Well, I go my PEG placed yesterday. How long does the pain and soreness last. I swear this pain is worse than the c-sections I have had. Today is my simulation and tomorrow is the port. Anyway, we are getting things done, and I am ready go get all this started. I did cry yesterday talking to the gastro Dr. who put my tube in. He was really nice about it, and said go ahead and cry. He said this stuff is nasty stuff. His nurses said that if I cried too much they may start crying right alog with me. I really have some wonderful Drs taking care of me and a lot of support.

Im sorry you are hurting. Be brave!!!!! Believe it or not, this is the easy stuff. It will be sore a day or two. Your docs should have co-ordinated the peg and port placement for the same time. If the peg tube is too tight the gastro doc may have to loosen it.

My MO tried to ge tit coordinated at the same time, but the hospital would not let him. Somrthing about not getting the money for both procedures. If they do it at the same time, then it would be coded as one procedure and the hospital would not get their money for both procedures. It is all about the money. My MO said he would do them both at the same time, but he does not have those privledges. He could not pull the right strings. O'well.
How do you know if it is too tight?

The peg would feel very tight on your stomach. Have the gastro doc look at it, he would be able to see if it was too tight.

Hi Angelia. John had his neck disection before he had his PEG placed. He said the PEG placement was the most painful procedure he had done during treatment. He didn't take anything stronger than Tylenol through treatments but took prescription pain killers for 3 days after having the PEG placed. He said it felt like he got kicked in the stomach. He was sore for about a week. HOpe you feel better soon.

Angelia

Luckily I was still in so much pain from my glossectomy and neck dissection and free flap surgery, the PEG was just another note in a symphony of agony. The Psychological pain of the PEG was much worse than any physical symptoms as the PEG repesented the end of the fiction that I could deal with this cancer on my terms. I hated the thought of a PEG and hate the reality of a PEG even more. Yet, I would be dead without it now.
Your PEG should not feel "too tight" - I don't even notice mine now at all.

I was talking to my dietician on the phone today and she was telling me how to clean it and asked if they had given me a syringe. I got absolutely nothing to clean this thing with. She told me that it had to be cleaned everyday. The book they gave me said that I could turn the bolster and clean it. I can not even look at it without my stomach cringing. I have no idea what I am supposed to do with this thing, because no one has told me. The dietician said she would call me right back, but that was 2 hours ago and I am ready to go to bed.

Angelia,

When the PEG is first installed, its generally quite tight, so you might not be able to turn it easily. Do you have a follow up appointment in about a week with the surgeon? If you don't, you should schedule one so that s/he can loosen it. And as far as I know, cleaning it just involves washing the skin around and under the bolster- just something mild.

- Margaret

I have no appt. with him at all. Now one said anything about getting a follow-up appt. I think I am going to call this morning, because I am worried about it being so painful.

Angelia, we never would have had a follow up appt with our gastro doc if Steve hadn't of gotten an infection at the site. Our gastro doc inserted it and then all questions, information was passed over to our nurses and our dietician. The dietician was our main support. Explained about flushing it, cleaning it and using it. Steve didn't have to use it for the first week so we just had to keep the wound clean. After his infection it was thought better for him to have time to adjust to just having the peg first before we used it. Also we were advised that it was to be left for about a week and then the doctor's would loosen it a bit. Physcologically the peg was a nightmare for Steve but I'm happy to say we are almost at the end of that road and it's about to be removed next week hopefully. Somewhere along the way though you will realise, as we did, that as horrible as it seems it is a life saver. A nurse told Steve "this peg is your lifeline, this will keep you alive". He seemed to accept it after that. It serves a very important purpose, to provide you with nutrition to get you through your treatment so you can kick cancers butt. Hang in there girl, you will get through this and come out the other side ok.
Wendy