Feeding Tube to Eating

str8andlvl
str8andlvl Member Posts: 7
edited March 2014 in Head and Neck Cancer #1
I completed radiation therapy the last week of September 2001 and 'am just now able to take small sips of liquid. There is no pain involved but swallowing is difficult. Is there a way to transition from liquids to solids in order to get this feeding tube out of me?

Jeff

Comments

  • ilevin
    ilevin Member Posts: 24
    #2
    Have you worked at all with a therapist who specializes in swallowing? I had a speech therapist work with me for a couple of months (after already not having eaten for 3 months) before I was able to drink much of anything. I was able to convince the Dr. to take the tube out when I was drinking enough Ensure even though I wasn't eating much solid. The solids took longer but the best advice I got was to just keep trying something every day. I still don't know that I'd call much of what I eat "solid" I eat a lot of mashed potatoes and soups. I ate a very small amount of chicken tonight after I pureed it and covered it with sauce to make it easier to swallow. As much as I used to love to eat, I had totally lost interest during my treatment and really had to work at learning to eat again in spite of pain and lack of (or worse unpleasant) taste.
    Ilene
  • str8andlvl
    str8andlvl Member Posts: 7
    #3
    ilevin said:

    Have you worked at all with a therapist who specializes in swallowing? I had a speech therapist work with me for a couple of months (after already not having eaten for 3 months) before I was able to drink much of anything. I was able to convince the Dr. to take the tube out when I was drinking enough Ensure even though I wasn't eating much solid. The solids took longer but the best advice I got was to just keep trying something every day. I still don't know that I'd call much of what I eat "solid" I eat a lot of mashed potatoes and soups. I ate a very small amount of chicken tonight after I pureed it and covered it with sauce to make it easier to swallow. As much as I used to love to eat, I had totally lost interest during my treatment and really had to work at learning to eat again in spite of pain and lack of (or worse unpleasant) taste.
    Ilene

    Thanks for the reply Ilene. I have not worked with a therapist but like you, I make it a point to drink, albeit sips, at least 20 times a day. As a result, the sips are becoming larger. It is still difficult to swallow but there is no pain.

    Your reference to a speech therapist is interesting and is the second time I have read a reference to this. Just for kicks I began an exagerated rendition of the alphabet and it seems to help; AAAA, BBBB, CCCC, DDDDD, LOL.

    This protracted process is driving me crazy as my sense of taste and smell is very acute. I can't wait to dive into a plate of spaghetti and meatballs!

    Moreover, I want to get this tube out of me so I can head back to the gym to put the 20 pounds of muscle I lost back on. At 170 I feel like a skeletor, and look like one too, LOL.
  • phattpig
    phattpig Member Posts: 29
    #4
    str8andlvl said:

    Thanks for the reply Ilene. I have not worked with a therapist but like you, I make it a point to drink, albeit sips, at least 20 times a day. As a result, the sips are becoming larger. It is still difficult to swallow but there is no pain.

    Your reference to a speech therapist is interesting and is the second time I have read a reference to this. Just for kicks I began an exagerated rendition of the alphabet and it seems to help; AAAA, BBBB, CCCC, DDDDD, LOL.

    This protracted process is driving me crazy as my sense of taste and smell is very acute. I can't wait to dive into a plate of spaghetti and meatballs!

    Moreover, I want to get this tube out of me so I can head back to the gym to put the 20 pounds of muscle I lost back on. At 170 I feel like a skeletor, and look like one too, LOL.

    Jeff,

    Not to rain on your parade, but I have had my tube for two years now, and I still have trouble swallowing. But the speech therapist is a good idea, talk to your doctors about it.They can recommend one to you, or even set up the treatments. The one I had worked with me for almost a year. My biggest problem was the excessive swelling I had in my throat. I am eating some creamy soups, and a lot of mashed potatoes.

    I know what you mean about feeling like a skeleton, I was at 320 pounds when I started my treatments, I am now down to 172 pounds. But, I do feel a lot better with out the extra person tagging along.

    Good luck to you.

