Peg tube

Dean54
Dean54 Member Posts: 160 Member
in Head and Neck Cancer #1

I've read quite a bit on this forum and was somewhat prepared for the pain after the tonsillectomy which was pretty bad but not the excruciating pain I'm experiencing from the peg tube insertion this morning.

About 30 to 40 minutes after the surgery while I was in recovery it felt like somebody hit me in the stomach with a baseball bat and didn't subside until after a shot of fentayl which only lasted about an hour and the started up again at home. 2 pain pills later and it has eased somewhat.

If I had realized how bad this was I might have flatly refused this part of the treatment and took my chances.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    for PEG users only

    Dean54,

    I  had two PEGs, one  very bad and painful, the other very good and pain free.  If it hurts I tend to think things are not right, but there are those on the H&N forum who have continual problems.  If your team can not find a solution and they don’t think you are nuts, then I guess you have to live with it (I would not).

    Even with the PEG I continued to drink at least one meal a day along with about 10 glasses of water.  Swallowing was drilled into me so much that I wasn’t about to forget how to swallow.

    Looking back I may have been successful without a PEG as I was always able to achieve my calorie requirements. I had my PEG popped at 2 weeks post and never looked back.  Those lazy days of the Jevity up high on gravity drip are just memories of another time and place.

    Good luck.

    Matt

  • DanceSkater
    DanceSkater Member Posts: 62
    edited September 2017 #3
    Two Peg Tubes

    Dean54,

    Like Matt, I have had two peg tubes (one Mar/Apr 2016 and one June 2017).   I'll admit they both hurt at the start.   I told my sister when the first one was done that I felt like someone had stabbed me in the stomach.  She said "well ...... someone did put a hole in your stomach !!"  I expected it to hurt and it did.  However,  I did not take anything for pain for either one and I'm a real wimp.  They both hurt for at least a week.

    I was VERY happy that I had the peg about half way through my treatment of 35 rads and 8 chemo.  Even with the tube, I lost 20 pounds and had to go in for many sessions of IV fluids.

    If your pain does not lessen soon, I would contact your doctor.  Hope you feel better soon !

    Jan

  • Sinus2016
    Sinus2016 Member Posts: 36
    #4
    Surprise the Dr told me it wouldnt hurt and where they wrong

    When  my peg was installed I did ok but that was because they had me on pain killer.  When I left the hospital I remember the Dr saying no big deal so I ignored the pain prescription and went home that was on Saturday and with no prescription in hand.  Later that day my stomach cramped up and I literally dropped to floor and screamed in pain.  Fortunately my brother who is a doctor of emergency medicine was visiting and he was able to stop the cramping and ease the pain. Did I ever regret not filling my prescription.  Anyway it got better.  My daughter bought me a pregnacy waist band and I used that to keep the peg in place so I wouldn't accidentally knock it out.  I dropped the peg a few weeks after my last treatmant and that was hard because it got so easy to pump ensure and water rather suffering with the pain and sensitivity of food stuffed in my mouth.

  • Dean54
    Dean54 Member Posts: 160 Member
    #5
    The pain is slightly better

    The pain is slightly better this morning but the depression from having this damn thing is not but I have no choice, at least not now. All the other "goodies" start in a week or 2.

  • Dean54
    Dean54 Member Posts: 160 Member
    #6
    Thanks Soonermom and

    Thanks Soonermom and everybody else that commented. I'm having a hard time right now and can't even hardly get out of bed right now and know it will get worse before it gets better.

  • rsp
    rsp Member Posts: 103 Member
    edited September 2017 #7
    Peg tube

    Dean54,

    My husband did not have a peg tube, and he ended up dropping 90 pounds!  Looking back, I think we both agree that it was probably a mistake not to get one.  His treatment ended in December, and he is still struggling to put any weight on 9 months later. So, I am praying for you that the pain subsides.  

    I agree 100% with CivilMatt when he says it is important to drink and keep those muscles in your throat working.  My daughter is a speech pathologist, and she "preaches" about the importance of swallowing.  

