Ok I am a whimp!

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

Been off for a few days with pain from this PEG they put in. Is this normal?   I am having spasms that run into my back, from around my rib cage. I am not on any pain meds. Only tylenol. They put it in on Tuesday afternoon and it just seems to get worse. I called the Doc office and was told he was out of the office and they made me a follow up appt. for Tuesday, when he gets back.

No matter how I place it.. it hurts.. and I can generally take a lot of pain.  As I was told this thing shouldn't hurt. I didn't want this.. I thought I could tough it out, but the Doc's explained that since I am already losing weight and I haven't started treatment yet they thought it necessary. 

Any ideas?  

Thanks!! Kritter

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    try a recliner?

    Critter,

    To be honest my first PEG hurt like heck when I tried to use it, but neither the first or second PEG hurt while hanging around.  I can understand spams, but think terrible pain (if it continues) is not likely normal.  When all was well hardly knew it was there, except when rolling around in bed.

    If no relief can be found call the doctor again.  After all I had one horrible PEG.

    Matt

  • Kritter
    Kritter Member Posts: 147
    #3
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    CivilMatt said:

    try a recliner?

    Critter,

    To be honest my first PEG hurt like heck when I tried to use it, but neither the first or second PEG hurt while hanging around.  I can understand spams, but think terrible pain (if it continues) is not likely normal.  When all was well hardly knew it was there, except when rolling around in bed.

    If no relief can be found call the doctor again.  After all I had one horrible PEG.

    Matt

    Matt,

    Sorry you had to deal with this type of pain as well. Recliner.. does help some. I am having one moved into my bedroom tomorrow. May go sleep in the one in my hubby's bedroom tonight if pain worse. This one hurts all the time. Even when I try to tape it different ways or let it loose. I may go to the E.R. tomorrow. Wish I didn't need this thing.  Thanks for your reply!

  • ahollie
    ahollie Member Posts: 84
    #4
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    my husband had no pain at all

    my husband had no pain at all when he got his...i would worry something may be wrong...please go have them check it out...

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
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    Well.....this means I'm a wimp, too!

    my PEG hurt so bad the first two days, the surgeon who put in my Port gave me a scan, thinking that my liver may have been nicked.....only later did we find out that the spasms weren't out of the norm (I can only equate the spasms from the PEG with labor pains....since they'd cresendo and then fade, only to return if I moved or  90 seconds had passed, which ever came first).

    You'll be 4 days out tomorrow.....if it's hurting this bad, then yes....go to the ER......I don't think you should be in this much pain for this long.

    p

  • patricke
    patricke Member Posts: 570
    #6
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    PEG TUBE PAIN

    Hey Kritter,

    I never had any pain with my PEG.  If your doc has a back up for emergencies while he is out, I would give him/her a call if it was me experiencing the kind of pain that you are describing.  I hope that you get it resolved quickly.

    PATRICK

  • corleone
    corleone Member Posts: 312 Member
    #7
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    I also experienced severe

    I also experienced severe pain the first 2-3 days after insertion. They were felt like intense cramping, pretty much like Phrannie described. After that the pain was much less intense and only when the tube was caught in a weird position, or the stomach pulled it in (literally).

  • Laralyn
    Laralyn Member Posts: 532
    #8
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    Your PEG may be different,

    Your PEG may be different, but mine had two parts holding it in place: one inside my stomach, and the other on the outside, against the skin. If those two are super tight, it can cause some pain. It might be something to ask your doctor about. I also discovered that I'm really allergic to medical tape. What I thought was some kind of pain from the PEG procedure was actually a severe reaction to the medical tape that cause a LOT of pain. 

    So there are couple simple things to ask your doctor about. Hope it helps!

  • Anonymous7/6/2023
    Anonymous7/6/2023 Member Posts: 176
    #9
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    I had the worst pain of my

    I had the worst pain of my life from the PEG. I had it fitted on the Monday afternoon. By the Tuesday evening I had been blue-lighted into hospital. I just cannot describe the pain. After 4 days of ultrasounds they could find nothing wrong. After about a week it had subsided. I still have no idea what happened, what went wrong. But they told me it wouldn't hurt. I was made to feel like I was pretending.

