Got my peg in Wed/thought there wouldn't be any discomfort by this point. Does the peg tube ever become just a part of you, so you're not too aware of it? Also, best flushing advice? It was very awkward/I'm sure I can find a better way.

Susan,

I never did get fully adjusted to that dang tube hanging out of me! But, I did figure out ways to minimize the inconvenience. My surgeon recommended making a tab out of cloth tape and using a safety pin to pin it to my bra, which worked really well for me. I know others wrapped it down with a wide Ace Bandage but I never had success with that technique. I also tended to wear shirts that were slightly too large so no strange bulges were visible.

As far as the flushing, what are you doing now? I'm not sure I remember what I did, exactly, but there are plenty of other folks who can probably help you out!

- Margaret

Thanks, Margaret, I think I'll try the bra technique. Glad you've been cancer free! Susan

Susan,

I've never gotten use to the tube, I just got a new one that is low profile so I find myself looking for the darn tube hanging from under my shirt!LOL I use to let my tube just hang and wear a slightly bigger and longer shirt. I never liked taping or pinning it up but that's just preference.

How are you flushing currently? I flush with two syringe full (60ml each) of warm water both pre and post feeding. It will get easier to handle with practice, I can do alot of stuff one handed now!LOL

Hi Susan,
I put a 6" wide ace bandage on my Dad and it works good too! It tucks it away and is easy to get to when we have to do his feedings. Just a thought! I also saw specific things that they also use for feeding tubes at the pharmacy we use. Perhaps you have a home health pharmacy that will work with you to help you find something that will make it an easier process. Good luck!

Susan

Thanks, Susan/looks like your dad is in for a similar treatment (except I'm taking cisplatin). I'm in my third week/don't have much appetite or taste but so far just discomfort, not pain in mouth. Good luck with your dad, and yes I am thankful I got the peg tube.

Susan, I have learned lots of little tricks over the years of having the tube. Even with having the tube, still always keep eating and drinking so you dont lose that ability. Its very important to swallow everyday and also stretch your mouth open wide to prevent trismus.

I dont flush with large amounts of water but I do flush several times per day. I use aprox 30ml water before and after taking meds. I also flush with 60ml after Ive done my feeding.

I always use a drain sponge with antibiotic cream or siladene cream around the peg opening.

Best of luck with your treatments

Hey Christine,
Just curious about the use of the antibiotic cream around the PEG opening. That is the first time I have heard of doing that. I put an antibiotic cream on my Dad's skin under the bumper (Is that the right word?)that holds the tube in place. What is the advantage of putting it on the opening?
I was also wondering if anyone has any words of wisdom as to some possible drinks that seemed to be soothing. I am having a tough time finding anything that seems to be palatable to my Dad. He tells me everything tastes awful or it hurts too much. I can't seem to get him to take anything by mouth at this point. Cold beverages hurt as do warm. Pop irritates and juices are too acidic. Even water is a battle. I have tried to get him to drink the unflavored Aloe juice...he insists it's "poison". I tried it and it has absolutely no taste!! They gave him some kind of "Swish" and he hates that as well!! Are there any other things I should be trying? I am worrying that he is going to have a tough time regaining his swallowing once this is over.

Thanks for your help! Hope you are feeling a tad bit better!

Susan

Maxine, I put cream on my stomach, around where the tube comes out. I have a tiny bit of ganulation there and the drain sponge sticks to it. So by putting the antibiotic or silvadine cream there, it prevents the gauze from sticking and the granulation doesnt hurt. The drain sponge also soaks up any leakage that comes from the feedings.

For a soothing drink, try chocolate milk or yoohoo. I drank yoohoo thru out my rad treatments and it soothed my sore throat. If your father refuses to drink he will lose the ability to swallow. This is something very very important!!!!! He must drink something every day to keep those muscles working.

If something has no taste to you it doesnt mean to him it is the same. His mouth has gone thru a tremendous battle, leaving him sore and delicate tissue scarred. My taste and sense of smell became increased to where I was super sensitive to everything. One grain of pepper would be somthing a normal person wouldnt notice but to someone who has endured what your dad has, it is definetly very noticeable. Stay away from juice, its too acidic. Soda will hurt and burn his mouth.

Have your dad use the magic mouthwash and swish it in his mouth then spit it out. This will temporarily numb his sore mouth. Sure it tastes bad but we gotta do those things. He should also be rinsing his mouth several times per day with a baking soda mixture.

16oz water, 1 tsp baking soda, 1 tsp salt (if it burns reduce the salt or omit it)

After the rinses, then he should attempt to drink something. Even a few sips a few times per day will be enough to keep those muscles active. If he is not taking much by mouth that means he shoudl be having lots of water in his peg.

Hope I was able to help you Maxine.

Dear Christine,
Never thought about his taste buds being hyper-sensitive! That is a big possibility with him! Good thought. I did offer chocolate milk to him and he said it tasted sour. So there is that hyper sensitivity thought again. I know he is extremely sensitive to smells right now.

I have been trying to be hyper vigilant in regards to his swallowing and rinsing his mouth! But he fights me at every turn! I did make a rinse with 1qt water w/ 1/2t. baking soda and 1/2t. salt. (That was the solution the Dr. office came up with.) He tells me it gags him and makes the nausea worse and sometimes makes him vomit. This has been going on for the past week and a half. Actually, once the phlegm thing set in is when he got worse about rinsing...when he needs it the most. So I am getting a little worried about the swallowing. I encourage it at every feeding. He gets 3 Ensure and 3 Carnation VHC per day. When I do these I put 6-7 ounces of water in his PEG each time to make certain he is hydrated. Along with 2X per day of his medications in which I put another 5-6 ounces of water as well. The bad thing is when he brings it all back up and there goes all that nutrition and water. The poor guy. So I have been trying to space the rinsing out a little farther away from the feedings. But even then we have the gag reflex going.

We have 9 more radiation treatments and then, of course, the wait! I feel good about his recovery...it's now just getting him through these next few weeks! Trying to get him to do what needs to be done is such a damn battle! The feedings I can do. He has FINALLY realized that he is not going to win that battle! But getting him to drink and rinse is a whole different problem. The Dr.'s the nurses and I have all spoke to him about it. But it is like the one thing he can control at this point and he just digs his heels in and fights us on it! I tell him that I understand and can sympathize...but we are all truly trying to help him heal. The one thing I think might help was I put the rinse mixture in a bottle next to his chair and a basin there as well, and told him that when he feels like it to use the rinse when he can. I'm hoping by putting it in his control it might help. That was yesterday...we shall see what today brings.

As for the PEG...I'm so crazy! I thought you were talking about where you open the tube to put the food in! That's why I was wondering about it! Sorry about that! He is getting that granulation thing as well and I do the same as you. It does keep the pads from sticking to it.

Thanks for the info Christine. I'll try the Yahoo and see if that is any more palatable to him.

You amaze me that you get on here and help so many others when you have to be feeling so bad yourself! Have I told you that you AMAZE ME??? Thanks for all you are doing! Have a good day!

Gentle Hugs,
Susan