Funny this thread got resurrected because I'm dealing with this very issue right now. I'm on my second external stent and the pain at the site where the tube exits my abdomen has been very problematic. I'm also experiencing back pain that is getting more and more intense.
I can't stand up straight becuase it pulls on the tube so I walk around a little hunched over, bending over hurts, laughing or crying hurts, taking too deep a breath hurts. The whole thing is very unpleasant.
My tube exits in the center of my belly, and I do experience pain from time to time on my right side which I assume is the tumor pressing against nerves.
Eating intensifies the pain, it's like having food in my belly pushes against the drainage tube and really hurts, I can only eat small portions, some days it's hard to even drink water becuase of the pressure pain.
Flushing the drain with the saline water is also difficult because it creates more painful pressure and I dread it.
Apparently there's not much to be done about it. The doctors seem to be happy just to hear that it is draining and seem reluctant to do anything unless it gets blocked up and stops draining. Meanwhile they just recommend pain pills to deal with it.
I am supposed to be getting myself strong for surgery this week, but this drainage tube is making that very difficult, and I am shedding more weight (6 more pounds this week!) and feeling very dehydrated. I am hoping I can at least get some IV fluids to relieve the dehydration symptoms.
Very frustrating, feel like I just have to hang on as best as I can while waiting for the verdict about whether the surgery is a go or not.