It's been almost four weeks. I was in the hospital a week after they put it in because of pain.

I still can't bend at the waist. The tube has had to be repositioned once already because one of the guards (it's not a triangular guard, but a canoe shape) slipped inside. The area around is red. I have a burning pain in my side. My doctor only sees patients weekly and doesn't seem to be listening. Or believing.

So I ask you guys. Are these things normal?

anne (hateful and mean and dispairing)

Anne:

Has your PEG tube been loosened? My tube has that same type of guard and it was too tight. Once the doctor loosened it, I instantly felt releif. When was the last time you saw this doctor? You need to go back, if you call and the receptionist doesnt get you in right away, tell them what you wrote here. Let them know you need to be seen right away that you have some major problems with it.

The tube can get red around the site. I put some antibiotic cream around the tube site and cover it with gauze, that might help.

It's been loosened. It's covered with guauze. And antibiotic cream. What worries me is the burning pain in my side that's nowhere near the site.

When I call, I'm told to go to the ER if I can't wait a week.

Which I guess I'll do. Again.

Thanks.

Anne,

You need to have it seen and soon. If your doc can't see you, insist on seeing someone else.

Don't take 'no' for an answer.

Yes, see someone else -- At worst, the PEG and the pain might be coincidental and something else is wrong -- PEG doc lives in specialized world and you may need someone general -- If PEG is the problem, general Doc will tell PEG Doc, who will then have to do something.

Anne,
I also had trouble bending over after they put in my PEG, but it only lasted a few weeks. For those few weeks I had to squat down and avoided bending my waist or torso.

I would have swore they left something large with pointy corners in my stomach. But after a few weeks I was OK.

So sorry to hear that you had to give up some of your pets. I just have a cat but it follow me around like a dog.

You really must talk with your medical team and the Cancer Society about getting a support network setup to help you get through this.

I am single, no family in the area, live alone and so far I have really just needed someone to get me to and from surgery (including PEG).

I have a few more week of treatment to go, plus recovery so I probably will need some help and if so I have a support network to fall back on. Friends check on me every day (which often makes it difficult to nap). Although some friends might shy away, there are others that become closer and even new friends to be made.

Are you being treated at a Cancer Center? You need a good medical team.

You can beat this.

You might also try just pulling the tube out just a couple of inches and twisting it around -- That may make it all seat better.

Don't be afraid of pulling it out -- There's a lot of tube in there and some have something on the end to prevent it coming out, but not all do (my first PEG had a stopper, but my current PEG doesn't, just a kind of spiral curve).