PEG Issue

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

Hello all, I hope everyone doing as well as they can be. I was wondering how long this PEG tube should hurt? Well not really hurt but be aggrevating. It has some leakage around it yet, is that normal? I had it put in on the 9th of this month and saw the Doc that put it in on Tuesday of this week. I thought it was too tight and he pulled on it and bounced it up and down like a yo-yo and said it's too loose. So he tightened it some, said I had a bit of infection, and gave me some anti-biotics. I hate to bother them if this is normal.

I am still eating on my own, or trying too. Still losing weight even though I eat. When I first wake up it's like I don't even know it's there and as soon as I eat or drink it starts feeling like it's burning, hard to describe the feeling. Or when I do a lot of walking, it really smarts!

Prayers and Hugs ! 

Kritter

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    PEG 101

    Kritter,

    Neither of my 2 PEGs hurt just being there and hanging around.  So I would say it should start to feel neutral.  Mine was never infected, but crud would seep out and dry up around the insertion point, which took a little clean up, but no big deal.

    I believe even if you are not using it you still need to flush with water daily.

    Matt

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #3
    Tube

    if you get a bit sore around the insertion hole it will smart. I put a little 'baby bum' cream on with a cottonwool bud then wrap a thin piece of gauge around the tube so I have a protection between the stomach and fastener. It's hard to judge the tension on the fastener as if it's too tight it sticks into your flesh and too loose it leaks and makes you sore. It's only by experimenting you can get it right. I have had one  nearly a year now I had it changed the other week and was uncomfortable for a couple of weeks, then it settled down. 

  • lornal
    lornal Member Posts: 428
    #4
    PEG woes

    I had a Peg from Sept 30 (13) to Mid march of this year.

    I do thing backwards.  I get the PEG because I can no longer eat (or even talk for that matter) - and THEN I get the cancer.  Okay - maybe it was the cancer all along, but no one knew.

    Anyway - I did have issues from day one.  The nasuea was bad in the hospital, I stayed an extra night (I think it was more fear of eating like this the rest of my life that caused the nasea rather than the tube itself).

    Leakage - at least that is what I thought it was - as it looked and smell like the formula I used.  Staph infection, granulation tissue - I had it all.

    But, since I hadn't been eating nor drinking, and was so dehydrated - as much as I hated the tube - I was "eating" again.  I had been on pain killers before, but was able to get off them after a week.  Dehydration takes its toll and makes everything hur. I had more energy - and was just plain happier - albeit, with a damn tube sticking out my belly.   I even thought to myself - Damn, I wish I had this when I had my cancer treatment in 2007.  I would have recovered so much faster. 

    The tube was loose, the tube was tight.  I could never get it right.  The first we couldn't keep tight enough.  It did have a clamp though.  The 2nd didn't have a clamp - now that makes for a big mess if you hit it just wrong.  And it was so stiff - I hated it.  No covering that thing up.    Had it changed again, and then ended up in the ER because of the pain, and so much blood. 

    This was going to be a long rest of my life if this kept up. 

    To make a way to long story short - My tube is gone.  We had our ups and downs with it.  I think I had 5 or 6 total - maybe more.  Never found one that really worked well with me.  I might have had cancer again, but at least that put an end in sight to having the tube.

    And, then when it was removed...Well, great to have it gone, but the stoma never closed up.  The final procedure 2 months later - closed it, and that was the last I heard from it (well, except for the scar).

    Kritter - it will end!  It will stop hurting you so much, and maybe it will stop giving you grief.  But, be comforted that you have way to eat and hydrate, and don't need to stress that you might lose to much weight.  Start using it now for some nutrition.  Your body will become accustomed to it, at least to the point that having it is better than the alternative.

    Lorna

    2007 & 2014

     

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    I wonder if you tried

    using a little triple antibiotic cream under the bumper to help the anitbiotics the Dr. gave you.  I always found the darn thing agrivating until I found a way to hold it close to my body and it wasn't moving around when I was active.  It's a piercing...but unlike your ears, it's 1/4 inch (or more around), and through muscle, fat, and the stomach wall....I know I'm weird, but I kept comparing it to my ears and allowed it about a month to heal, since my ears took 10 days to quit leaking, quick hurting when I'd sleep.