    This was not at my normal cancer hospital, New Cross in Wolverhampton.

    I was taken to Stafford Hospital by the ambulance - where I was treated like a malingerer. Even though I had cancer and was only 5 weeks out of my surgery.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
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    Kritter

     

     

    Is the stoma site red and do you see any blood or white stuff that looks like pus. Sometimes if the doctor tighten the stoma too tight you might get pain, with me it was infection and had to do some antibiotic to clear it up. I am on my 5ft PEG tube and it is the best of all the ones I used. It is a Mic-Key low profile button and it is the first one I had that does not leak or hurt in any way. Because there is no tube sticking out it makes me feel almost normal again. Take care if it keeps hurting demand to see your doctor or a doctor on call.

     

    Tim Hondo

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #11
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    Mine hurt...

    well, was very sore for about a week.  It was tender, and the thought of turning it made me almost sick.  Mine had little "feet" under the rubber part on the outside and they were digging into my skin.  I had them removed (just like stitches...no biggie) and it immediately felt better.  I told them that those things had dug into my skin and they kept telling me to keep it clean, take Ibuprofen if needed, etc..  Well, they left scars.  Around the scar from where the PEG came through are little scars from those darn "feet".  If it is still hurting you, GO BACK and make them check it for you.  No wimps here...we are ALL tough!!! Cool

  • jcortney
    jcortney Member Posts: 503
    #12
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    Mine too

    I found relief in making sure it was taped down tight so it couldn't move.  I used a 4X4 square  dressing and taped it down really well.  All the pain went away.

    J.

  • wmc
    wmc Member Posts: 1,804
    #13
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    Ok I am a wimp! NOPE..........You Have..

    First, you have a sence of humor, but you're not a wimp. Pain can bring down anyone. Rember just how painful a very small grain of sand in the bottom of a shoe hurts like there is no tomorrow. But it was only a grain of sand. Pain is pain and the only differance is: is it a #1 or #10 on the scale. Never had a PEG [ I married a PEG, going on 39 years]so I can't help, but the others have. Just wanted to add my $.02, and say I hope you feel better.

    Bill

  • Kritter
    Kritter Member Posts: 147
    #14
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    Thanks Everyone....

    Thanks to all who wrote and yep it did feel like labor pains.. only I think * natural* labor pain would have felt better. * smile *  I went to the emergency care center they have close to me and the Doc there at first just thought I was just there to get pain pills. I told him if that was all he was going to say .. I'll take it out myself.. I told him.. I didn't want just pain pills I wanted him to look at it and see what was wrong. Hubby told him * she can be a little pill when she needs to be, so you better check her * .. He then decided to take an elastic band and wrap it very tightly around me.. I told him.. didn't think we should do that, but he persisted. Gave me some pain meds and I said let's just go. 

    Got home I unwrapped it, and had help to rewrap under it.. That does help.. I don't know why..but it really does. Still painfull but I can walk around better now. Seeing my Gas Doc ( as I call him) on Tuesday. Until then, I think I can tolerate it. 

    So sorry y'all have had pain with this as well, mine has the little feet under it also, and they do dig in. Feels better when I first get up and then as soon as I drink or eat.. stomach swells and pain is back.

    Thanks to all of you again. It made me feel so much better knowing I was not alone, even if I didn't answer right away.. I was reading the helpful hints.

    Prayers and Hugs!

    Kritter 

  • ratface
    ratface Member Posts: 1,337 Member
    #15
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    Try loosening it some

