Hey All - well JC went in and got PEG put in and he seems to be having a difficult time with it - when he turns his neck or his legs he gets a muscle spam as he describes it, and this causes pain and discomfort of course (and it is day 3 now and still happening) - i am thinking thas this in NOT normal after reading some other posts. the PEG site itself is doing well. he has had an ulcer removed some years ago and i am wondering if this has something to do with it - has anyone else had this type of thing happen with the PEG and if so, what did you do. also, they left about 18 inches of the tubing, that seems to be alot of tubing out there from the pictures i have seen - is that normal also??
he starts IMRT on tuesday and would like to have everything taken care of before then (like him being comfortable again!)

You don't mention where the muscle spasm is, it would seem that since you are writing about the PEG, that it is in the area of the PEG. It seems unusual for an abdominal spasm to be initiated or referred from movement so distant to the site. I haven't heard this from any of the many people who I have discussed PEG's with, so it is worth asking your doctor about. As to the length that is hanging out, this is pretty arbitrary. I had about 10 inches, and it made it easy to work with, without the sensation of it pulling on my stomach when I was hooking it up or injecting meds into it. While it was longer than I needed, a roll of white tape was part of my daily accessories so I could just coil it up when I wasn't using it, and tape it to my stomach, out of the way of everything and well hidden under a tucked in shirt. Shortening it is easy, and while it is something that you can do yourself, I'd prefer that you asked your doctors about doing it if you feel it warranted.

Hi Brian - yes, it is in the area of the PEG and the spasms will hit at any time - especially when he has to get up from the couch or out of bed - seems as tho any movement will trigger it which concerns me as i dont like to see my husband in ANY pain ( and he has a high tolerance to pain!!), i have been cruising the forum for info and have seen that others havent just "snapped" back after a day or two. i am planning on calling the doc and let them know so that maybe they can check it out to see if something isnt quite right. it is my understanding that there should be no discomfort after the initial shock of having it put in and a few days to recover from that shock. also, any words of wisdom on the subject of constipation which seems to be yet another issue in the past day or two??

You can start out with over the counter stool softeners, and laxatives. Pain killers are notoriously constipating, and liquid diets, like Ensure etc. are protein rich and fiber low, so they also contribute to the problem. Lack of movement and exercise plays a role as well, though nobody is going to change this part of it all since all we want to do when going through treatmenst is sleep...
There may come a time when prescription laxatives are necessary, get them early and have them ready. This is just one more of the crappy, (no pun intended) degrading things you have to deal with as part of normal treatment. If it isn't one thing, it's another.

Hello,
I just had the PEG put in on Friday and I am still having cramps and pain when I stand up. Not sure if the bruising is normal but I have that as well. It is 2 weeks to my surgery so I hope by then I will have this the PEG mastered. I'm curious if anyone else has had their PEG put in so far in advance?
David

Hi David - well, JC has already had his surgery and is starting radiation tomorrow and we had the PEG placed in advance so that when it gets too tough for him to eat there should be no problems! he is still having discomfort with it and a trip to the hospital happened on saturday night - when i went to change the bandage around it there was alot of blood, so off to the hospital we went - seems as tho he had a hematoma under it and that is what all the blood was about. tho it has stopped draining, the discomfort still remains - not to mention the frustration of all of this. so we have the PEG in place way ahead of time also....

Hi David:

My Dave also had his PEG tube placed in advance but in his case it was after the neck dissection and before radiation so we were ready.

People live for a six pack and tight abs-PEG tubes are the one area in life where tight abdominal muscles are a downfall because post-insertion pain and spasms increase tremendously.

As nurses, Dave and I have witnessed many a gleefully confused elderly patient yank that PEG tube out and look completely unphased. Our conclusion is that in this case, jello belly is the ticket.

Best of luck and send along any more questions. We'll spare you the sex with the PEG tube stories we heard from some of our more colorful OCF members when Dave got his tube until you can see past the pain to find the humor!

Hang in there,

Kim & Dave