PEG tube question

TracyLynn72
TracyLynn72 Member Posts: 839
in Head and Neck Cancer #1

 

I'm not having any trouble with my PEG except for the tape rash.  It's really the most comfortable when I have it taped upward...near my bra.  Hanging free or tucked into my waistband is very uncomfortable, so I've been taping.  I bought the kind that isn't supposed to irritate your skin.  Well, I have nasty tape rash and it's starting to bleed and scab.  I took a ribbed, men's tank top and cut strips across it to use to tie it around me like a bandage and keep the tube in place.  Any other suggestions?  The tank tops strips are working pretty well, but maybe there is something easier that I just don't know about?

 

Also, we leave for the beach tomorrow.  I know not to lay out, swim and use tons of sunscreen.  Anything else you can suggest?  

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I fought the darn thing

    for a long time, then found some spandex/cotton camisoles at Amazon.  They make them with and without the shelf bra (having never been blessed with a bustline, I could wear the one with a shelf bra and get away with it).  They are comfortable, and stretchy, and hold the tube nice and close to your body with no tape at all.  I'd just slip the camisole on, and then arrange the tube to where it was comfy.  They are very inexpensive, and come in great colors.

    http://www.amazon.com/gp/product/B008LG00CI/ref=oh_details_o04_s00_i01?ie=UTF8&psc=1

    You listed everything you need for a day at the beach except a WIDE brimmed hat....honestly, you do not want to tempt the sun at all....I spent a whole 15 minutes one time, and my face turned bright red and swelled up....I was miserable....the oncologist said it was radiation recall (or something like that).

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #3
    Solution

    Hi Tracy,

    One of the guys staying at Hope Lodge in Baltimore turned me on to this. I bought two and they've been worth every penny (not that they're expensive). You have to hand wash and dry but that's the only negative. While I still use tape, I use this most of the time. 

    I highly recommend the product.

    Tube Support

    "T"

     

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #4
    Ya the tape rash really bothered me.

    I had to give up on the tape.  I wear sports bras and I just pulled the tube up and tucked it into the front mid-point of my bra, from below.

    Deb 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    fishmanpa said:

    Solution

    Hi Tracy,

    One of the guys staying at Hope Lodge in Baltimore turned me on to this. I bought two and they've been worth every penny (not that they're expensive). You have to hand wash and dry but that's the only negative. While I still use tape, I use this most of the time. 

    I highly recommend the product.

    Tube Support

    "T"

     

    That's the same idea, T

    as the stretchy camisole.....having the whole tube held entirely stationary against my body, was the most comfortable for me...and it served a dual purpose.....bra and tube holder.....plus it was a cute accessory to my wardrobe.  I bought a bunch of colors, and would wear them on the outside, below my sweater or tee....

    p

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    fishmanpa said:

    Solution

    Hi Tracy,

    One of the guys staying at Hope Lodge in Baltimore turned me on to this. I bought two and they've been worth every penny (not that they're expensive). You have to hand wash and dry but that's the only negative. While I still use tape, I use this most of the time. 

    I highly recommend the product.

    Tube Support

    "T"

     

    That's the same idea, T

    as the stretchy camisole.....having the whole tube held entirely stationary against my body, was the most comfortable for me...and it served a dual purpose.....bra and tube holder.....plus it was a cute accessory to my wardrobe.  I bought a bunch of colors, and would wear them on the outside, below my sweater or tee....

    p

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #7
    phrannie51 said:

    That's the same idea, T

    as the stretchy camisole.....having the whole tube held entirely stationary against my body, was the most comfortable for me...and it served a dual purpose.....bra and tube holder.....plus it was a cute accessory to my wardrobe.  I bought a bunch of colors, and would wear them on the outside, below my sweater or tee....

    p

    Hmmmm

    P,

    Somehow I don't think stretchy camisoles would do justice to my amazing physique although they would definitely be a compliment to my good taste in clothing ;)~

    "T"

  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
    fishmanpa said:

    Hmmmm

    P,

    Somehow I don't think stretchy camisoles would do justice to my amazing physique although they would definitely be a compliment to my good taste in clothing ;)~

    "T"

    LOLOLOL T....

