PEG Pain

KareGiver
KareGiver Member Posts: 301 Member
in Head and Neck Cancer #1
Hi All...My husband has had 1 chemo and 7 rads. All is going well so far with this (I know it is early). His main problem has been the pain associated with his stomach. He had the PEG put in on March 24, which he is not using yet. Since then, he has had back issues, occasional sharp pain in his right thigh and continual numbness in that thigh. He has stomach upset and pain, especially at night a few hours after eating. He takes Prilosec daily. He did go through a very bad bout of constipation several days ago after chemo. He told the doctor so far the cancer is NO PROBLEM, but his stomach is a mess. Long story short: could there be a problem with the PEG? He is really so miserable. We have already been to the ER once, (a week after it was put in) and now feels he may need to go again. Of course, all of this happens on a holiday weekend, right? Any comments or suggestions much appreciated...

Comments

  • Ron49
    Ron49 Member Posts: 91
    #2
    Hi
    You have described almost
    Hi

    You have described almost exactly what happened to Ron. Everyone is different but he has had continual problems with his tube but the one thing that helped was a prescription for ativan which is anti anxiety med but he has not been able to stop taking it, and when he does he had bad nausea. We actually got the rx from the ER not the 1st time we were there but the 2nd time we were there which was from dehydration and yes it was a long weekend. I became very aware of the end of the week as things progressed and tried to make sure I had everything possible that I might need by Friday before the weekend.

    We do appreciate the benefits of the peg and it is a lifesaver however Ron's body has never really liked it.

    We are thinking of you and wish you only the best

    Hugs
    Robyn & Ron
  • KareGiver
    KareGiver Member Posts: 301 Member
    #3
    Ron49 said:

    Hi
    You have described almost
    Hi

    You have described almost exactly what happened to Ron. Everyone is different but he has had continual problems with his tube but the one thing that helped was a prescription for ativan which is anti anxiety med but he has not been able to stop taking it, and when he does he had bad nausea. We actually got the rx from the ER not the 1st time we were there but the 2nd time we were there which was from dehydration and yes it was a long weekend. I became very aware of the end of the week as things progressed and tried to make sure I had everything possible that I might need by Friday before the weekend.

    We do appreciate the benefits of the peg and it is a lifesaver however Ron's body has never really liked it.

    We are thinking of you and wish you only the best

    Hugs
    Robyn & Ron

    Robyn...thank you

    Robyn...thank you
  • janymac
    janymac Member Posts: 35
    #4
    KareGiver said:

    Robyn...thank you

    Robyn...thank you

    Whenever my PEG hurt it was
    Whenever my PEG hurt it was becuae it was injected- felt like a shrp knife piercing my body every time I moved. If it has any moistness around it, even if it is not red, do get it checked for that. Mine never went red, but was heavily infected.
  • KareGiver
    KareGiver Member Posts: 301 Member
    #5
    janymac said:

    Whenever my PEG hurt it was
    Whenever my PEG hurt it was becuae it was injected- felt like a shrp knife piercing my body every time I moved. If it has any moistness around it, even if it is not red, do get it checked for that. Mine never went red, but was heavily infected.

    janymac
    Infection has crossed our minds but we haven't really asked. Thank you!
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #6
    PEG Pain?
    PEGs only go (for me) a short distance from the outer abdomen to the stomach wall, and don't really go thru much in terms of body mass that's critical. That's only a little over 1" in internal length for little people, like me. I had some discomfort in the abdomen area where it was installed, because it has to go thru the abdominal wall tissue(s), which are very thin layers of tissue that form the abdominal wall. Mine was about 1" above my belly button, and 2" to the left. The discomfort went away after a few days, though, and I carried mine for over 15-months without any complications. Don't think it is typical to have any of the symptoms you describe. Does make me wonder just where your tube is, how competent the Surgeon who installed it was, and just what kinda food he is eating to get the stomach problems. Also, he has C and just got a PEG- so take it easy. A little discomfort was the only problem I had, and my PEG was the old fashioned kind- with the dome in my stomach measuring some 15/16" in diameter. Anything with the back and thigh- should physically not be on account of the PEG.

    As far as the constipation- typical w/chemo, as we all can atest to. Also, please realize that some of what he may be experiencing is not so untypical chemo side-effects, as the stuff is poison.

