feeding tube

Daisylin
Daisylin Member Posts: 365
in Esophageal Cancer #1
Well, finally, today was the big day. Lee had his feeding tube put in. Hooray I hope! They decided on a GJ tube, (gastrojejunostomy) which I don't believe anyone here has ever mentioned. It seems to be like a g-tube insertion, but the tube is fed into the small bowel through the stomach.

The problem is that he's in significant pain, about an 8/10 level. The nurse seemed to think that was not normal and asked a doctor to come see him. By the time he showed up I had gone home, and the doctor's accent was so thick that no one could understand a word he was saying. The only thing Lee understood was that they were going to send him for x-rays to make sure the tube was placed properly.

Has anyone that's had a tube put in faced this pain? They have been giving him everything under the sun to help with the pain, and nothing seems to help much. The nurse seemed pretty concerned about it....... The pain seems to be at the incision site, and is worse when he exhales or tries to move a bit. As always, any suggestions are welcome! Thanks!!!!

Chantal

Comments

  • fredswilma
    fredswilma Member Posts: 185
    #2
    Hi Chantal
    Glad that Lee has
    Hi Chantal
    Glad that Lee has his feeding tube in, sorry that the pain is so bad for him, It seems that everything that we do to try and help has its drawbacks, you know one step forward two steps back, I do believe that when the pain has lessened the feeding tube will really be a big help to Lee with regards to nutrition and regaining some of the strength he has lost, hang in there will be thinking of you both.
    Ann
  • Joel C
    Joel C Member Posts: 174
    #3
    fredswilma said:

    Hi Chantal
    Glad that Lee has
    Hi Chantal
    Glad that Lee has his feeding tube in, sorry that the pain is so bad for him, It seems that everything that we do to try and help has its drawbacks, you know one step forward two steps back, I do believe that when the pain has lessened the feeding tube will really be a big help to Lee with regards to nutrition and regaining some of the strength he has lost, hang in there will be thinking of you both.
    Ann

    Hi Chantal,
    I had my j-tube placed during my MIE. For the first three or four days I had pretty bad pain around three inches below where the tube entered my body. The pain continued on and off for the five weeks I had the tube but only the first few days were really painful. I hope Lee is feeling better soon.
    Take care,
    Joel
  • jojoshort
    jojoshort Member Posts: 230 Member
    #4
    Keep us posted
    I've been keeping my fingers crossed for you both.
    Jo-Ann
  • birdiequeen
    birdiequeen Member Posts: 319
    #5
    Chantal,
    Hope Lee is feeling
    Chantal,

    Hope Lee is feeling better today and they have controlled any remaining pain.

    Take Care!
  • cher76
    cher76 Member Posts: 292
    #6
    Chantal,
    How was Lee's tube
    Chantal,
    How was Lee's tube placed? When they attempted to place the g tube in Rickie the first time, he complained of pain at the insertion site. This was when they went down through his throat and esophagus into his stomach and tried to push the tube out through the wall of the stomach and abdomen. They tried several times unsuccessfully, so we assumed that was why he was so sore. We went back two weeks later and they inserted the PFG tube using interventional radiology, and he didn't have any trouble. Tell Lee to hang in there, it will get better!
    Cheryl
  • Daisylin
    Daisylin Member Posts: 365
    #7
    cher76 said:

    Chantal,
    How was Lee's tube
    Chantal,
    How was Lee's tube placed? When they attempted to place the g tube in Rickie the first time, he complained of pain at the insertion site. This was when they went down through his throat and esophagus into his stomach and tried to push the tube out through the wall of the stomach and abdomen. They tried several times unsuccessfully, so we assumed that was why he was so sore. We went back two weeks later and they inserted the PFG tube using interventional radiology, and he didn't have any trouble. Tell Lee to hang in there, it will get better!
    Cheryl

    pain
    I'm not sure how exactly the tube was placed, perhaps when he gets out of the hospital he can write an update. He was 'awake' for the entire procedure, so he watched most of it. From what I know they put the hole where the g tube would be, but from there they feed the tube into his small intestine. The doctor said that if we wished in the future, for whatever reason it could easily be changed to a g tube instead of a gj tube. He had severe pain for most of the night, and kept the nurses running with demerol shots and gravol and hydromorph codone. He ended up vomiting at one point and as a result, they removed the drainage tube that was going from his stomach to a tube out his nose. He felt much relief after that was removed. The pain seemed to be much more manageable today, he was still feeling some pain, but not in agony like last night.