    The mental picture of you in a stretchy camisole has me giggling right out loud.

    p

  • yensid683
    yensid683 Member Posts: 349
    #9
    Tape Rash

    I had a PEG as well and had challenges with tape rash irritation from the button.

    My oncologist gave me a box of something called 'Spandage', a net like bandage product much like a very open weave tee-shirt.  It was THE SOLUTION for the tape issues. It is a long tube of open weave material that you cut to length and wear like a shirt without sleeves.  I would cut a strip about 12" long and it would fit well, hold the tube in place and keep it from causing irritation.  The only down side is that if you get it wet (sweat) it gets 'narrow' and the tube starts to slip out of the net and you need to replace it.  I would replace it every few days and the one box lasted for several months.

    You can Google it and find medical supply outlets, or even ask your doctor.  I was lucky that mine had great experience with the tube solution. 

    For button irritation, a product call 'calmoseptin' worked.  Much like Desitin, a thick insulating cream that slightly numbed the skin and reduced the irritation.  Gets messy though.

    For the beach - stay out of the sun, or at least keep the areas being treated with radiation out of the sun.  I rigged up a wide brim hat with a bandana that acted like an burnoose that sheilded my neck and face.  beach umbrella works too. 

    I had access to a backyard pool and would sit under the umbrella and dangle my feet in the water, even though it was shade and not blisteringly hot, I couldn't take the heat for very long. 

    Peter

  • michdjp
    michdjp Member Posts: 220
    #10
    Paper tape

    My dad had the same problem but we tried paper tape and it Really helped.  It is really thin tape you can just tear apart and does not pull your skin or leave any excess glue.  I believe it is called paper tape.  We would ask for extra rolls at the hospital.  

    I hope this helps.

    michelle

  • Laralyn
    Laralyn Member Posts: 532
    #11
    Ouch, yes!

    One discovery during treatments was that I'm allergic to tape adhesive. We thought I wasn't healing well after the PEG tube insertion... then discovered it was a really nasty reaction to the tape. Paper tape was a bit better but still caused a reaction after a day or so. There is tape that's more like band-aids and that could go almost two days without causing problems, but even that eventually made the skin bright red and painful.

    I ended up doing a couple different things. I got something like this G-tube holder that I wore when I was going to be out for a while. I tended to wear it early on, when I was still getting used to the tube. Before that (and sometimes after, since the G-tube holder was kind of itchy), I would take an ace bandage and wrap it around my waist to hold the PEG tube. Later on, I ended up just leaving it loose and tucking it into my pants. I wore a loose tank top to bed, which stopped the tube from potentially getting stuck underneath me and pulled out.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    Hi Tracy

     

    I am a PEG tuber for life person and had the same problems when I first started. Tape marks all over my body and hurting and a mess every time trying to eat, I said there has to be a better way but found none. So while working one day I was putting a jump drive in my computer and seen it had a small snap attached to it. I puller it off and put it on a strap I had in my office then put it around my neck and attached it to the end of the PEG tube. Wow no more tape it hangs there and I can unsnap it to feed and then snap it right back on and go back to work again.

     

    Having to untape and almost undress myself each time to eat and then tape myself back again was a real pain and a big mess sometimes. Now I can eat out with the boys again with hardly any problems except people who wonder why I have a syringe and putting stuff in a tube. I have my life back again and that is what matters most.. I am not sure if something like this would work for you, I will take a picture later and post it on my expression if you want to see. God be with you both in your life journey with Him.

     

     

     

    God Bless

    Hondo

     

     

     

     

     

     

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #13
    Y'all are the best!!

    We are at the beach and I've used the sports bra/bathing suit top trick :)

  • sin9775
    sin9775 Member Posts: 199 Member
    #14
    Hondo said:

    Hi Tracy

     

    I am a PEG tuber for life person and had the same problems when I first started. Tape marks all over my body and hurting and a mess every time trying to eat, I said there has to be a better way but found none. So while working one day I was putting a jump drive in my computer and seen it had a small snap attached to it. I puller it off and put it on a strap I had in my office then put it around my neck and attached it to the end of the PEG tube. Wow no more tape it hangs there and I can unsnap it to feed and then snap it right back on and go back to work again.