    Ron and Robyn- the potential for infection is far greater when you get the PEG put in during treatment, especially as late as Ron had his installed, because your body's immune system has taken a hit by the chemo. My Onco told me I had to get mine before treatment, because- 1)she knew my chemo delivery would make the PEG necessary, and 2)she told me the risk of complications would be too great to have it installed during treatment. So, if Ron is still having perceived PEG problems- very possible there is a complication, like infection, or another issue.

    And, unfortunately, let me remind everybody- hospitals have a lot of sick people, and sick going-on inside their building. Couple years ago the government came-out with a stat- it's estimated every year some 160,000 Americans die from a cause they didn't have when they checked-into a hospital, but acquired at said hospital. And when your immune system has been greatly compromised, thanks to the chemo- you are more vulnerable to acquiring something you'd be better off without. FYI.

    kcass
  • KareGiver
    KareGiver Member Posts: 301 Member
    #7
    Kent Cass said:

    PEG Pain?
    PEGs only go (for me) a short distance from the outer abdomen to the stomach wall, and don't really go thru much in terms of body mass that's critical. That's only a little over 1" in internal length for little people, like me. I had some discomfort in the abdomen area where it was installed, because it has to go thru the abdominal wall tissue(s), which are very thin layers of tissue that form the abdominal wall. Mine was about 1" above my belly button, and 2" to the left. The discomfort went away after a few days, though, and I carried mine for over 15-months without any complications. Don't think it is typical to have any of the symptoms you describe. Does make me wonder just where your tube is, how competent the Surgeon who installed it was, and just what kinda food he is eating to get the stomach problems. Also, he has C and just got a PEG- so take it easy. A little discomfort was the only problem I had, and my PEG was the old fashioned kind- with the dome in my stomach measuring some 15/16" in diameter. Anything with the back and thigh- should physically not be on account of the PEG.

    As far as the constipation- typical w/chemo, as we all can atest to. Also, please realize that some of what he may be experiencing is not so untypical chemo side-effects, as the stuff is poison.

    Ron and Robyn- the potential for infection is far greater when you get the PEG put in during treatment, especially as late as Ron had his installed, because your body's immune system has taken a hit by the chemo. My Onco told me I had to get mine before treatment, because- 1)she knew my chemo delivery would make the PEG necessary, and 2)she told me the risk of complications would be too great to have it installed during treatment. So, if Ron is still having perceived PEG problems- very possible there is a complication, like infection, or another issue.

    And, unfortunately, let me remind everybody- hospitals have a lot of sick people, and sick going-on inside their building. Couple years ago the government came-out with a stat- it's estimated every year some 160,000 Americans die from a cause they didn't have when they checked-into a hospital, but acquired at said hospital. And when your immune system has been greatly compromised, thanks to the chemo- you are more vulnerable to acquiring something you'd be better off without. FYI.

    kcass

    Kent
    Thank you for the information. We are so new to this website - and EVERYTHING - we are digesting it all.
    It's not a club we were looking to join, but the members are really great :)
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #8
    Peg tube
    It's so weird that you are saying pain and numbness in the thigh, because I had that too but with all the other pain and issues I had, I never brought it up. (I have to be dragged to doctor and don't complain when I should....blah blah blah) The pain thing and numbness thing went away after I got my tube out. I kind of didn't recal that till just now. I wonder too what the connection is. If you find out, please post.

    My stomach would really hurt if I didn't keep food in it. The hunger pangs would just contract my stomach and it felt like it was trying to digest the tube. It hurt! They also had me on Reglan for a while, but I had to off due to some side effects.

    Honestly, I had that tube for 18 months, and while it never got infected, it always was very uncomfortable, and always kinda hurt. Especially bending over. When I first got it put in it was VERY painful. Plus the bumper was too tight when he first put it in.
  • buzz99
    buzz99 Member Posts: 404
    #9
    Thigh pain, numbness
    I think I know what is causing the thigh pain. Buzz had the exact same symptom after the second round of chemo. He still has a numb thigh and occasional brief thigh pain. The oncologist said it was nerve damage from Taxotere (chemo). There is nothing you can do about it but it may get better in time. Hope this helps. Karen
  • KareGiver
    KareGiver Member Posts: 301 Member
    #10
    buzz99 said:

