Just got my PEG installed; what a nightmare!

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adventurebob
adventurebob Member Posts: 691
edited March 2014 in Head and Neck Cancer #1
Hey all,
Just got released from a 4 day stay at the local hospital after going in on Wednesday for same day surgery/installation of the PEG tube. About an hour after being released I began experiencing the most horrible stomach pain of my life, actually the most horrible pain of my life period. There was the pain from the small incision in my stomach which was painful but maybe only a 5. Then there was the interior pressure that was sharp and stabbing and felt as if I was going to explode. That one was an 11 at least. The pain kept me on my knees and caused nausea and vomiting which only made it worse. Pain meds couldn't even touch it. I was finally able to get to my feet and make it to my truck so my girlfriend could drive me to the ER. Once there, an IV dilaudid helped immensely but still I was hit by the full intensity of the pain every few minutes. CAT scan revealed ilius of the gi system, meaining everything had just stopped working. NO digestion, no gas passing no nothing. The whole cavity was filled with air that wasn't moving except expanding outward. I spent the last 4 days on dilaudid for the pain along with a drug that helps restart the system. Everyone kept telling me I needed to pass gas before I could go home. Usually that wouldn't be a problem but nothing happened until last night. What a relief when it finally did. It's continued to escape and provide relief and I was release just about an hour ago. The PEG installation was a total nightmare but I can't even begin to imagine what a nightmare it would have been while undergoing chemo and radiation. They've moved my schedul back a bit so it looks like I won't be starting up chemo/rads until Wednesday at the earliest. Good news is I got to watch the Giants beat the Phillies to advance to the World Series while in the hospital. Go Giants!

Bob
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Comments

  • rush1958
    rush1958 Member Posts: 223 Member
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    PEG
    I'm sorry you had so much trouble with your PEG. Everyone's experience is different.

    Most people speak very highly of the PEG, the ease at which it is installed and the benefit once it is in place.

    Unfortunately, I was like you. I thought the feeding tube was the most miserable experience of the entire cancer treatment. For me, it was extremely painful having it installed. Then it debilitated me for weeks.

    In the end, it was a totally wasted procedure for me. I never needed the tube. I could always swallow without pain or difficulty throughout the process. Having that miserable piece of plastic removed was one the great highlights of my cancer treatment.

    Rush
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Bob
    Sorry to hear about the pain, but you got to admit there is nothing like a good fart.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    Hondo said:

    Hi Bob
    Sorry to hear about the pain, but you got to admit there is nothing like a good fart.

    Man, I am sorry that
    Man, I am sorry that happened. That is beyond painful. :( Hope you are feeling better now and have no further problems.
  • forme
    forme Member Posts: 1,161 Member
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    So sorry
    Hi Bob,
    It sound like you were put through the ringer. Lets hope that it's smooth sailing for the rest of your treatment. I have had experienced like that. A quick er visit that turns into an extended hospital stay. Glad that your now home and resting with less pain.
    Very happy for you that you got to see the Giants beat the Phillies.
    The headlines this morning in the Mercury News read "CARDIAC CHAMPS". I was on the edge of my seat. Whoo Hoo Go Giants !!!
    Peaceful healing
    Lisha
  • Kimba1505
    Kimba1505 Member Posts: 557
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    Man, I am sorry that
    Man, I am sorry that happened. That is beyond painful. :( Hope you are feeling better now and have no further problems.

    OMG...
    I don't know what is more distressing...what you went through with the insertion of your PEG or to hear that you are rooting for the Giants. I am in Philly and our beloved boys lost...I am not a big professional sports fan...but I do love our Phillies. Neat group of guys. Ryan Howard was not hitting at all...I would have to say it is what lost it for us.

    But what an ordeal for the PEG insertion. So sorry you went through all that. On the up side your experience goes into the archives of the H&N message boards for those in the future who may experience the same or similiar and will know that there is a solution.
    That said...I hope your PEG is just a safety net and you will not need to use it (much).
    Best,
    Kim
  • adventurebob
    adventurebob Member Posts: 691
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    Kimba1505 said:

    OMG...
    I don't know what is more distressing...what you went through with the insertion of your PEG or to hear that you are rooting for the Giants. I am in Philly and our beloved boys lost...I am not a big professional sports fan...but I do love our Phillies. Neat group of guys. Ryan Howard was not hitting at all...I would have to say it is what lost it for us.

