PEG tube pain

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Linda C.
Linda C. Member Posts: 107 Member
edited June 2017 in Head and Neck Cancer #1

Had PEG tube put in on June 1st and am healing slowly. Still have some blood on gauze when I clean and change it. I am sore at the location however, the real pain I am having is to the left of the stoma... about five inches away.  It is like a muscle spasm that only lasts a few seconds at a time. I called my Gastro doctor and he said that was nothing to worry about as it is just a muscle.  It really hurts bad when not on pain meds.  Anybody else have this problem?

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  • Dennis from Kansas
    Dennis from Kansas Member Posts: 46
    #2
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    Pain

    Hi Linda,Ive had my peg tube for 8 months as it was put in just before starting treatment,im now in the process of trying to eat.I have experenced some pain from time to time.I thought something was wrong as it hurt by just touching it for the last two days.Today i wake up and it doesnt hurt at all.I was told by the doctor who put it in,that i needed to make sure that it didnt get infected.If its not red around it you should be ok.Hopefully in your case the muscle will quit with the spasms.        Dennis

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
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    I remember well thinking..."this is like labor"

    when I had my PEG put in....muscle spasms out of my control!  They start, they'd peak, then they'd ease off....only to begin again.  It DOES come to an end after a weeks or so....and if I remember right, by 4 days it wasn't as intense....so if the intensity is still very high, I call him back.  It's not unusual for them to hurt, and it seems women get this pain more often than men (go figure)....

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
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    PEG wisdom for today

    Linda,

    I had 2 PEG’s the first one was very bad and the pain when trying to use it was terrible and brought tears to my eyes.  My second one was great, worked every time and had no pain.

    I have no clue about yours except it should not hurt when at rest or play.

    Consult your medical team, it may be something simple.

    Matt

  • Joel4
    Joel4 Member Posts: 263 Member
    #5
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    Muscle Spasms

    Had a PEG put in back in February.  Had intense spasms, I called them contractions lol, for several days following the procedure.  Took me close to two weeks before all of the pain and discomfort from the PEG cleared up, but it DID get better!

  • Linda C.
    Linda C. Member Posts: 107 Member
    edited June 2017 #6
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    Joel4 said:

    Muscle Spasms

    Had a PEG put in back in February.  Had intense spasms, I called them contractions lol, for several days following the procedure.  Took me close to two weeks before all of the pain and discomfort from the PEG cleared up, but it DID get better!

    Good to hear I'm not the only

    Good to hear I'm not the only one.  And yes, it does feel like contractions.  I am going to call doctor tomorrow and ask for stronger meds.  This constant pain drains me and I am exhausted.  The Hydrocodone 325 mg. is not enough.  If I take more than prescribed I won't have enough to last and fear he won't refill the prescription.  How horrible to have to go through this.  I should not have to worry about pain that can be prevented.  Thank you all for your responses.

  • Linda C.
    Linda C. Member Posts: 107 Member
    #7
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    Starting taking stronger pain

    Starting taking stronger pain meds and the spasms have reduced in frequency.  This is day 7 and am hoping they will be gone in a week or so.  The Cancer Center called me today to inform me that they will have to push my Radiation mask fitting up to next Tuesday as the machine is down for maintenance.  That means that I have 4 more days to heal up from the PEG surgery.  Happy about that.

  • jpmsd
    jpmsd Member Posts: 14
    #8
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    I had the same issue, spasms

    I had the same issue, spasms and cramps. One day the dog jumped right on it and I jumped right through the roof!

    After a couple weeks they subside however my PEG was stitched in and the stitches were tight causing unreasonable pain. It started to leak a lot within another week or so. They replaced it with a mic-key. HUGE quality of life improvement. The tube is detachable so no poofy shirts or other craziness. The locking mechanism on it is way easier to use in between bolus feedings. 

    Highly recommend asking them to replace it with a mic-key after a couple weeks...

  • Linda C.
    Linda C. Member Posts: 107 Member
    #9
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    jpmsd said:

    I had the same issue, spasms

    I had the same issue, spasms and cramps. One day the dog jumped right on it and I jumped right through the roof!