    Also, I had to find a placement direction.  It hurt when I'd tuck it in my bra....up position hurt....it hurt when I tucked it in my pants, so down position hurt, also.  Right side position is what worked for me, and why that stretchy camisole was a god-send.

    An infection would slow down the healing, for sure.

    p

  • Kritter
    Kritter Member Posts: 147
    #6
    CivilMatt said:

    PEG 101

    Kritter,

    Neither of my 2 PEGs hurt just being there and hanging around.  So I would say it should start to feel neutral.  Mine was never infected, but crud would seep out and dry up around the insertion point, which took a little clean up, but no big deal.

    I believe even if you are not using it you still need to flush with water daily.

    Matt

    Hi Matt

    Thanks for the friend invite. I wish I was like you and this thing didn't drive me crazy. I decided to tape it down to the left instead of the right and it feels some better now. I am flushing it three times a day, and the ooze that seeps out is sort of greenish and burns my skin a little. I am going call Doc tomorrow and see what they say. Still not sure why they put it in so early. Thanks for all the suggestions you send my way. 

    Prayers and Hugs !

    Kritter

  • Kritter
    Kritter Member Posts: 147
    #7
    jackflash22 said:

    Tube

    if you get a bit sore around the insertion hole it will smart. I put a little 'baby bum' cream on with a cottonwool bud then wrap a thin piece of gauge around the tube so I have a protection between the stomach and fastener. It's hard to judge the tension on the fastener as if it's too tight it sticks into your flesh and too loose it leaks and makes you sore. It's only by experimenting you can get it right. I have had one  nearly a year now I had it changed the other week and was uncomfortable for a couple of weeks, then it settled down. 

    This tube

    Okay great, I was told not to put anything around it like that, but going to give it a try anyway. I am wondering if it is the plastic itself, as I have an allergy to so many things as I get older. Even have to use paper tape as have band aid allergy. I will try the suggestions you sent along and thank you so much for your help. Are you going to have to keep yours a lot longer? 

    Prayers and Hugs,

    Kritter

  • Kritter
    Kritter Member Posts: 147
    #8
    lornal said:

    PEG woes

    I had a Peg from Sept 30 (13) to Mid march of this year.

    I do thing backwards.  I get the PEG because I can no longer eat (or even talk for that matter) - and THEN I get the cancer.  Okay - maybe it was the cancer all along, but no one knew.

    Anyway - I did have issues from day one.  The nasuea was bad in the hospital, I stayed an extra night (I think it was more fear of eating like this the rest of my life that caused the nasea rather than the tube itself).

    Leakage - at least that is what I thought it was - as it looked and smell like the formula I used.  Staph infection, granulation tissue - I had it all.

    But, since I hadn't been eating nor drinking, and was so dehydrated - as much as I hated the tube - I was "eating" again.  I had been on pain killers before, but was able to get off them after a week.  Dehydration takes its toll and makes everything hur. I had more energy - and was just plain happier - albeit, with a damn tube sticking out my belly.   I even thought to myself - Damn, I wish I had this when I had my cancer treatment in 2007.  I would have recovered so much faster. 

    The tube was loose, the tube was tight.  I could never get it right.  The first we couldn't keep tight enough.  It did have a clamp though.  The 2nd didn't have a clamp - now that makes for a big mess if you hit it just wrong.  And it was so stiff - I hated it.  No covering that thing up.    Had it changed again, and then ended up in the ER because of the pain, and so much blood. 

    This was going to be a long rest of my life if this kept up. 

    To make a way to long story short - My tube is gone.  We had our ups and downs with it.  I think I had 5 or 6 total - maybe more.  Never found one that really worked well with me.  I might have had cancer again, but at least that put an end in sight to having the tube.

    And, then when it was removed...Well, great to have it gone, but the stoma never closed up.  The final procedure 2 months later - closed it, and that was the last I heard from it (well, except for the scar).

    Kritter - it will end!  It will stop hurting you so much, and maybe it will stop giving you grief.  But, be comforted that you have way to eat and hydrate, and don't need to stress that you might lose to much weight.  Start using it now for some nutrition.  Your body will become accustomed to it, at least to the point that having it is better than the alternative.

    Lorna

    2007 & 2014

     

     

    Hi Lorna

    Wow sounds like you have really been through a lot. Praying things get better for you with each day. 

