Questions...

Sorry to hear you are having so much trouble with your Peg tube.  I don't know what you are using but different drinks cause people to have problems.  My husband has been on Nutren 1.5 for 2 1/2 years and has no problems with it, but he can't use Jevity.  As far as who removes the PEG tube, it doesn't make any difference.  Our head and neck specialist removed my husband's first peg tube, he still has his 2nd and it had to be replaced and our hospice nurse did that.  

As far as the neck burns from radiation, our rad/onc gave my husband a gel or something like a medicate pad to use which was really great.  So ask your rad/onc for something.  Sorry but I don't remember the name because it has been a while ago.  Funny thing was that he had no problems the first round of radiation but the second round almost two years later burned his neck.

Wishing you peace and comfort -- Sharon

I'm so sorry you are going through all this! The burns on my neck were so bad, my skin was black and oozing. It shocked my onc. nurse.  They gave me several items to try - a silver gel, a wound cleaner, and a gel pad. I would clean the area and expose it to the air during the day. At night I'd cover up with the gel pads and sleep with a towel on my pillow. Yuck! You will be happy to know it cleared up in just a week and my skin was as smooth as a baby's bottom. ☺ Hang in there. You are in the worst time right now. It will get so much better. You are in my prayers, Kritter.

debbiejeanne said:

kritter, i just want to say

kritter, i just want to say i'm praying for things to get much better for you.  hang in there.

God bless you,

dj

I believe the burn cream script is called Silvadene. Matt can tell you for sure. As for your feeding tube, no need to rush having it taken out until you are confident you can take in enough calories by mouth. Just speak up if you want to leave it in awhile longer. I was given Jevity and ended up in the hospital twice, just couldn't tolerate it.  Ended up with Ensure Plus at a slow rate. Strictly using the tube and the Ensure Plus which has 350 calories, I gained back a few pounds with 6 cans a day and maintain with 5 cans. I wish I could do 6 everyday but can't. Some days I only get 4 in. If you use a drip or kangaroo pump, be sure not to lay flat when feeding.

Burn cream script is called Silvadene. That is what they used on my son and it prevente infection as well.

Sorry about the stomach problems. If nothing else do ice chips just to keep swallowing. I liked slushy or slurpee's just to get some flavor. Chream of chicken soup was best for me. I had a NG tube and I got sick at 60cc and got into big arguement with hospital nutrisionist [ I won] mine went just passed the stomach into the intestines do to my GURD and that Jevity and I did not get along. You had problems with ensure, so watch out for milk products, like milkshakes which is a great source of calories. Just keep trying anything even popsicles if needed. Lose the PEG when YOU are ready, and eating on your own.

Bill

Aww, Kritter. You're having so many problems I just want to give you a hug! I'm glad the Reglan is helping. It helped me get through some rough days, too. Hopefully you'll be able to eat more food as time goes on. The only things that tasted bad to me were water and citrus products. The flavor was indescribably horrid! Lukewarm savory foods were more palatable to me, so I ate canned ravioli, soup, mac and cheese, and such. Warmed up white bread taken with lots of water was okay. It's funny, but all the food I could tolerate was the stuff I avoided in the past! More hints- Green beans and carrots don't have much flavor if you overcook them a bit. If you pour a glass of water and let it sit for a few hours, the chlorine, sulfur, and other chemicals out gas and then the water tastes okay. Milk products seem to be a problem. They just sit there and make me feel sick even now. So many supplements are milk-based. Keep trying different foods. What tastes foul one day might be fine the next. You're in my prayers.

Beth

MrsBD said:

Questions

Aww, Kritter. You're having so many problems I just want to give you a hug! I'm glad the Reglan is helping. It helped me get through some rough days, too. Hopefully you'll be able to eat more food as time goes on. The only things that tasted bad to me were water and citrus products. The flavor was indescribably horrid! Lukewarm savory foods were more palatable to me, so I ate canned ravioli, soup, mac and cheese, and such. Warmed up white bread taken with lots of water was okay. It's funny, but all the food I could tolerate was the stuff I avoided in the past! More hints- Green beans and carrots don't have much flavor if you overcook them a bit. If you pour a glass of water and let it sit for a few hours, the chlorine, sulfur, and other chemicals out gas and then the water tastes okay. Milk products seem to be a problem. They just sit there and make me feel sick even now. So many supplements are milk-based. Keep trying different foods. What tastes foul one day might be fine the next. You're in my prayers.

Beth

I couldn't take the two cans of jevity they wanted me to take.But as I found they wanted more liquid in me I took in more water.But I also had to take jevity more often also think it was like every 4 hrs day and nite.

Sorry Kritter but I didn't suffer the same symptoms as you are going through and I am sorry to hear your having a rough time.

I did have a redneck but only to the extent I wanted to listen to Jeff Foxworthy and his redneck jokes, I never had any cracking eccept for my ussual wise cracking.

All kidding aside I did lose 92 pounds but I could afford to you however don't seem to have it to lose. Maybe less at a time and more feedings. Other than my weird humor I really wish I could help out more.

Heal on it does get better.

      Jeff