    There are sevearl different types of pegs as has been mentioned. If this description dose not fit your circumstance then disregard it. Generally there is a tube and two bumpers, one bumper outside and one inside as mentioned. Picture two donuts with a tube running  thru them.  One donut on either side. The donuts will revolve around the tube. They may get crusted over with stomach crap but they do revolve. That stuff that comes out of the hole is corrosive and painful when it irritates the wound. It's stomach acid.  Hold the tube and then rotate  the outside  bumper around the tube. Now move the bumper out away from the irritated skin about 1/4 of an inch. Clean behind there and put some lubrication behind the bumper. You can split a piece of gauze to fit around the tube and sit on the hole behind the bumper and on your skin. Keep that corrosive fluid from crusting. Keep everyrhing clean and lubed.  A 4 inch ace bandage wrapped around your torso will keep everything from hanging. Whoever told you this thing is not painful was a bit deceptive. It requires daily maintenance and cleaning or you will stay in a state of agony. They should have given you a tutorial about care and cleaning and perhaps some gauze and swabs. If not go back and ask for a session.  Just walk into the office where they put it in and insist on it.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #16
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    Kritter said:

    Thanks Everyone....

    Thanks to all who wrote and yep it did feel like labor pains.. only I think * natural* labor pain would have felt better. * smile *  I went to the emergency care center they have close to me and the Doc there at first just thought I was just there to get pain pills. I told him if that was all he was going to say .. I'll take it out myself.. I told him.. I didn't want just pain pills I wanted him to look at it and see what was wrong. Hubby told him * she can be a little pill when she needs to be, so you better check her * .. He then decided to take an elastic band and wrap it very tightly around me.. I told him.. didn't think we should do that, but he persisted. Gave me some pain meds and I said let's just go. 

    Got home I unwrapped it, and had help to rewrap under it.. That does help.. I don't know why..but it really does. Still painfull but I can walk around better now. Seeing my Gas Doc ( as I call him) on Tuesday. Until then, I think I can tolerate it. 

    So sorry y'all have had pain with this as well, mine has the little feet under it also, and they do dig in. Feels better when I first get up and then as soon as I drink or eat.. stomach swells and pain is back.

    Thanks to all of you again. It made me feel so much better knowing I was not alone, even if I didn't answer right away.. I was reading the helpful hints.

    Prayers and Hugs!

    Kritter 

    Did they send you home with

    the gauze pads and saline solution?  There are pads precut and ready to use for PEGS...I used half and half solution of saline and Hydrogen Peroxide to clean under the bumper, slide the pad in and paper-tape the sides.  I also turned it 1/2 turn per day.  By the time I'd had it a couple of months, I stilled cleaned it twice a day, but skipped the gauze :), and used 3 way antibiotic salve under the bumper to keep it lubed.

    You look like you might be on the smaller side.....after trying a dozen different ways of storing the tube on my body (down my pants, up in my bra, tape, ace bandage, the list is too long).....I found lycra/cotton camisoles on Amazon with built in bras......these were little wonders for holding the tube close to my body....enough stretch to keep it in place, but not binding.  Plus they look cute under sweaters or shirts....you don't have to tuck them in.

    http://www.amazon.com/gp/product/B007T3RKXQ/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

    p

  • lornal
    lornal Member Posts: 428
    #17
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    Ointment

    I used Calmoseptine.  It is like diaper cream, but for grownups.  If you can't find that, get some diaper cream.  If you have leakage or granulation tissue, you'll wan't to protect the skin around the stoma.  I didn't start using until several weeks after I got the tube.  This stuff worked great - I found it at Health Mart pharmacies, not at walgreens or cvs. 

    Also great when you get a colonoscopy down the road :)

    Lorna

  • Kritter
    Kritter Member Posts: 147
    #18
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    phrannie51 said:

    Did they send you home with

    the gauze pads and saline solution?  There are pads precut and ready to use for PEGS...I used half and half solution of saline and Hydrogen Peroxide to clean under the bumper, slide the pad in and paper-tape the sides.  I also turned it 1/2 turn per day.  By the time I'd had it a couple of months, I stilled cleaned it twice a day, but skipped the gauze :), and used 3 way antibiotic salve under the bumper to keep it lubed.

