Just returned from hospital; Buzz got PEG, has had TWO oxocodone and is writhing in pain....I did a search and found a gazillion posts about PEGS...don't have time to read all of them at this moment...IS THIS LEVEL OF PAIN NORMAL???

No, Lois

I don't think this is normal but we have only experienced one so we are not the experts. Bill took some liquid tylenol w/ codeine (15cc) right before he was released and did not need anything till the next day so something is not quite right. Bill was sore but not writhing in pain. No one should be hurting that bad no matter what...I would call and get help!

Hi,
Call someone i got a peg and no pain untill thay took it out and then only for a minute or two.
paul

This is absolutely not normal. Call your doctor immediately! The same thing happened to my husband, he had a tear that had to be surgically repaired. Good luck!

not normal , I would call the dr. LJ

Doesn't sound normal. When I woke up from the sleep and had my new pull string I don't recall feeling anything at all. The only pain came when it was removed several weeks later.

Bill D.

I had to go back to the hospital after mine was done - from horrible pain. We thought it was infected. It turned out the tube was simply too tight - the little plastic/rubber flap that 'anchors' it outside the stomach to keep it from pulling 'in' to the stomach. If it's locked down too tight, it causes internal irritation and hurts horribly.

A simple adjustment to loosen it and I was in almost immediate relief.

I have heard of other cases of this as well.

-Steve J

Same thing that Steve described happened to me too. Except that the "dude" who put it in told me that it is just in my head.....
Well it was simply to tight, once it was loosened (a few days later!) everything was fine.
However, there are also other possibilities so talk to your physician.


Markus

THANKS to all of you for your posts! It's now 10pm here in NC and Buzz has 1500 mg Oxycodone in him and is feeling a bit better, as long as he sits up and doesn't move!

If he is not remarkably improved by morning, we're off to Pinehurst to see the surgeon. And, obviously, if the pain doesn't subside, we'll make the trip before then if needed. You MEN can be SO damned stubborn!

The GOOD news is that Buzz completed the fitting for his mask and got a CT scan immediately after the PEG placement today. In addition to the IV meds given before/during surgery, I insisted that he take the Ativan, so he had no problems with the fitting...thank GOD!

I sincerely appreciate everyone here...It's great to know that I can have a panic attack about something, post, and get immediate responses from those of you who have already 'been there'...

Don't stop praying! Thanks...Lois

Get him back to the docs, Emmylou, because that kind of pain is not anywhere near normal. I took only a couple of OTC Tylenols, and was out doing very heavy yard work the next day, with no pain at all. At the most, from what I have heard from other PEG people, there should be some slight soreness.

Emmylou,

My husband also had bad pain this was caused by gas they put into the stomach. If you received discharged papers check them that was one of the items mention in when to notifying your doctor for I would call the Doctor and check with him now don't wait until tomorrow.

Emmylou,

Curious what the outcome was with your husband, the pain and the PEG. Hope all is well!

Hi Marg: Buzz slept sitting up in a chair last night...utterly refused to go to E.R., or to let me call the doctor...MEN! You can't live with 'em, and you just can't kill 'em....

I managed to get FOUR Oyxcodone in him before 1am, and he was okay, just as long as he didn't MOVE at all...

This morning he was much improved, and had a visit from the home-care nurse this afternoon, who checked the PEG site and said it looked okay.

We are scheduled for "chemo class" tomorrow afternoon, which should be interesting.

I was going to post earlier, but after responding to my pm's and e-mails, and reading the most recent posts, I didn't think Buzz' condition was anywhere near as important as some of the issues that others are having.

My heart hurts for everyone here...I get so excited when someone reaches a milestone in their treatment.

After reading John's eulogy to Lynn tonight, I just sat and cried.

Grandma always said "as long as there is breath, there is hope"...I keep repeating that...

God bless you all......

emmylue,
Keep your head up and keep going. It is not easy I know.

We all do our best with what we have. That is all we can ask of our selves.

We are cancer free until our next visit. We live for today during that time!! That is what I do. I hope this will help in some small way.

Do not think that Buzz condition is not important to us all. He is very important. If we can help him in any way, we will!! We want to help you as well.

Fighting Cancer is hard on everyone!! That means you too!! Take care and do not be afraid to email anyone for help.
bye For now..
Diane

Hi Emmyloe

Voice of experience here, I had a lot of pain with my PEG and it turned out to be an abscess infection, Yeah it "looked" okay, "maybe a little red" he said, but after fighting it for 2 weeks, they finally decided it was infected. Now this was after I'd had it in for a month, but just be aware that this is a possibility.