    Thigh pain, numbness
    I think I know what is causing the thigh pain. Buzz had the exact same symptom after the second round of chemo. He still has a numb thigh and occasional brief thigh pain. The oncologist said it was nerve damage from Taxotere (chemo). There is nothing you can do about it but it may get better in time. Hope this helps. Karen

    Oh my...
    Thank you Sweetblood and Karen...It really is something, isn't it? As it is said, everyone can have a different reaction, but there is always someone who can relate...thank goodness for all of you! After the PEG was put in, my husband (the Star Trek fan that he is) said his body had been invaded by aliens and that whatever is going on with his leg must have happened on the way to the spaceship. Okayyyy ;) We are TRYING to keep a sense of humor about this! Thanks again!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #11
    KareGiver said:

    Oh my...
    Thank you Sweetblood and Karen...It really is something, isn't it? As it is said, everyone can have a different reaction, but there is always someone who can relate...thank goodness for all of you! After the PEG was put in, my husband (the Star Trek fan that he is) said his body had been invaded by aliens and that whatever is going on with his leg must have happened on the way to the spaceship. Okayyyy ;) We are TRYING to keep a sense of humor about this! Thanks again!

    KareGiver
    It might be the chemo, I don't know though, because I definitely had that same exact numbness and pain, but I did NOT have chemo.

    I sent my best friend a picture of my little 'alien' (thats what i called my peg) when I got it done. After stating that it looked like it would be incredibly painful and uncomfortable, he queried, "How do we know exactly know what they are doing to you with all the suuuurgeriezzzz and proceeeedurezzz, how do we know what they are putting in there? I think they are making you a cyborg....they have the technology." When his wife came home, she looked at the picture. She said, "I think we should rent a helium tank, and attach it to that hose. We could hold onto the hose and float your skinny arse". Uh-uh. You gotta have a sense of humor.

    I tell people that "they only took out 23 lymph nodes, my salivary gland, and the tumor. They left the sense of humor intact because they knew I was going to need it."
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #12
    sweetblood22 said:

    KareGiver
    It might be the chemo, I don't know though, because I definitely had that same exact numbness and pain, but I did NOT have chemo.

    I sent my best friend a picture of my little 'alien' (thats what i called my peg) when I got it done. After stating that it looked like it would be incredibly painful and uncomfortable, he queried, "How do we know exactly know what they are doing to you with all the suuuurgeriezzzz and proceeeedurezzz, how do we know what they are putting in there? I think they are making you a cyborg....they have the technology." When his wife came home, she looked at the picture. She said, "I think we should rent a helium tank, and attach it to that hose. We could hold onto the hose and float your skinny arse". Uh-uh. You gotta have a sense of humor.

    I tell people that "they only took out 23 lymph nodes, my salivary gland, and the tumor. They left the sense of humor intact because they knew I was going to need it."

    PEG
    Complications w/PEG, as listed in Wikipedia:

    1)Cellulitis (infection of the skin) around the gastrostomy site

    2)Haemorrhage

    3)Gastric ulcer either at the site of the button or on the opposite wall of the stomach ("kissing ulcer")

    4)Perforation of bowel (most commonly transverse colon) leading to peritonitis

    5)Puncture of the left lobe of the liver leading to liver capsule pain

    6)Gastrocolic fistula: this may be suspected if diarrhea appears a short time after feeding. In this case, the feed goes direct from stomach to colon (usually transverse colon)

    7)Gastric separation

    8)"Buried bumper syndrome" (the gastric part of the tube migrates into the gastric wall)

    I've read that complications arise in some 1% of the cases, so it is safe. As for thigh and back pain, again, the PEG is very unlikely the direct cause, based on just the physical facts of the PEG. Still, it does present an anomaly to the digestive track, and perhaps may lead to intestinal pressure/enlargement (constipation) which may press against a nerve that would give the symptoms described. A good source w/links is Wikipedia.

    The one intangible I've found pertains to internal seapage. And that is kinda interesting, because what would happen if that seapage came into contact with the femoral nerve, which runs from the area behind the stomach down to the outside of the thigh, which it crosses to the inside of the knee? Would the femoral nerve act-up, and bring pain/numbness to the thigh?

    And, again, what you're talking about is kinda foreign to my experience, which I described earlier in this thread. I worked for almost a year wih it, and I'm on my feet and moving about for typically 7 out of every 8 hours, and the only real discomfort I had with it was the first few days around the area where the tube actually is.

    Hope this helps explain the PEG possibilities.

    kcass

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