Peg and i are a fightin' again..

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Kritter
Kritter Member Posts: 147
in Head and Neck Cancer #1

Hi all. haven't been on for a while now, been busy with my greenhouse.. but it seems Miss Peg just can't behave herself..she seems to like the color Red!  I wonder if anyone else had leakage after 3 weeks of getting her put in. I am using a gauze sponge under it. I am still eating and drinking on my own yet.  I was told by a nurse it might be my diet.. as I drink cokes.. I know.. but I don't drink coffee.. so I switched to sweet tea.. ( in the south we like a bit of tea with our sugar ) only to find out that's a no-no as cancer loves sugar.. so now I'm drinking bitter brown water.. UGH!.. and off of the Gumbo.. and Boudin.. anything spicy.. of course tex-mex out now as well. Hasn't seemed to help. So I was wondering if anyone else had trouble with theirs ? Doc's advice.. keep it clean.. rotate it..and do not use any salves, ointments hydrogen peroxide, so I am asking for advice from the * real professionals* on here.  

Also found out as of today I am Stage IV with neck disease, T4aN1M0. Got my mask today and that was fun.. seems my mouth is not big enough to place the plastic devices in the tried not even  the smallest one they had on hand ..so they decided to make one.. with tongue depressor sticks.. at that point the Doctor walked in and said.... you have a very small mouth.. I smiled and told him to go tell my hubby out in the waiting room.. as he would argue the point.. MRI on Friday and then I guess they will form a plan of action.

I noticed while I was off we had some new ones join.. I just would like to tell them they came to the right place as there are very caring and informative people on here who made me feel right at home when I joined. 

Prayers and Hugs ! 

Kritter

 

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
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    Glad to see you

    checking in, Kritter.....tho I'm glad to hear you're busy doing something you really like doing. 

    I can't remember how long I had leakage....and the leakage I did have wasn't blood....it was pinkish.  My Dr. had me using a mix of 1/2 peroxide and 1/2 saline (about a teaspoon each) on a Q-tip from the get go, so I don't understand why your Doc doesn't want you to use anything but gauze. 

    Keep that sense of humor.....it comes in handy as treatment commences.

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
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    Kritter vs PEG, round 2

    Kritter,

    Sorry you are having PEG problems.  Mine only wept a little bit, nothing red or major.

    I have read many papers for and against sugar and find no concern (in my case).  By the way, one of my bright spots during my dark days of highly reduced taste buds was the ability to taste sweet tea and sweet corn, go figure.

    Good luck,

    Matt

  • patricke
    patricke Member Posts: 570
    #4
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    LEAKY PEG

    Hey Kritter,

    Myne didn't leak as much as it seeped for the first couple of years or more, so I always had a piece of gauze taped around it.  The seepage wasn't that great so it was not really a problem for me.  It takes a little time for the tissue around the tube to form a tight seal around it, as it is for so many beast related issues in the recovery stage.  Speaking of coke intake, has someone mentioned to you that it is a good idea to flush your tube out with a coke or other carbonated beverage containing citric acid, which helps to keep it clean; I learned that from my home healthcare nurse.  I used about a half of a can of diet coke or mountain dew on a daily basis.  Hang in there Kritter, and remember to take it one day, hour, minute, second, or nanosecond at a time, as needed for getting through the challenging times.  Prayers and hugs com'in your way.

    PATRICK 

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #5
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    PEG probs'

    I had a bit of leakage with my old PEG, now I have a new one no problem. It felt uncomfortable at first because the hole was smaller than the pipe, the tube is thicker as it has the pipe to the balloon inside it.i didn't get a drippy leak just a build up of crud around the site and I hated the smell of it. I've been told to just use soap and water to wash it. I did at first get a small sore patch but cleared it up with some aqua cream that usually is used for babies nappy rash. I did get told not to use cream but as it works every time I would still do it. My old PEG should have lasted at least 3 years so I think the cream may have been the cause it perished and split.i hope yours settles down ASAP it's a nuisance when you get problems with something that's suppose to help you.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
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    I forgot about the sugar

    When I brought the sugar thing up to my Oncologist, he smiled and said.....if it has calories, eat it....drink it.....All the tube food they offer us during treatment is packed with sugar.....it has lots of other things, but sugar is a big ingredient.  I don't see drinking 10 glasses of sweetened tea a day.....but there's no reason you shouldn't have a couple.  There may come a time, that sweet tea is what you crave.....they may tell you to get decaff so you won't dehydrate.....but they'll tell you to drink all that you want just to stay hydrated.