     

    Having to untape and almost undress myself each time to eat and then tape myself back again was a real pain and a big mess sometimes. Now I can eat out with the boys again with hardly any problems except people who wonder why I have a syringe and putting stuff in a tube. I have my life back again and that is what matters most.. I am not sure if something like this would work for you, I will take a picture later and post it on my expression if you want to see. God be with you both in your life journey with Him.

     

     

     

    God Bless

    Hondo

     

     

     

     

     

     

    PEG

    What a great tip!  Definitely sharing this with my brother.  Thanks, Hondo!

    Shawn

  • Ingrid K
    Ingrid K Member Posts: 813
    #15
    TracyLynn72 said:

    Y'all are the best!!

    We are at the beach and I've used the sports bra/bathing suit top trick :)

    shoelaces

    Tracy, what I used were white shoelaces.....cheap and they dry pretty quick.

    I tied the tube (valve part) to the shoelaces and then tied the shoelaces into a "necklace" and could adjust the length to hide it inside my bathing suit....just hid the valve between the boobs and then I sat by the edge of the community pool and just put my feet in. 

    It helped me feel somewhat normal.

  • robswife87
    robswife87 Member Posts: 209
    #16
    fishmanpa said:

    Solution

    Hi Tracy,

    One of the guys staying at Hope Lodge in Baltimore turned me on to this. I bought two and they've been worth every penny (not that they're expensive). You have to hand wash and dry but that's the only negative. While I still use tape, I use this most of the time. 

    I highly recommend the product.

    Tube Support

    "T"

     

    Made one

    I made a wrap around for Rob with t-shirt material and velcro. I sewed teh velcro on horizontily so he was able to adjust for comfort and weight loss or gain.

    He also looped tape around the tube so it looked lide a tag and pinned to inside of shirt at times. The tape really started to get irritating

  • Hondo
    Hondo Member Posts: 6,636 Member
    #17
    PEG tube attachment

    Hi everyone I took some pictures of my PEG tube attachment just in case you want to see. It works very well if you are someone on the go and don’t have a lot of time to deal with Tapping your PEG tube.

     

    http://csn.cancer.org/user/100386/expressions

     

     

    God Bless

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #18
    Ingrid K said:

    shoelaces

    Tracy, what I used were white shoelaces.....cheap and they dry pretty quick.

    I tied the tube (valve part) to the shoelaces and then tied the shoelaces into a "necklace" and could adjust the length to hide it inside my bathing suit....just hid the valve between the boobs and then I sat by the edge of the community pool and just put my feet in. 

    It helped me feel somewhat normal.

    I giggled when I read where

    you hid the valve, Ingrid....I couldn't hide an ant with what I've got....I would have appeared to have three boobs (of equal size)....ha!

    p

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #19
    phrannie51 said:

    I giggled when I read where

    you hid the valve, Ingrid....I couldn't hide an ant with what I've got....I would have appeared to have three boobs (of equal size)....ha!

    p

    p, u crack me up.  ur humor

    p, u crack me up.  ur humor is awesome!  we can always use a good laugh on this site and we can always count on one from u.   :0)

    dj

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #20
    Hondo said:

    PEG tube attachment

    Hi everyone I took some pictures of my PEG tube attachment just in case you want to see. It works very well if you are someone on the go and don’t have a lot of time to deal with Tapping your PEG tube.

     

    http://csn.cancer.org/user/100386/expressions

     

     

    God Bless

     

    hondo, unfortunately the pics

    hondo, unfortunately the pics were way too small 4 me2 c with my less then perfect eyesight.  thank u 4 sharing tho, i'm sure most have better eyesight then me.   :0(

    dj

  • George_Baltimore
    George_Baltimore Member Posts: 303
    #21
    debbiejeanne said:

    hondo, unfortunately the pics

    hondo, unfortunately the pics were way too small 4 me2 c with my less then perfect eyesight.  thank u 4 sharing tho, i'm sure most have better eyesight then me.   :0(

    dj

    I've never used tape

    When I had the long tube, I used to curl it up and use twist ties to fasten it to one of the holes on the flange near the body.  Now that I have the shorter, very soft tube, I just let it hang.  As long as you're wearing a loose shirt, nobody can see it.

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