bloated. Now I’ve worked out a pattern of 3:15 between feedings. Works just fine for me now…
Does your mouth taste bad, does your breath smell bad?
Oh yeah! Sometimes my mouth tastes like a sewer. Nothing going down the old tubes means there’s nothing to keep your mouth tasting minty fresh (I do still burp, in case you were wondering).
Gargling mouthwash first thing in the morning – and on and off during the day – does wonders. Sometimes, as a treat, I gargle with Bailey’s Irish Cream. Yum!