Kevin

Lois,

I would like to add this as well. Don't let Friday come if you still have concerns and Buzz is still in a lot of pain....the weekends are not the greatest time to get help. Voice of experience!

Also wanted to add this. Bill's belly got sores from the tape & gauze over his Peg site...we tried both paper tape(terrible) and cloth tape (better but not great.) So, I just "slid" one of those 2 X 2 drainage gauzes just under the flange at the insertion point and then used a large ace bandage wrapped all the way around front to back to hold the tube in place. Bill was so relieved to get rid of the tape and the ace bandage is soft and breathable. He now needs no gauze and just uses the ace. It allows him to move the tube tip around to different place but keep it upright and not leaking. Calls it his "bra." They are washable so get a couple to alternate. Bill keeps commenting how much more comfortable he is.

Good luck. Deb

Towards the end of using my PEG I too had a tape rash that was increasingly uncomfortable. I then started using a coaches lanyard for a whistle! Just detach the whistle but leave the clip. Slide the tube through and choke it at the narrow part. It kept the PEG tube adjustable, elevated to whatever position I needed, and allowed my skin to start healing.

Frank

Hi All! Thanks for your input and suggestions. Here's an update:

Buzz slept NONE last night, sitting upright in his lounge chair. He was still in much pain this morning, nausea, but no vomiting...I called the surgeon who did the PEG; he wanted to see Buzz at the hospital asap.

Buzz had a CT scan, and the site was cultured, just in case he picked up 'staph' or some other bug while in the hospital Monday.
Pain med, fluids and antibiotic via IV.

8 hours later back home. New prescription for Percocet, antibiotic and Prevecid. No CT scan or culture results yet!

Chemo class scheduled for today has now been re-set for tomorrow. We also learned that Buzz is to get his 1st chemo next Wednesday.

We are both exhausted, as most of you can relate!

Thanks for your thoughts and prayers!

Lois & Buzz

Lois,

So sorry to hear that you guys are having such a hard time...jeez, it just too much! I am glad you saw your doc. Buzz's nausea is probably from all the pain meds ..poor soul. Hope you both can get some sleep tonight and I will say a little prayer for you both. If he keeps having pain...pitch a hissy fit (good NC term) and get someone to do something different! He just should not be having this kind of discomfort!

Feel better Buzz...Deb

Hissy fit is also a good "Nurse from Hell" [or wife from hell as the case may be-term One of the hardest things I had to learn was to NOT let a problem fester until Friday. If it looks like a potential problem on Wednesday- get it addressed on Thursday!!!. Doctors tend to disappear for the weekends. I have some hats I can send you Lois. Amy in Oz

Has the PEG tube ever been loosened? Mine hurt quite a bit until the doctor finally loosened it.

Lois,
My husband had the PEG and never did get relief. He was always in pain. He kept it for (3) weeks and then had it removed, against Dr.'s orders. Keep increasing the pain medication which has a tendency to constipate you. Keep the bm's going or else it will cause him to be nauseated, which seems like a never ending cycle. Finally, when it was removed, it was determined it was wayyyy toooo tight - Jim WAS a fleshy kind of guy and they expected him to lose a lot of weight and that the PEG would loosen up. Well, it didn't and it was horrific. After the PEG was removed (against Dr.'s orders), but he is very headstrong and determined. His wound would not heal and kept leaking and having a lot of infection...couldn't figure it out between his oncologist/radiation Dr. and general Dr. Finally, they were sending him to a wound care specialist and Jim got desperate the day before the appointment and really started "digging" into the hole that was left from the tube.....well, he pulled out about an 1 1/2 inch piece of a stitch that was used to hold the tube in...he refused to go to the wound care Dr. and 2 days later his tummy was closed and ceased draining. He is doing fine now. He finished Radiation 2/14/07, cleared his tummy up from the PEG in June and is beginning to gain weight, get his saliva glands back.

Hang in there....Jim (my hubby) assures me that this is harder on the care givers. It was devastating for us as we married 2 weeks after he was diagnosed. Things are going great - this website kept me going as I am always reading it, not talking much, but definately on it....just remember, the Dr.'s are doing the best they can, but we each know our own bodies the best. Just listen to it and keep asking qustions!

Good Luck!
Paula and Jim