Peg tube Bleeding

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Comments

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #22
    donfoo said:

    Oh hell no.

    Is THAT what they look like? It looks huge. HOw the hell do you cover that thing up? I'm thinking maybe there is a small stub that stays and all the rrest of that crap comes off. If that is what is stuck on my stomach all the time I just erased the PEG item from my dinner order.

    Donfoo,
    Now that I am done
    Donfoo,

    Now that I am done laughing out loud, I think that looks bigger cause its on a baby. Mine is probably 3 or 4 inches in diameter and the tube is a little long(don't know why it has to be so long). Hopefully you'll never need one. If they tell you it doesn't hurt.. bulls...! It is not anywhere near a lot of pain we dealt/deal with during treaments, but its very sore when first done and getting used to that disk is to say the least ANNOYING, the little disk dig in, I knew I could spin it, but apparently I can move it out a little, I am taking PHrannies advice and trying to move a litlle each day. The alternative in my case would've been death(the 2nd time). I am a 12yr suvivour, in my 13th year, I developed Dyshalgia(which is I cannot swallow and food goes into lungs) so I would get no nutrition orally and keep getting pnuemonia and eventually it would take me, so no brainer 2nd tube! I am working with new speech therapist starting Friday and hopefully this will not be perminate. So know what your facing ad do what u have to to LIVE!

    Rachel
  • Ingrid K
    Ingrid K Member Posts: 813
    #23
    donfoo said:

    Oh hell no.

    Is THAT what they look like? It looks huge. HOw the hell do you cover that thing up? I'm thinking maybe there is a small stub that stays and all the rrest of that crap comes off. If that is what is stuck on my stomach all the time I just erased the PEG item from my dinner order.

    Yikes...

    DON

    Don't panic...the picture above is shown on an INFANT.....so it does look huge.  Sorry about that !  Didn't mean to scare you.  It really is not that big on an adult.... I mean you will know it's there, but you get used to it pretty quick.   Get some packages of new shoelaces so you can tie the end of the tube up and hang on the shoelaces that you can wear as a necklace....worked for me, and even could use in the shower and then just changed out between 2 sets so one could dry out.

  • donfoo
    donfoo Member Posts: 1,773 Member
    #24
    wolfen said:

    Don

    Hubby's is like the one in the above picture. It all stays together. He has a closet full of pullover shirts which are temporarily useless, so I went to Goodwill on Saturday to pick up several nice, clean button up shirts which will cover it appropriately without causing discomfort. We're using Ingrid's shoestring method or Hypafix tape to keep it out of the way when not in use.

    Luv,

    Wolfen

    Thanks all

    I am glad to have tracked this post as it really has changed my mind on PEGging up early. I am going to put PEG as the backup method for hydration and nutrition and be as creative as possible to find all manners of getting stuff down my throat. For every day I get by without it is one less day that I might have to have it sticking out of me. v This decision will make my surgeon happy too; he has been really pushing me to keep the swallow function work as most as possible.  Of course, I will PEG up in seconds if my hydration or nuttrion fall below required levels.

    Thank you CSN, it is a great place to get the down and dirty for surviving the various treatment regimens and host of side effects. don 

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #25
    donfoo said:

    Thanks all

    I am glad to have tracked this post as it really has changed my mind on PEGging up early. I am going to put PEG as the backup method for hydration and nutrition and be as creative as possible to find all manners of getting stuff down my throat. For every day I get by without it is one less day that I might have to have it sticking out of me. v This decision will make my surgeon happy too; he has been really pushing me to keep the swallow function work as most as possible.  Of course, I will PEG up in seconds if my hydration or nuttrion fall below required levels.

    Thank you CSN, it is a great place to get the down and dirty for surviving the various treatment regimens and host of side effects. don 

    For Don

    Be aware that it is possible to wait too long to get the PEG.  I was okay, some three to four weeks into my treatment, and the installation was easily accomplished.  For a fellow patient in my support group; by the time he sought the PEG, his throat was so inflamed that it was impossible for him to be intubated for the surgical procedure.   He had a port previously installed, and had to finish out his treatment surviving on the more costly and challenging nutrition via TPN.  (total parenteral nutrition)

    Deb

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #26
    donfoo said:

    Thanks all

    I am glad to have tracked this post as it really has changed my mind on PEGging up early. I am going to put PEG as the backup method for hydration and nutrition and be as creative as possible to find all manners of getting stuff down my throat. For every day I get by without it is one less day that I might have to have it sticking out of me. v This decision will make my surgeon happy too; he has been really pushing me to keep the swallow function work as most as possible.  Of course, I will PEG up in seconds if my hydration or nuttrion fall below required levels.