    You look like you might be on the smaller side.....after trying a dozen different ways of storing the tube on my body (down my pants, up in my bra, tape, ace bandage, the list is too long).....I found lycra/cotton camisoles on Amazon with built in bras......these were little wonders for holding the tube close to my body....enough stretch to keep it in place, but not binding.  Plus they look cute under sweaters or shirts....you don't have to tuck them in.

    http://www.amazon.com/gp/product/B007T3RKXQ/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

    p

    Hey.. yes they did

    Hi.. yes they did send me home with pads, paper tape, etc. Just no one told me exactly what to do, and the Home Health nurse that came, just cleaned it and didn't tell me how often to really do that. I think it is just too tight..we were told not to use hydrogen peroxide as it actually damages good cells, my hubby was using on a cut and a nurse told him to stop and just use neosporin, when he did it healed up in a couple days. 

    I did go to the care center on Saturday.. and have an appt tomorrow with the Doc who put it in. But they are not going to be happy with me at all I am afraid. Seems the Doc there didn't check the med list of what I am allergic too and gave me something else I am allergic too, sitting here tonight with hives,  (had them all afternoon, they are disappearing some now), after throwing up all morning, and feeling like I was drunk all day yesterday. * That should have warned me to stop taking it* ..I just hate the look I get when they ask me what I take for pain, if it's not my usual Doc, and I say demerol as I am allergic to most pain meds. Make me feel like I am a drug addict just looking for pills. It's been where I would about just cry for days rather than have to go see Doctors.

    Phrannie.. I just love your attitude!.. and Thanks for the referral.. I did order a couple of those tops.. like you I have no idea where to place this thing.. Especially since the Doc told me.. don't worry no one will know you even have it.. too funny!

    Sorry for the attitude.. I guess I am just angry about all this right now.. maybe tomrrow will be better.. after all.. I do get to go see those Doctors.. LOL 

    Prayers and Hugs

    Kritter

     

     

     

  • Kritter
    Kritter Member Posts: 147
    #19
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    ratface said:

    Try loosening it some

    There are sevearl different types of pegs as has been mentioned. If this description dose not fit your circumstance then disregard it. Generally there is a tube and two bumpers, one bumper outside and one inside as mentioned. Picture two donuts with a tube running  thru them.  One donut on either side. The donuts will revolve around the tube. They may get crusted over with stomach crap but they do revolve. That stuff that comes out of the hole is corrosive and painful when it irritates the wound. It's stomach acid.  Hold the tube and then rotate  the outside  bumper around the tube. Now move the bumper out away from the irritated skin about 1/4 of an inch. Clean behind there and put some lubrication behind the bumper. You can split a piece of gauze to fit around the tube and sit on the hole behind the bumper and on your skin. Keep that corrosive fluid from crusting. Keep everyrhing clean and lubed.  A 4 inch ace bandage wrapped around your torso will keep everything from hanging. Whoever told you this thing is not painful was a bit deceptive. It requires daily maintenance and cleaning or you will stay in a state of agony. They should have given you a tutorial about care and cleaning and perhaps some gauze and swabs. If not go back and ask for a session.  Just walk into the office where they put it in and insist on it.

    Hoping to get it loosened

    Thank you!.. That helped alot in knowing why it could be hurting so bad.. I haven't felt like looking it up and seeing how it was put together. Now it makes sense. There is some yellow looking gunk and some slightly pinkish/red discharge that has eased today. Except for the yellow.. I have been changing the gauze often. Believe me.. the Doc who put it in will have some answers for me tomorrow.. I am not usually a grumpy person.. but being scared and then have to deal with pain, is just more than I can handle right now.

    Prayers and Hugs!

    Kritter

  • Kritter
    Kritter Member Posts: 147
    #20
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    lornal said:

    Ointment

    I used Calmoseptine.  It is like diaper cream, but for grownups.  If you can't find that, get some diaper cream.  If you have leakage or granulation tissue, you'll wan't to protect the skin around the stoma.  I didn't start using until several weeks after I got the tube.  This stuff worked great - I found it at Health Mart pharmacies, not at walgreens or cvs. 

    Also great when you get a colonoscopy down the road :)

    Lorna

    Ointment

    Thanks for the great tip!.. will have to check this out when I get into town tomorrow.. this site is so full of wonderful people.. thry have a compunding pharmacy here and thinking of going in and talking with them, as well.. Thank you again.. 

    Prayers and Hugs,

    Kritter

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