I just finally had my PEG removed after living with it for just over 3 months. If your experience is anything like mine, the area will be tender for little while after the surgery. It's tough to do, but make sure you turn the tube like you're supposed to so it doesn't end up stuck. I noticed that mine would "pucker", for lack of a better term, when I felt hungry. It felt like my stomach was trying to suck the tube in and then all of a sudden it would just suck in air around the tube resulting in the tube bouncing around. It was especially bad right after chemo when I couldn't keep food down. After a particular bad bout of this puckering my PEG site would feel a bit tender again, but it usually went away within that day.

I'm not sure if my experience was typical or not, but I hope something in there is helpful or at least puts your mind at ease a bit. The main thing, like everyone else said, is to ask questions if you have any. If it's something that's weighing on you then it's important enough to merit an answer, even if you have to get a little pushy to get that answer.


Dan

Stage 4 SCC on right underside of tongue

DX on 7/19/13 at age 29, no tobacco, light drinking

Partial Glossectomy/reconstruction/neck disection 8/20/13
Temp Trach, PEG tube

4/59 lymph nodes cancerous, 1 with extracapsular extension

Chemo - Cisplatin - 3 treatments started on 10/01/13
Radiation - 33 treatments started on 10/02/13