    Thank you CSN, it is a great place to get the down and dirty for surviving the various treatment regimens and host of side effects. don 

    Another note on getting it early....

    tho I'm sure you can pour water and Ensure down it right away after insertion, I wouldn't have been able to stand all the lifting and turning it to put stuff in it for the first 3 days after it was put in.  Every movement caused a cramp much like labor pains (no kidding!!)...it would start, then cresendo into into a peak over 45 to 60 seconds....hold that peak, then subside.....only to return a couple minutes later.  They came less often after 24 hours, but it continued to happen for 3 days.  Then it was fine.

    p

  • Pam M
    Pam M Member Posts: 2,196
    #27
    wolfen said:

    Don

    Hubby's is like the one in the above picture. It all stays together. He has a closet full of pullover shirts which are temporarily useless, so I went to Goodwill on Saturday to pick up several nice, clean button up shirts which will cover it appropriately without causing discomfort. We're using Ingrid's shoestring method or Hypafix tape to keep it out of the way when not in use.

    Luv,

    Wolfen

    Holding tube up - another tip

    I used an ID badge clip to hold my tube up, to keep it more secure without so much tape.  The badge clip snapped around near my tube end, and then I clipped the little "toothy" end of the badge clip to my bra or undershirt.  I paid like four bucks for a multipack of clips, I think at Walmart, I believe.  I really appreciated them.  Oh - and undershirts - I almost always wore a "wife-beater" - form-fitting - this helped things stay in place, too. 10 ID Badge Clips - Clear Vinyl Strap - Badge Holders

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #28
    donfoo said:

    Thanks all

    I am glad to have tracked this post as it really has changed my mind on PEGging up early. I am going to put PEG as the backup method for hydration and nutrition and be as creative as possible to find all manners of getting stuff down my throat. For every day I get by without it is one less day that I might have to have it sticking out of me. v This decision will make my surgeon happy too; he has been really pushing me to keep the swallow function work as most as possible.  Of course, I will PEG up in seconds if my hydration or nuttrion fall below required levels.

    Thank you CSN, it is a great place to get the down and dirty for surviving the various treatment regimens and host of side effects. don 

    Better safe than sorry!

    This is the only thing that members of my team disagree with. My surgeon is saying I'll be fine without one. On the flip side, based on the difficulty I've had with my throat and eating after my surgery (surgery on Feb 7th...first solid food yesterday...fish and veggies), my radiation oncolgist is wanting a PEG put in as a precaution. 

    Reading this thread made me think twice but I'd rather have the inconvenience of a tube sticking out of my stomach, a little discomfort and bleeding, than put myself in a situation where I need to be hospitalized for lack of hydration/nutrition. Even after treatment, I'll keep it as a backup in case I can't get food down.

    After what I went through with the surgery, and knowing that 3-4 weeks my throat will feel the same or worse is causing me some major concern. If the last month is any indication of what rads will be doing to me, I'd rather be safe than sorry because I'm not pulling any punches, it was absolutely miserable pain. Every swallow was a challenge. 

    "T"

  • phrannie51
    phrannie51 Member Posts: 4,716
    #29
    fishmanpa said:

    Better safe than sorry!

    This is the only thing that members of my team disagree with. My surgeon is saying I'll be fine without one. On the flip side, based on the difficulty I've had with my throat and eating after my surgery (surgery on Feb 7th...first solid food yesterday...fish and veggies), my radiation oncolgist is wanting a PEG put in as a precaution. 

    Reading this thread made me think twice but I'd rather have the inconvenience of a tube sticking out of my stomach, a little discomfort and bleeding, than put myself in a situation where I need to be hospitalized for lack of hydration/nutrition. Even after treatment, I'll keep it as a backup in case I can't get food down.

    After what I went through with the surgery, and knowing that 3-4 weeks my throat will feel the same or worse is causing me some major concern. If the last month is any indication of what rads will be doing to me, I'd rather be safe than sorry because I'm not pulling any punches, it was absolutely miserable pain. Every swallow was a challenge. 

    "T"

    T...since this is something your team

    players disagree on, I'd be saying "Thanks Dr. Surgeon, but I'm going along with Dr. RO...he gets my vote.".... I think you're making a good decision.  I know some Dr.'s are afraid that a person will become very dependent on the tube, to the point they refuse to swallow during treatment...however, I don't hear about many of them (in this forum or other HNC forums I'm part of).  Like a few others on here, my Dr. made it his business to put the fear of gawd in me about losing the swallow ability, and what that loss would entail after treatment was over.  No matter how much it hurt, I managed to figure out something that could be swallowed everyday, and I think most of us worked on it daily.  I wonder how many times these Dr.'s have to eat (and swallow) their words, when they advise against a tube.

    p 

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #30
    phrannie51 said:

    T...since this is something your team

    players disagree on, I'd be saying "Thanks Dr. Surgeon, but I'm going along with Dr. RO...he gets my vote.".... I think you're making a good decision.  I know some Dr.'s are afraid that a person will become very dependent on the tube, to the point they refuse to swallow during treatment...however, I don't hear about many of them (in this forum or other HNC forums I'm part of).  Like a few others on here, my Dr. made it his business to put the fear of gawd in me about losing the swallow ability, and what that loss would entail after treatment was over.  No matter how much it hurt, I managed to figure out something that could be swallowed everyday, and I think most of us worked on it daily.  I wonder how many times these Dr.'s have to eat (and swallow) their words, when they advise against a tube.

