Swallowing problems after chemoradiation

Elaineh
Elaineh Member Posts: 21
in Head and Neck Cancer #1

hey guys  I've been offline for s few weeks.  My docs finally decided that to stop my constant pneumonia from aspiration, they would put in another G tube and make me NPO.  So most of you know that means I can't eat or drink anything by mouth. I feed my self Ensuremthru my tube several times a day, and have terrible stomachs pains, and diarrhea.  I'm meeting with a nutritionist tomorrow so maybe she can help with the issues.  I've lost 6 more pounds, so that's 46 lbs since finishing treatment.  PET scan and scopes are negative, thank God.  Has anyone else been thru this. My finished treatment 14 months ago...

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    #2
    Been there

    It took awhile for them to figure out issues with my g-tube this go around.  I could not tolerate jevity and at first struggled a little with the Ensure plus but got on a kangaroo pump and started very slowly, feed rate of 60, worked up to 93 and now 110 sometimes. I did ok with it a few months then, bam, diarreha. Struggled then finally GI doc said tube was too close to stomach lining causing irritation, said he sees it everyday. He pulled the tube out about 4 inches and had me put tape around it to keep it there. It was an easy fix. 

  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Elaineh

    Sorry to hear that but living with a PEG tube is not so bad, I been on it now for a little over 3 years, I work and travel just like I use to do and make my food on the road as I go. I carry a NutrBullet with we and blend what ever I feel like eating, its been a life saviors to me and allows me to travel from home for days. Will keep you in prayer that your ability to swallow and not aspirate will get better soon.

     

    God Bless

    Tim   

  • ratface
    ratface Member Posts: 1,337 Member
    #4
    Hondo said:

    Hi Elaineh

    Sorry to hear that but living with a PEG tube is not so bad, I been on it now for a little over 3 years, I work and travel just like I use to do and make my food on the road as I go. I carry a NutrBullet with we and blend what ever I feel like eating, its been a life saviors to me and allows me to travel from home for days. Will keep you in prayer that your ability to swallow and not aspirate will get better soon.

     

    God Bless

    Tim   

    Can you afford to lose the weight?

    Elaineh, much depends on your weight prior to diagnosis. You tell us, can you afford to lose the weight or were you a thin person to start with. Answer this honestly. If you can afford to lose the weight it's probably the only positive side effect of this horrible disease. I lost 50 pounds that I didn't need. So you are right about there. Now on the other hand if you are thin as a rail you need to take this very seriously,  many cancer patients die of malnutrition. Someone who has an appointment with a nutrionists has nothing to worry about. They will figure out a supplement and caloric need based on your personal stats. All you have to do is stick to it. Commercial supplements have specific nutritional values and come in many variations.  My insurance company covered mine and they were delivered to my front door. Are you doing Bolus feedings or gravity or pump feedings? My stomach would hurt if I was too quick with the syringe during a boulos feeding. Try slowing down a bit. I know the tube is depressing but it can save your life right now, take your feeding seriously and you will be fine. Congrats on your clean scans.

  • wmc
    wmc Member Posts: 1,804
    #5
    PET news good...."G" Tube bad.......

    Sorry you are having so much trouble. You have been given some great advice from ones who know, which I really do not. I only had my "G"Tube in for about eight very L o n g Days. Mine went into my intestines, maybe because I had GURD and shomach problems with acid. I didn't do well on the syringe feeding. They wanted 280cc at each feeding And I only could do 150cc then get sick and shake and be very cold. I was ok on slow 24hr feeding but I didn't get along with the syringe. I had lost weight and was down to 126 at the time of surgery and having a Laryngectomy you are NPO for about eight days until the swelling goes down and your throat heals from the seperation of your air way. I even got into big arguments with the nurses that I would NOT do more than 150cc and if I had to go back on machine feeding that was ok as I was not going to take any chance of getting sick and throwing up and maybe do damage to all that  very delicate surgery. They were going to back it back [6"] into my stomach and hope that woukd be better. Thank god I passed the throat swallowing test and no longer NPO, got to do clear liquids. They said I took in two and a half liters that night. I do so hope this does work and you get back to regular feeding. Thoughts and prayers going your way....