    I was told I can get mne out once treatment stops and all clear. They told me no one would even know I had it, but how are you supposed to cover this thing up when it sticks out so far. I have used it a couple times now, when they first pulled my lower teeth, glad I had it then. Maybe I am just being a whimp, but that is so unlike me. I am trying to gain some weight as Doctors say I will lose. Ready to get this behind me so i can get back to doing things I enjoy. 

    Prayers and Hugs,

    Kritter

  • Kritter
    Kritter Member Posts: 147
    #9
    phrannie51 said:

    I wonder if you tried

    using a little triple antibiotic cream under the bumper to help the anitbiotics the Dr. gave you.  I always found the darn thing agrivating until I found a way to hold it close to my body and it wasn't moving around when I was active.  It's a piercing...but unlike your ears, it's 1/4 inch (or more around), and through muscle, fat, and the stomach wall....I know I'm weird, but I kept comparing it to my ears and allowed it about a month to heal, since my ears took 10 days to quit leaking, quick hurting when I'd sleep.

    Also, I had to find a placement direction.  It hurt when I'd tuck it in my bra....up position hurt....it hurt when I tucked it in my pants, so down position hurt, also.  Right side position is what worked for me, and why that stretchy camisole was a god-send.

    An infection would slow down the healing, for sure.

    p

    Hi Phrannie

    Read this earlier and decided to tape it to the left and put on a tighter top, and it did help a little. Also tonight I used some spray antibiotic ( Neosporin ) on the gauze pad. 

    You are right in comparing it to pierced ears, a few years back I had the cartlidge on top section of ears pierced and it took along time to heal. 

    Can't wait to get my tops and see if it helps, right now trying a new placement to the left side. So far so good. but then I am sitting still. 

    Thank you so much for all the tips you send.. 

    Prayers and Hugs,

    Kritter

  • lornal
    lornal Member Posts: 428
    #10
    Kritter said:

    Hi Phrannie

    Read this earlier and decided to tape it to the left and put on a tighter top, and it did help a little. Also tonight I used some spray antibiotic ( Neosporin ) on the gauze pad. 

    You are right in comparing it to pierced ears, a few years back I had the cartlidge on top section of ears pierced and it took along time to heal. 

    Can't wait to get my tops and see if it helps, right now trying a new placement to the left side. So far so good. but then I am sitting still. 

    Thank you so much for all the tips you send.. 

    Prayers and Hugs,

    Kritter

    Tops

    The tighter tops helped.  Fall is coming - Camisols work great - Phrannie told me about those.  I have quite the collection now, and I didn't need to use the tape with them.

    Regarding the Neosporin - if you have used before w/ no issue, then no problem.  But, if you haven't used before, then try polysporin.  There is something in neosporin that many follks are allergic to.

    Lorna

  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi Kritter

    I am on my 4th PEG tube and have been on them for 2 ½ years now, will have to have one the rest of my life. The first tube they use seems like it always has some problems, I know with me I always had a rash or redness around the Stoma. But when I had a rash around the stoma I would use Desitin dipper rash cream and man it make it feel so good The worst part was when the doctor had to replace it, he had to pull it out and that hurt like hell but only for a few seconds. Then he gave me one with a balloon on the end and all the pain and rash went away. Right now I am using a Mic-Key Low profile tube, it has been the best but it also has problems. I hope you can get you doctor to help you with the hurting or if he needs sometimes you need to replace them. All the best to you

     

    Tim Hondo

  • jim and i
    jim and i Member Posts: 1,788 Member
    #12
    Not sure I would use ointments

    I kind of cringe with all the ointment suggestions. Every doctor or nurse I talked to said Big no no. Jim always cleaned his with mild soap and water and dried it good before putting the gauze between his skin and disc. He never taped his up, just let it hangdown. He only cleaned it once a day. His always oozed but never hurt. As for the green, not good at all. I think the instructions say call doc immediately if it is green or yellow. If you are loosing weight now you probably are not getting enough calories. Ask about it. The weight loss gets worse with treatment.

    Praying things get better and the pain goes away.

    Debbie

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #13
    Kritter, i don't recall mine

    Kritter, i don't recall mine ever hurting but i think others here have had a few problems.  I'd call the doc if the pain isn't gone in 2 or 3 days.  someone else who had pain with theirs may chime in and give you better information.  good luck, let us know what works.

    God bless you,

    dj

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