    After a couple weeks they subside however my PEG was stitched in and the stitches were tight causing unreasonable pain. It started to leak a lot within another week or so. They replaced it with a mic-key. HUGE quality of life improvement. The tube is detachable so no poofy shirts or other craziness. The locking mechanism on it is way easier to use in between bolus feedings. 

    Highly recommend asking them to replace it with a mic-key after a couple weeks...

    That sounds like something I

    That sounds like something I would like to have instead of this tube.  Will ask doctor about it. 

  • Tjfrazier1
    Tjfrazier1 Member Posts: 1
    #10
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    Peg tube pain

    I've had the tube in for about four week. This last week something in my stomach is pulling the tube in. It keeps pulling until all the slack is gone then holds it like that till it releases. I figure my stomach wall is contracting and relaxing causing peg tube movement. This is new it just started about a week ago And is very painfull. It happens regularly at least once every hour. The whole sequence takes about 1or2 minutes. The skin around the stoma is red and painfull I think this is from stomach acid on the tube when it exits the stomach. I'm more curious than alarmed about this. Its about the weirdest feeling I have felt.

     

  • Logan51
    Logan51 Member Posts: 464 Member
    edited June 2021 #11
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    Tjf

    I've been on a G-tube twice now, and have not experienced what you are. I'm talking about 3 years of Peg experience without your issue, so I'd get to the Dr. as soon as you can. If you're getting stuff on your stomach from inside- not good, and you might be inviting an infection. 4 weeks and this happening- hard to blame the Surgeon for it, but something is not right.

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
    #12
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    Tjfrazier1 said:

    Peg tube pain

    I've had the tube in for about four week. This last week something in my stomach is pulling the tube in. It keeps pulling until all the slack is gone then holds it like that till it releases. I figure my stomach wall is contracting and relaxing causing peg tube movement. This is new it just started about a week ago And is very painfull. It happens regularly at least once every hour. The whole sequence takes about 1or2 minutes. The skin around the stoma is red and painfull I think this is from stomach acid on the tube when it exits the stomach. I'm more curious than alarmed about this. Its about the weirdest feeling I have felt.

     

    Tjfrazier1 Welcome

    To the forum. I agree you can get some funny feelings with those things now and then. The first one I had hurt right after getting it in and they did a scan to make sure it was in correctly and it was. The main thing is to keep it clean and as dry as possible. Don't have the tube moving around a lot. I cut the top band off a pair of old underwear and it makes a perfect holder strap. if you lose weight just use a safety pin to tighten it up. Also, I noticed when I put a patch around the tube it soaked up leakage but kept it wet in the area which seemed to not work as well so I just left it uncovered and it would build up some scale when it dried but was easy to take off and too much excess liquid wipe up. What you are experiencing is probably somewhat normal. If you think it's something out of the ordinary or just want to put your mind at ease go in and have it checked to make sure-Take Care-God Bless-Russ

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #13
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    to PEG or not to PEG?

    Tifrazier1,

    Welcome to the H&N forum. I haven’t been around lately but I still am actively pursuing interests I have in this site.

    As for the PEG, it should not be uncomfortable as normal. It should be pain free and ready to host a jevity party or special home spun concoction.  I said last time I responded to this thread that “I had 2 PEG’s one which was very bad and absolutely caused one of the most painful discomfort levels of my life.  NO KIDDING, I MEAN THIS SINCERELY! And the second one I had which was a pleasure to use every time.

    I do not know what makes these things to not function properly, but I bet you or your doctor can figure it out. Going through cancer treatments is hard enough when things are going your way, let  alone a funky PEG.

    Matt

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    edited June 2021 #14
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    My PEG,

    was only unconfortable, until I got used to it.

    I personally was able to get through Radiation and Chemo without using it - but i definitely seemed to have been an exception, rather than the rule. So, ironically, I would recommend that people seriously consider getting it, before starting treatment.

    With that said, I could not WAIT to get it taken out!!

    I realize this is an old thread - so I certainly hope Linda is many NED's past her treatment - and has all but forgotten the pain of her PEG!

    MG

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