    p 

    It's My Body

    P,

    Ultimately, it's my decision. I wrote my surgeon as I had a few concerns about treatment. The scar on my neck is healing nicely and I've been treating both sides of my neck with a recommeded cream (Special Care Cream) to help condition my skin for the radiation but I'm concerned the radiation will quell the healing of the incision and cause it to produce scar tissue. Also, my swallowing ability has been compromised. It's getting better but with treatment, I am concerned about it getting back to normal. He's confident I will be 100% by the time rads start kicking in. All I know is that it's going to suck ~lol~

    I can't put into words how difficult the last month has been. I just wasn't prepared for what the surgery would do to me. I heard the doctors but it still caught me totally off guard. My left arm and shoulder have been compromised more than I imagined. It's still very weak. I do the PT I was shown but it's going to be a while until I get it back, if I ever do. You can see a significand difference in the trapezoid muscles on my left side. Up until a couple of days ago swallowing was still very painful. I had to take my pain meds just to get some soft foods down and even at that, it was painful. The couple of weeks right after surgery were so bad that it literally exhausted me trying to swallow water.  

    All that being said, it's my body and my decision. Unless the doctors refuse to do it, I'm having the PEG put in. 

    "T"

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #31
    fishmanpa said:

    Better safe than sorry!

    This is the only thing that members of my team disagree with. My surgeon is saying I'll be fine without one. On the flip side, based on the difficulty I've had with my throat and eating after my surgery (surgery on Feb 7th...first solid food yesterday...fish and veggies), my radiation oncolgist is wanting a PEG put in as a precaution. 

    Reading this thread made me think twice but I'd rather have the inconvenience of a tube sticking out of my stomach, a little discomfort and bleeding, than put myself in a situation where I need to be hospitalized for lack of hydration/nutrition. Even after treatment, I'll keep it as a backup in case I can't get food down.

    After what I went through with the surgery, and knowing that 3-4 weeks my throat will feel the same or worse is causing me some major concern. If the last month is any indication of what rads will be doing to me, I'd rather be safe than sorry because I'm not pulling any punches, it was absolutely miserable pain. Every swallow was a challenge. 

    "T"

    T,
    You know reading all of
    T,

    You know reading all of you going through this now and poor Donfoo being very concerned about it. When I went through treatment, I didn't have option with my surgeon, on preliminary look and see surgery, it went in. I resnted it immensely(and gastro docs there messed up, and that's what caused all the pain) but I don't recall ever needing it because my mouth was so sore I couldn't eat because with treatment I developed "food adversion" much like a pregnant woman. I saw, smelled or saw food and threw up, includng the tube food. Eventually I wasn't eating enough and gettung fluids constantly, my mom finally put gatorade in and I held that down, so I lived on gatorade and Lipton chicken soup. Now also when I was treared it wasn't normal proto call to involve speech therapy(wish there was now), however, I have been eating, chewing and swallowing for 12yrs and still lost my ability to swallow. I would tell all of you along with speech, see physical therapist to work your neck(my muscles have hardened so much on lft side to mk up for rt, that is part of problem) and also when done treatment and recovered some start looking into cancer neck message, so you keep it relaxed and don't later in life loose your swallow and movement like me. I don't know if it will prevent the love rad therapy constantly pays as times passes, but if I had known then, I would have done what I just said!

    Man I can talk huh? Keep pushing on T, Donfoo, and everyone fighting and "living after "slim fast"


    Rachel
  • donfoo
    donfoo Member Posts: 1,773 Member
    #32
    donfoo said:

    Thanks all

    I am glad to have tracked this post as it really has changed my mind on PEGging up early. I am going to put PEG as the backup method for hydration and nutrition and be as creative as possible to find all manners of getting stuff down my throat. For every day I get by without it is one less day that I might have to have it sticking out of me. v This decision will make my surgeon happy too; he has been really pushing me to keep the swallow function work as most as possible.  Of course, I will PEG up in seconds if my hydration or nuttrion fall below required levels.

    Thank you CSN, it is a great place to get the down and dirty for surviving the various treatment regimens and host of side effects. don 

    may be way off base but...

    I was 100% in the PEG up early camp and I do respect GREATLY the experiences shared here but still think there are many other options if one thinks out of the box a bit more to find relief from the pain associated with swallowing. Of course I dun't know shiite as Ricky Ricardo would say but I don't hear anyone talking about using the can of the stuff, your ENT uses to numb you up when doing an endoscopy or the dentist using the spray stuff to numb you up. 

    Like I say I dun't know anything. For example, the area needing the numbing may not even be in your mouth or in an area just too far to get to. If too far, then add some extention to the spray can to reach further down. Change the tip so it sprays omni-directionally rather than in a stream. 

    I'm thinking of a dozen other ways to alleviate the pain associated with swallowing. I only need relief for 10 minutes time window to get the food down.

     

    Don

    http:beatdown.cognacom.com (personal blog - Please join)

     

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