    But what an ordeal for the PEG insertion. So sorry you went through all that. On the up side your experience goes into the archives of the H&N message boards for those in the future who may experience the same or similiar and will know that there is a solution.
    That said...I hope your PEG is just a safety net and you will not need to use it (much).
    Best,
    Kim

    You made me smile
    Thank you Kim. That was the most I've laughed in 4 days. What a blessing you are.

    Bob
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
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    Kimba1505 said:

    OMG...
    I don't know what is more distressing...what you went through with the insertion of your PEG or to hear that you are rooting for the Giants. I am in Philly and our beloved boys lost...I am not a big professional sports fan...but I do love our Phillies. Neat group of guys. Ryan Howard was not hitting at all...I would have to say it is what lost it for us.

    But what an ordeal for the PEG insertion. So sorry you went through all that. On the up side your experience goes into the archives of the H&N message boards for those in the future who may experience the same or similiar and will know that there is a solution.
    That said...I hope your PEG is just a safety net and you will not need to use it (much).
    Best,
    Kim

    PHILLIES LET DOWN
    I am from STL, but once the Cards were eliminated, we all in my house become Philly fans. Ryan Howard is a product of the same High School District that my 2 boys are, so one cannot help to root them on.

    He is a great Human Being also!!

    Mike
  • adventurebob
    adventurebob Member Posts: 691
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    PHILLIES LET DOWN
    I am from STL, but once the Cards were eliminated, we all in my house become Philly fans. Ryan Howard is a product of the same High School District that my 2 boys are, so one cannot help to root them on.

    He is a great Human Being also!!

    Mike

    Phillies
    Good luck with rooting for the Phillies in the World Series Mike. I'd feel alot better about you rooting for the Giants. Maybe everyone on this board could get on board the Giants train?
    Bob
  • adventurebob
    adventurebob Member Posts: 691
    Options
    rush1958 said:

    PEG
    I'm sorry you had so much trouble with your PEG. Everyone's experience is different.

    Most people speak very highly of the PEG, the ease at which it is installed and the benefit once it is in place.

    Unfortunately, I was like you. I thought the feeding tube was the most miserable experience of the entire cancer treatment. For me, it was extremely painful having it installed. Then it debilitated me for weeks.

    In the end, it was a totally wasted procedure for me. I never needed the tube. I could always swallow without pain or difficulty throughout the process. Having that miserable piece of plastic removed was one the great highlights of my cancer treatment.

    Rush

    PEG
    How did you shower with the dang thing Rush? Doc says to wrap my torso in saran wrap but there's gotta be a better way.
    Bob
  • rush1958
    rush1958 Member Posts: 223 Member
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    PEG
    How did you shower with the dang thing Rush? Doc says to wrap my torso in saran wrap but there's gotta be a better way.
    Bob

    Shower
    Bob,

    I only needed to keep it covered for a couple of days, then I showered like normal. The hospital gave me a large, clear plastic-type bandage that was square and had adhesive on all four edges. It was waterproof and covered the area for 48 hours. After that, I washed around it daily and used peroxide on it in the shower.

    Rush
  • stevenl
    stevenl Member Posts: 587
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    Phillies
    Good luck with rooting for the Phillies in the World Series Mike. I'd feel alot better about you rooting for the Giants. Maybe everyone on this board could get on board the Giants train?
    Bob

    Rangers
    Hi Bob,
    Sorry about the ordeal with the PEG. They put me out too, and mine was Radiologist assisted in placement. No trouble for me at all. Like Rush said showering after a while should be no problem for you. You will get used to it and it should not be a burden.

    Oh yea and by the way GO RANGERS!!! I am in Fort Worth.

    Best,
    Steve
  • kimmygarland
    kimmygarland Member Posts: 312
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    stevenl said:

    Rangers
    Hi Bob,
    Sorry about the ordeal with the PEG. They put me out too, and mine was Radiologist assisted in placement. No trouble for me at all. Like Rush said showering after a while should be no problem for you. You will get used to it and it should not be a burden.

    Oh yea and by the way GO RANGERS!!! I am in Fort Worth.

    Best,
    Steve

    What an Ordeal!
    Sorry to hear about the ordeal getting tubey installed, but he could end up being your best friend if you need him. Hang in there.