    I'm still eating ice cream everyday.....it keeps my weight up, and the Oncologist is all for it. :)

    p

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
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    I have now had my tube for 7 months

    and the seapage is apparently coming to an end right about now.   I still wear gauze at the site, and am very careful about care around the stoma.  The leak itself isn't a problem, the skin irritation which results can me.  Oh, and that comment about sugar?  It's ok to mix folk  lore with medical science if we chose, just understand there is a difference.  There isn't a shred of evidence that sugar causes, or accelerates cancer.  What are carbohydrates broken down to by our metablism anyway?

     

    best

     

    pat

  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
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    Hi Kritter

    I had a lot of the same problems with my first PEG as well, it would get raw and bleed and like you the doc would tell me to just keep it clean and use peroxide but just made it hurt more and did not do anything to help. One of the nurse who was in there told me to try Desitin diaper rash cream on it and all I can say most of my problems went away within a few days. Also the type of tube makes a big different, so far the best PEG tube I ever used and still using is the Mic-Key low profile button. I don’t remember it is there until it is time to eat, it made a big change in my life.

    All the best to Ms. Peggy

    Tim Hondo

  • lornal
    lornal Member Posts: 428
    #9
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    peggy

    I had a PEG for 6 months.  And it leaked the whole time - and then some.  I had granualation tissue. I had to have gauze put under it the whole time, and changed it 4-5 times a day.   I was really worried - because at the time - it was going to be there forever. 

    When it came out, it never closed competely.  Grape juice in, grape juice out.  After 2 months, the GI doc had to go and clamp it shut.  Of course, the clamp wouldn't go down my newly reconstructed esophagus without a couple of snips.  Thankfully - they healed up nicely.

    Yours might be a pain in the gut now, but it will end.  As other said - keep it clean, keep it covered. 

    Lorna 2007 & 2014

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
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    Kritter, the only problem Peg

    Kritter, the only problem Peg gave me was she wanted to come out, twice!  Finally the last time they couldn't get her back in so they left out.  Yay me.  I hope you get this all taken care of and Peg causes no more trouble.

    God bless,

    dj

  • Kritter
    Kritter Member Posts: 147
    #11
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    Thanks for the tips

    Hello and thank y'all so much for the replies. The leakage I have is slightly reddish, and looks like for lack of better words. * snot *. Reminds me of a little kids runny nose. Saw the Doc that put it in today and he just shrugged ... again.. so I asked if he ever had one or * would like to have one * ! ~ smile~ I know,, bad of me.. but it got results. He ordered me in some antibiotics, to see if that will help. 

    Doc is afraid if I put too much salve or anything else it may get down into the area and do more harm than good. He is adamant about me not using hydrogen peroxide, as it kills good cells, once the area is cleaned the first time. I have heard that before from several nurses.

    Actually I can't taste or smell anymore. So the iced tea thing is more of a mind thing with me, I know what it tasted like without sugar. They don't want me to load up on sugar as it is not a matter of if but when I turn diabetic, I am already showing signs of it. So I guess that is why they told me sugar was a no-no for me in large quantities. I am trying to do the best I can to keep my weight up, but if they take my french fries.. we are going to fight !

    I am hoping when tumor starts shrinking I can taste and smell again. I have heard coke is good to clean a Peg tube, but I still like drinking a can a day if i can get away with it. 

    I did pick up some calmoseptine and starting to use it to see if it helps. It smarts so much, but then if I would behave and not over do it might help as well. I just never have been one to sit still. I have gauze placed around it, and change and clean it several times a day. Should know in a few days if better or not.. Again Thank you to all who gave me tips and words of encouragement.

    Prayers and Hugs! 

    Kritter

  • lornal
    lornal Member Posts: 428
    #12
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    Kritter said:

    Thanks for the tips

    Hello and thank y'all so much for the replies. The leakage I have is slightly reddish, and looks like for lack of better words. * snot *. Reminds me of a little kids runny nose. Saw the Doc that put it in today and he just shrugged ... again.. so I asked if he ever had one or * would like to have one * ! ~ smile~ I know,, bad of me.. but it got results. He ordered me in some antibiotics, to see if that will help. 

    Doc is afraid if I put too much salve or anything else it may get down into the area and do more harm than good. He is adamant about me not using hydrogen peroxide, as it kills good cells, once the area is cleaned the first time. I have heard that before from several nurses.