    Hang in there, and know there are people on this site who are here for you.  It is not an easy ride, but you can make it.  Thanks to this site, I have been able to help my husband (he was not willing to join himself) stay strong and push through.  

    The journey is not over (even after 9 months), but we are taking life a day at a time, and we are thankful every day we wake up and put our feet on the floor.

    Reach out on here and stay connected... you will be glad you did!!!

    Best of luck, and hang in there!

  • soonermom
    soonermom Member Posts: 155
    #8
    Depression

    Being depressed about the PEG is normal.  My husband was so angry and hated it at first.  All I can tell you is one day he said to me, "I have realized that the PEG is not my enemy, it is my friend."   He tells everyone now that he does not think he would have survived treatment and recovery without it.  I know he would have been in the hospital a lot more. When the time came to take it out he actually had mixed feelings.  He says eating real food is so much more work and less pleasant than just putting calories in the PEG but of course he knew it was the right thing to do.  He does feel freer without it but intake levels require constant monitoring.  Hang in there.  There are no medals at the end for not having a PEG and no shame for having one.  Every patient needs to use whatever tools available to get to the end of treatment in the best shape possible so that your recovery is as quick and complete as possible.  That's the goal.  NED and able to enjoy life and you won't care if you had or did not have a PEG.

  • OKCnative
    OKCnative Member Posts: 326 Member
    #9
    I recently completed

    I recently completed treatment (chemo and rads). I opted for no feeding tube. To me the decision came down to my mental health - the thought of a tube was too depressing. And the fact that even with a tube I was still expected to swallow water and do tongue swallowing excercises. I just figured, if I have to do all that anyway, what does the tube help me avoid? That being said, there were many times I second guessed myself. I had zero drive to eat and the pain while swallowing the Boost was so bad I wouldn't even let my wife be in the house while I did it. I put 20 pounds on prior to treatment and lost it plus 10 more.

    im only a week out of treatment and still only get calories from Boost. I hope that changes soon.

  • Dean54
    Dean54 Member Posts: 160 Member
    #10
    It's been a little over a

    It's been a little over a week with this tube and finally sort of getting used to it being in the way and I guess I will find out soon whether I will need it or not with the rad. starting soon. For some reason I have totally lost my appetite and food tastes terrible and the treatment hasn't even started. The cancer working on me? Not sure....

  • Nelsonator
    Nelsonator Member Posts: 4
    #11
    I miss food

    the first week I had  the tube in was depressing. I miss my cheeseburgers. I do not like that jevity at all. It turned my stomach and made me nauseous. I use boost plus now which has a flavor and a smell to it. Try it, it's the same thing. I like the strawberry one. Good Lucy and you are in my prayers. 

    Jeffrey. 

  • Dean54
    Dean54 Member Posts: 160 Member
    #12
    Thanks Jeffrey. I am sorta

    Thanks Jeffrey. I am sorta used to the tube and have learned to exercise with it but it's still in the way most of the time. Start treatments next week so it won't be long until I find out of I need it or not. Going to be a long next 2 months...

  • JBBW
    JBBW Member Posts: 30
    #13
    Hated the PEG

    I hated the PEG tube.  I got it placed the first week I had radiation treatment and a few days after the first chemo.  That's not why I hated it.  It hurt.  They put it in with T-faseners and those things cut into my skin.  On top of that they gave me instructions about the fasensers while i was still recovering from ansethetic so I didn't remember talking about them at all.  Especially the part where they told me they would call in a week or so to make arrangements to get them cut.  It was a mess.  I ended up in so much pain that I ended up going back to the hospital 10 days later to the department where they did the surgery and telling them to either talk to me about these buttons that were starting to bleed me or I was going to cut them off myself.  Once I got those things removed the PEG tube was mostly painless....mostly.   It would 'jump' every once in awhile because of my stomach moving.  That was just more disturbing than painful.  I used the thing for about a week right at the end of my radiation treatments. 

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