    They ran an x-ray last night, to see if there was anything amiss, but thankfully there did not seem to be any issues. They started his first feeding this afternoon, and hope to send him on his merry way by Thursday. The nurse gave us a brief tutorial on how the thing works, and I think Lee felt much more confidant after that. It seems pretty simple..... Even I can do it, lol.
  • mruble
    mruble Member Posts: 174
    #8
    Daisylin said:

    pain
    I'm not sure how exactly the tube was placed, perhaps when he gets out of the hospital he can write an update. He was 'awake' for the entire procedure, so he watched most of it. From what I know they put the hole where the g tube would be, but from there they feed the tube into his small intestine. The doctor said that if we wished in the future, for whatever reason it could easily be changed to a g tube instead of a gj tube. He had severe pain for most of the night, and kept the nurses running with demerol shots and gravol and hydromorph codone. He ended up vomiting at one point and as a result, they removed the drainage tube that was going from his stomach to a tube out his nose. He felt much relief after that was removed. The pain seemed to be much more manageable today, he was still feeling some pain, but not in agony like last night.

    They ran an x-ray last night, to see if there was anything amiss, but thankfully there did not seem to be any issues. They started his first feeding this afternoon, and hope to send him on his merry way by Thursday. The nurse gave us a brief tutorial on how the thing works, and I think Lee felt much more confidant after that. It seems pretty simple..... Even I can do it, lol.

    Good to hear
    It's good to hear that Lee's pain has become more manageable. It's so hard seeing our spouses in pain. Chad doesn't often have pain but he had chemo today and had very bad cramping today. Hoping to stay out of the ER tonight!

    You're right about the feeding tube -- it's a piece of cake! Hope the added nutrition gives him some much needed strength!

    Mary
  • jojoshort
    jojoshort Member Posts: 230 Member
    #9
    Daisylin said:

    pain
    I'm not sure how exactly the tube was placed, perhaps when he gets out of the hospital he can write an update. He was 'awake' for the entire procedure, so he watched most of it. From what I know they put the hole where the g tube would be, but from there they feed the tube into his small intestine. The doctor said that if we wished in the future, for whatever reason it could easily be changed to a g tube instead of a gj tube. He had severe pain for most of the night, and kept the nurses running with demerol shots and gravol and hydromorph codone. He ended up vomiting at one point and as a result, they removed the drainage tube that was going from his stomach to a tube out his nose. He felt much relief after that was removed. The pain seemed to be much more manageable today, he was still feeling some pain, but not in agony like last night.

    They ran an x-ray last night, to see if there was anything amiss, but thankfully there did not seem to be any issues. They started his first feeding this afternoon, and hope to send him on his merry way by Thursday. The nurse gave us a brief tutorial on how the thing works, and I think Lee felt much more confidant after that. It seems pretty simple..... Even I can do it, lol.

    Relieved that Lee was getting some pain relief. What a tough time it must be for you both. As usual, Chantal, you're upbeat and on top of things. I'm sure you'll be able to manage the feeding tube easily.
    And then you won't have to worry about his getting nutrition and hydration. Whew.
    Keep your chins up,
    Jo-Ann
  • LeeinLondon
    LeeinLondon Member Posts: 103
    #10
    jojoshort said:

    Relieved that Lee was getting some pain relief. What a tough time it must be for you both. As usual, Chantal, you're upbeat and on top of things. I'm sure you'll be able to manage the feeding tube easily.
    And then you won't have to worry about his getting nutrition and hydration. Whew.
    Keep your chins up,
    Jo-Ann

    Hi
    Posting live from my iPad in my hospital bed, Chantal summarized it pretty well. Huge pain yesterday, half as bad today. The tube is nowhere as daunting as I thought it would be, so I'm feeling more optimistic.

    Lee
  • TerryV
    TerryV Member Posts: 887
    #11
    Sounds just like Nick's tube
    From what you describe, that's just like Nick's J-tube. Even down to the placement. He had a fair bit of pain for a few weeks following placement, but stomach muscles aren't used to being messed with, so it's understandable.

    Be very cautious of bumping the durn thing. I've seen Nick crumble if he bumps it. There was a day when he was wandering with his feeding backpack on and stepped on the feeding tube from the bag. He said that he came up with a few new curse words that day.

    Once all the regular bandages (if there are any) come off, Lee may find comfort in "taping" the "tail" of the J-Tube down with a bandaid. Something that gives flexibility but still confines the tube from getting hooked on or hitting anything.

    Also beware nurses that think the J-Tube has been in place longer than it has. Our 1st week in patient - he had the tube maybe 2 weeks - a nurse came in to clean it prior to feeding. She moved the whole J-Tube, base and all, to about 180 degrees from his body. The durn stitches were still in. He was livid!

    Best of luck to you both! The J-Tube can be a real godsend, and yes, it is easy to use :)

    Terry
    Wife of Nick, Stage 3

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