    Go Rangers! (I'm in Dallas)
  • forme
    forme Member Posts: 1,161 Member
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    Phillies
    Good luck with rooting for the Phillies in the World Series Mike. I'd feel alot better about you rooting for the Giants. Maybe everyone on this board could get on board the Giants train?
    Bob

    Oh yes
    Hi Bob,
    You can count me in. I've been a Giants fan all my life. My grandkids even came over yesterday decked out in their championship gear. Waited hours in line at the dugout...
    Whoo Hoo Go Giants !!!
    Lisha
  • forme
    forme Member Posts: 1,161 Member
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    PEG
    How did you shower with the dang thing Rush? Doc says to wrap my torso in saran wrap but there's gotta be a better way.
    Bob

    Nexcare
    Hi Bob,
    The bandage is sold at local drugstores. They come in a box of 5?. Made by nexcare. Totally great. Waterproof and breatheable at the smae time. So you are able to heal and leave it on. You will only need it for a short amount of time..
    Peaceful healing
    Lisha
  • Kimba1505
    Kimba1505 Member Posts: 557
    Options
    stevenl said:

    Rangers
    Hi Bob,
    Sorry about the ordeal with the PEG. They put me out too, and mine was Radiologist assisted in placement. No trouble for me at all. Like Rush said showering after a while should be no problem for you. You will get used to it and it should not be a burden.

    Oh yea and by the way GO RANGERS!!! I am in Fort Worth.

    Best,
    Steve

    Cliff Lee/Rangers
    I am going to have to go with the Rangers too. Cliff Lee used to be with the Phillies. Sorry Adventurebob.
    Kim
  • Fire34
    Fire34 Member Posts: 365
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    NightMare
    Bob
    My nightmare when they did my PEG. I was on the table and they were putting the guide wire up the esophagus and I wasn't completely out. The guide wire then completely coiled up in my mouth, I thrashed all over the table until I was sedated completely.
    I certainly did not have the complications you had though.
    Wishe & Prayers on your treatment
    Dave
    P.S. I think I like the underdog, Rangers
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    Fire34 said:

    NightMare
    Bob
    My nightmare when they did my PEG. I was on the table and they were putting the guide wire up the esophagus and I wasn't completely out. The guide wire then completely coiled up in my mouth, I thrashed all over the table until I was sedated completely.
    I certainly did not have the complications you had though.
    Wishe & Prayers on your treatment
    Dave
    P.S. I think I like the underdog, Rangers

    Bob
    My experience was the opposite of your's. Installed in an Outpatient w/anesthesia, I was home two hours after the Op. Next couple days I had discomfort in the abdominal wall area of the PEG, but nothing major. And it was a Godsend to me- used exclusively for some 7-weeks, starting with week #2. Could not have made it without it. Didn't care for the bulk of it taped to my chest, and care for it, but this is C. All in all, I have nothing but positive thoughts about the PEG, which I had for 15+-months.

    kcass
  • patricke
    patricke Member Posts: 570
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    Nightmare On PEG Street
    Hey Bob,

    I'm sorry to hear about your horrendous PEG placement nightmare. Did the GI doc ever explain what caused the problem, because it does sound rather unusual? I hope that you won't need it, or only have to use it for a short period. My PEG has been very, very good to me. Take care.

    PATRICK
  • Pam M
    Pam M Member Posts: 2,196
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    Ugh
    Sorry about your ordeal. Very sorry it's pushed your treatments back - that's got to be very frustrating - I was bummed when mine got delayed twice by a day each time. On the plus side, after a nightmare like that, "regular" pain won't bother you as much (yeah, I know - stupid thing to say - but you can't throw anything at me). Do well.
  • NW DINO
    NW DINO Member Posts: 31
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    PEG installed today!
    Bob -

    So sorry to hear about the difficulty with the PEG tube. I just had mine installed today at 2pm. It is eight hours later & I am doing fine - a little discomfort at the site as the pain meds are wearing off. Still have the bag until tommorrow morning - have cleaned it twice. Cannot wait until I can eat & drink! I was impressed with the "low profile" nature of the device. I had envisioned something larger. This was quite a day for me! Had my 6th radiation treatment at 8:30am followed by my 1st infusion of Ebritux at 9am
    (my hearing loss intensifed with Cisplatin from last Monday's 1st chemo treatment so we switched to Ebritux). I am pulling for your Giants big time! Tough to root for the Mariners here until we change management. My thoughts & prayers to your own victory!

    Dino