    Bill

  • MJ70
    MJ70 Member Posts: 75
    #6
    swallowing

    I have been on the tube for the last year...Been cancer r free for 11 years and after 10 years i finally got tired of going in the Hospital with Aspriating pneumonia..HOndo advice i got a Mikey Button..Put a newon in last night...24  fr...Can not tell the difference from a 22 fr and the 24 fr.. i feed with the bolus technigue ...60 cc syringe ,,Have more prblems with consipation....

    I use the formula frrm Comed ...seems to work find ..I use the Nutrem Brand ...it is 500 calories per can..talk to your medical people as it is hard on some peple to tolerate.. they have  several kinds ..I do miss being able to eat out with  friends as i only drink sips of water..I have a vitamix  that will chew up  anything and add various real food alolng with the formula..Good Luck..

     

    Mel

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #7
    Hondo said:

    Hi Elaineh

    Sorry to hear that but living with a PEG tube is not so bad, I been on it now for a little over 3 years, I work and travel just like I use to do and make my food on the road as I go. I carry a NutrBullet with we and blend what ever I feel like eating, its been a life saviors to me and allows me to travel from home for days. Will keep you in prayer that your ability to swallow and not aspirate will get better soon.

     

    God Bless

    Tim   

    PEG tube, the sequel

    I had a PEG tube during treatments 6 years ago and tolerated it well. It came out in 3-4 months.  Tomorrow I get another one inserted, due to my second major jaw surgery in 14 months.  This one will likely be there for a long time, so if anyone has good recipes for pureed foods to put down the tube, please let me know.  I don't want to exist only on Isosource, etc. during this time, so am willing to experiment a bit.

    mike

     

  • Elaineh
    Elaineh Member Posts: 21
    #8
    MJ70 said:

    swallowing

    I have been on the tube for the last year...Been cancer r free for 11 years and after 10 years i finally got tired of going in the Hospital with Aspriating pneumonia..HOndo advice i got a Mikey Button..Put a newon in last night...24  fr...Can not tell the difference from a 22 fr and the 24 fr.. i feed with the bolus technigue ...60 cc syringe ,,Have more prblems with consipation....

    I use the formula frrm Comed ...seems to work find ..I use the Nutrem Brand ...it is 500 calories per can..talk to your medical people as it is hard on some peple to tolerate.. they have  several kinds ..I do miss being able to eat out with  friends as i only drink sips of water..I have a vitamix  that will chew up  anything and add various real food alolng with the formula..Good Luck..

     

    Mel

    Mikey button

    I had never heard of the Mickey tube so thanks for that info.

  • Elaineh
    Elaineh Member Posts: 21
    #9
    ratface said:

    Can you afford to lose the weight?

    Elaineh, much depends on your weight prior to diagnosis. You tell us, can you afford to lose the weight or were you a thin person to start with. Answer this honestly. If you can afford to lose the weight it's probably the only positive side effect of this horrible disease. I lost 50 pounds that I didn't need. So you are right about there. Now on the other hand if you are thin as a rail you need to take this very seriously,  many cancer patients die of malnutrition. Someone who has an appointment with a nutrionists has nothing to worry about. They will figure out a supplement and caloric need based on your personal stats. All you have to do is stick to it. Commercial supplements have specific nutritional values and come in many variations.  My insurance company covered mine and they were delivered to my front door. Are you doing Bolus feedings or gravity or pump feedings? My stomach would hurt if I was too quick with the syringe during a boulos feeding. Try slowing down a bit. I know the tube is depressing but it can save your life right now, take your feeding seriously and you will be fine. Congrats on your clean scans.

    Weight loss

    Hi RatFace!  I was about 20 lbs overweight so I'm truly just 25 lbs underweight now.  The nutritionist I saw was immensely helpful and the formula I'm on now, peptagen, I seem to be tolerating better.  I really appreciate yours and everyone input.  It's so great to know you are not alone in these struggles.

  • Elaineh
    Elaineh Member Posts: 21
    #10
    G tubes

    I want to thank everyone for their kind and helpful comments.  It's kinda crazy since I am a physician and have dealt with patients with cancer for years, but somehow I thought that if I coule just get through treatment my life would go back to normal.  I didn't consider that I might have to completely redefine MY personal NORMAL!  Hearing you guys describe your struggles gives my great strength and I'm grateful for that.

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