    Actually I can't taste or smell anymore. So the iced tea thing is more of a mind thing with me, I know what it tasted like without sugar. They don't want me to load up on sugar as it is not a matter of if but when I turn diabetic, I am already showing signs of it. So I guess that is why they told me sugar was a no-no for me in large quantities. I am trying to do the best I can to keep my weight up, but if they take my french fries.. we are going to fight !

    I am hoping when tumor starts shrinking I can taste and smell again. I have heard coke is good to clean a Peg tube, but I still like drinking a can a day if i can get away with it. 

    I did pick up some calmoseptine and starting to use it to see if it helps. It smarts so much, but then if I would behave and not over do it might help as well. I just never have been one to sit still. I have gauze placed around it, and change and clean it several times a day. Should know in a few days if better or not.. Again Thank you to all who gave me tips and words of encouragement.

    Prayers and Hugs! 

    Kritter

    Calories

    I you need to pack in the calories, and can tolerate it - try whole milk.  I spent a couple weeks on whole chocolate milk -- until I couldn't stand the taste anymore (because of chemo - not because of the real taste)

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #13
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    Peg

    My husband's first PEG tube was in for about 10 months and he had no problems with it.  It was removed and he was able to eat again, albeit slowly since he is a laryngectomy.  Then in May 2012 he had to have another PEG due to a 2nd primary at the cervical of his esophagus.  Well last night we got the scare of our lives.  He was in the bathroom and comes out to me and shows me where his PEG tube was almost split in two beyond the part that pushes up against your stomach.  Now he had been having a little leakage and that was unusual for him.  We were both scared.  Had to call hospice right away.  All I can say is thank you hospice.  The nurse came out at 9 pm and had to change it right then.  She was amazing.  My husband was very scared but she was able to do it with a minimum of discomfort for him.  She was amazed that it had lasted as long as it did -- almost 2 1/2 years and when she pulled it out the tube looked black and the balloon was completely gone.  We were amazed that she could change it so easy and right in his reclining chair.   He has to have the feeding tube because he cannot swallow anything.  So far so good.

    All I can say is that hospice was amazing and being a caregiver is scary especially when you can't do anything to help your loved one. 

    Sharon

  • Kritter
    Kritter Member Posts: 147
    #14
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    Ladylacy said:

    Peg

    My husband's first PEG tube was in for about 10 months and he had no problems with it.  It was removed and he was able to eat again, albeit slowly since he is a laryngectomy.  Then in May 2012 he had to have another PEG due to a 2nd primary at the cervical of his esophagus.  Well last night we got the scare of our lives.  He was in the bathroom and comes out to me and shows me where his PEG tube was almost split in two beyond the part that pushes up against your stomach.  Now he had been having a little leakage and that was unusual for him.  We were both scared.  Had to call hospice right away.  All I can say is thank you hospice.  The nurse came out at 9 pm and had to change it right then.  She was amazing.  My husband was very scared but she was able to do it with a minimum of discomfort for him.  She was amazed that it had lasted as long as it did -- almost 2 1/2 years and when she pulled it out the tube looked black and the balloon was completely gone.  We were amazed that she could change it so easy and right in his reclining chair.   He has to have the feeding tube because he cannot swallow anything.  So far so good.

    All I can say is that hospice was amazing and being a caregiver is scary especially when you can't do anything to help your loved one. 

    Sharon

    Sharon

    I agree, those hospice nurses are angels in disguise!. I had them help me when I was a cregiver for my Mom -in-law.. they were so amazing and sweet. 

    I am sorry you were both so scared but it turned out okay. I can honestly say now that .. being a caregiver is just as scary as being the patient as I have been on both sides. Being a caregiver to my own Mama and my husbands Mom and now I am a cancer patient. 

    I wish you both the best and prayers that everything goes as smoothly as it can..

    Prayers and Hugs! 

    Kritter

  • jim and i
    jim and i Member Posts: 1,788 Member
    #15
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    Good to hear from you

    Good to hear from you Kritter, although not the reason for hearing. Jim had his peg for over 3 years. It leaked all the time around the insertion point. Sometimes more than otheres. The doctor gave you the right advice. Just have to clean and replace the gauze daily. I know a lot of people put salves and peroxide on there's but then you are adding moisture which breeds bacteria. Keep it clean and dry! Best advice we got.

    Debbie

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