Questions...

Kritter

Hello all,

 

I have an issue and would like some of your input or ideas. This Miss Peggy is being a real B*itch sorry for the language. But I can not keep any liquid or food at all in my stomach. I developed a ( Delayed stomach ) or Gastroparesis.

 

I can not stand the taste of any food or drink in my mouth it is so horrible I have to spit it out. Only thing I can get down is cool tea or water. And then it often comes up. I am only supposed to have 50 CC every two hours. If I go over that it comes up. I am really losing weight I don't need to be.

 

I have an appt with Doc who put it in on the 21st. but since I am 6 days out of treatment my RAD/ONC wants to take it out next week. I see him in the morning and GI doc later that afternoon. Should I wait and see what the GI doc wants to do or let the RAD/ONC pull it?

 

Also any suggestions on what I might try to get to stay in my stomach and keep me from losing any more weight. I started at 156, now at 120. Doesn't seem that much . I am only 5 ft tall. But worries my family and the Doc;s. 

 

Plus any idea on what to do for these burns on my neck as they over fried me. I have cracks and bleeding all around my neck. I am trying Eucerin.

 

Thanks so much!.. Prayers and Hugs... Kritter

Ladylacy

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

MarineE5

A few questions

Kritter,

I am sorry to hear you are having some issues with your PEG tube. 1st, anything that I put thru the tube was at room temperature. Like Sharon's husband, I used the Nutren 1.5 cans. I used the gravity method which was after I flushed my PEG before my feeding, I removed the plunger from the Syringe. I then attached the Syringe to my PEG hose and held it about the middle of my chest. I would then already have 2 cans of Nutren ready and slowly pour each can in and adjust the speed of the flow by raising or lowering the Syringe.

I would pace it so that it took 10-15 minutes for each can. I would then flush my PEG again with luke warm water as per instructions from my Nurses. If we push the nutrition or water in to fast we can cause stomach cramps,etc. Once I was able to swallow some water, I made sure it was room temperature as well. I had the Tube for several months as I had Base of Tongue cancer and had part of my tongue removed, took some time before I was allowed to try and eat anything.

For my neck I used Keri-Lotion, unscented

I hope that you find a solution soon.

My Best to You and Everyone Here

MrsBD

Burns

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

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

hwt

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

Kritter

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.

CivilMatt

feel better

Kritter,

I had that awful feel and taste for 7 months, but I loved my smoothies and I was always sampling  things.  After 7 months eating normally slowly returned.

Cool tea and water are a good start just keep trying things, the same goes for the PEG, try different things.

I never heard of a rad onc popping a PEG?

I had very bad neck burn and used Silver Sulfadiazine Cream with great success.

Good luck,

Matt  

wmc

Burn cream script is called Silvadene

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

Kritter

Thanks

Thanks for all the replies... 

My neck looks better today I drowned it in Eucerin and wrapped it for the night and a lot of the dead skin came off this afternoon when I unwrapped my neck. Easier to turn it now. My neck is not nearly as black now and it is getting better, I just have to have or find patience. My face is so soft where the healing finished up. Like y'all said like a baby's bottom. 

 

My issue is: Nothing they try will stay in my stomach, or have me try. I have a delayed stomach that causes food to sit in my stomach too long until it goes bad and I have to drain it out or I throw up, one way or the other it wants out. I am on Reglan now for a few days and it does seem to help. I actually kept the drink I had for lunch, but made sure it was 50 CC. 

Can't tolerate, ensure, ensure plus, ensure complete, boost, and liquid breakfast drink, the list goes on...But having a little luck today with Osmolite 1.5, will keep trying. Home health nurse coming out tomorrow to see about putting me on some type of machine to feed me. A very slow drip. Personally I wish they would pull it so I would either have to eat what I can't stand or keep losing. They have talked about removing PEG from my stomach and placing it in my small intestines, sounds too painful to me. Will just go one day at a time.

 

Prayers and Hugs !! Kritter

MrsBD

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

Hondo

Kritter said:

Thanks

Thanks for all the replies... 

My neck looks better today I drowned it in Eucerin and wrapped it for the night and a lot of the dead skin came off this afternoon when I unwrapped my neck. Easier to turn it now. My neck is not nearly as black now and it is getting better, I just have to have or find patience. My face is so soft where the healing finished up. Like y'all said like a baby's bottom. 

 

My issue is: Nothing they try will stay in my stomach, or have me try. I have a delayed stomach that causes food to sit in my stomach too long until it goes bad and I have to drain it out or I throw up, one way or the other it wants out. I am on Reglan now for a few days and it does seem to help. I actually kept the drink I had for lunch, but made sure it was 50 CC. 

Can't tolerate, ensure, ensure plus, ensure complete, boost, and liquid breakfast drink, the list goes on...But having a little luck today with Osmolite 1.5, will keep trying. Home health nurse coming out tomorrow to see about putting me on some type of machine to feed me. A very slow drip. Personally I wish they would pull it so I would either have to eat what I can't stand or keep losing. They have talked about removing PEG from my stomach and placing it in my small intestines, sounds too painful to me. Will just go one day at a time.

 

Prayers and Hugs !! Kritter

Milk

Ensure, Ensure plus, Ensure Complete, Boost, and liquid Breakfast drink. I had the same problem with all of them and found that if I cut them with water I was able to handle them better. I don’t use any of them now unless I am traveling and need a quick pick me up. Hope you get better

Tim Hondo

thennies61

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

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.

hwt

thennies61 said:

I couldn't take the two cans

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.

Pump

Sounds like they may set you up with a kangaroo pump. If so, make sure you pay attention on how to thread the tubing, it kind of goes in upside down. Do not know if I could have figured it out on my own. After you do it once, it is easy. 

Duggie88

Hi Kritter

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

phrannie51

Here's what I'm thinking....

the main point, you NEED nutrition.....there is no way around that, no matter how they rig you up.  Is the slow stomach caused by pain meds?  Just curious, because we had another member Laralyn, who could keep nothing down.....but hers was caused by her stomach's reaction to the pain meds.

Anyway.....getting the other kind of tube "sounds" painful....and it probably does hurt for a couple of days.....but it may be the ticket to getting yourself truly fed, and feeling better.....Long term misery sounds worse to me than short term pain....

p

Kritter

Thanks !!!

Thank everyone for all the helpful hints. So far yesterday afternoon and today I have been putting baby food in my PEG and it is staying in and seems to be doing okay. Thought I would try that since it is for tender little tummies.  Still not taking anything in by mouth except water and tea. 

Home health nurse was here today and agreed it might just work. I see the Doc's next week, so will take advice and just try to do what I can that seems to work. 

Prayers and Hugs .. Kritter

Ruben and Jude

Kritter said:

Thanks !!!

Thank everyone for all the helpful hints. So far yesterday afternoon and today I have been putting baby food in my PEG and it is staying in and seems to be doing okay. Thought I would try that since it is for tender little tummies.  Still not taking anything in by mouth except water and tea. 

Home health nurse was here today and agreed it might just work. I see the Doc's next week, so will take advice and just try to do what I can that seems to work. 

Prayers and Hugs .. Kritter

Don't take out the PEG tube

Don't take out the PEG tube until you are able to eat ALL of your meals by mouth for at least one month straight. No matter what your doc's tell you. If you haven't seen a nutritionist, you need to. 

Also, you can use Noxema, yep, the one at the local drug store, for your radiation skin burns. It soothes and repairs.