    John
  • str8andlvl
    str8andlvl Member Posts: 7
    #5
    phattpig said:

    Jeff,

    Not to rain on your parade, but I have had my tube for two years now, and I still have trouble swallowing. But the speech therapist is a good idea, talk to your doctors about it.They can recommend one to you, or even set up the treatments. The one I had worked with me for almost a year. My biggest problem was the excessive swelling I had in my throat. I am eating some creamy soups, and a lot of mashed potatoes.

    I know what you mean about feeling like a skeleton, I was at 320 pounds when I started my treatments, I am now down to 172 pounds. But, I do feel a lot better with out the extra person tagging along.

    Good luck to you.

    John

    Wow, John -- you went from offensive tackle to wide receiver the hard way! I see my doctor next week and I'll bring up the subject with him. He thinks I'm progressing well but of course all of this is not fast enough for me.

    I bet you're getting pretty creative with the soup and mashed potatoes. LOL.
  • jleider
    jleider Member Posts: 4
    #6
    Jeff,
    One of the people who responded mentioned therapy to learn to swallow. I went to a speech specialist for this purpose after my larynx was removed last August. I started therapy about 6 weeks after surgery and the therapy took another month or so. I was then able to have my peg tube removed and I have been eating whatever I want since. Swallowing is dfferent but you get used to it. I remember thinking at the time that I would never eat normally again. Thankfully that is not the case.
  • str8andlvl
    str8andlvl Member Posts: 7
    #7
    jleider said:

    Jeff,
    One of the people who responded mentioned therapy to learn to swallow. I went to a speech specialist for this purpose after my larynx was removed last August. I started therapy about 6 weeks after surgery and the therapy took another month or so. I was then able to have my peg tube removed and I have been eating whatever I want since. Swallowing is dfferent but you get used to it. I remember thinking at the time that I would never eat normally again. Thankfully that is not the case.

    Hi jleider,

    Thanks for the feedback. That is very encouraging news. I guess I'm going to therapy. I have to get this peg out of me to get back on flying status. It's interesting -- the better I feel, the more bored I become and the less patient I am.

    Jeff
  • Unknown
    Unknown
    #8
    It was about 6 months after radiation until I got the peg out. I just started with very small amounts of food mostly soft things, easy to swallow. The I had a baruim swallow test with speech theapist to see if I was ready to swallow and have the tube out. And the answer was yes. The only thing i had and still have psoblems with is pills, The tube was removed I eat most things and I crush all my pills or get liquid meds. Take care and good luck.
  • davidcra
    davidcra Member Posts: 1
    #9
    Jeff,
    I have been out of radation for about 14 weeks and am eating soft foods and it is still very difficult. I also have a feeding tube which I use. Have had mine since thanksgiving of 2001 and will probably have it for a few more months. The effects of the radation take time to heal, not to mention learning to swallow again. I get very frustrated with the process but we have to keep going. We will get back to solid foods but it may take a while. Some have said at least a year.
    Keep the faith.
    David
  • crabldy
    crabldy Member Posts: 4
    #10
    ilevin said:

    Have you worked at all with a therapist who specializes in swallowing? I had a speech therapist work with me for a couple of months (after already not having eaten for 3 months) before I was able to drink much of anything. I was able to convince the Dr. to take the tube out when I was drinking enough Ensure even though I wasn't eating much solid. The solids took longer but the best advice I got was to just keep trying something every day. I still don't know that I'd call much of what I eat "solid" I eat a lot of mashed potatoes and soups. I ate a very small amount of chicken tonight after I pureed it and covered it with sauce to make it easier to swallow. As much as I used to love to eat, I had totally lost interest during my treatment and really had to work at learning to eat again in spite of pain and lack of (or worse unpleasant) taste.
    Ilene

    May I ask when they took your feeding tube out did they close the hole or let it close by it's self? And if they did not close it how long did it take to close on it's own.
  • ilevin
    ilevin Member Posts: 24
    #11
    crabldy said:

    May I ask when they took your feeding tube out did they close the hole or let it close by it's self? And if they did not close it how long did it take to close on it's own.

    The hole closed by itself. The doctor put a pressure bandage on and said that I might see some seepage the first day - it turned out to be minimal. My husband changed the dressing for me after 24 hours and it looked fine. The doctor told me not to take a bath (showers ok) for a few days to make sure it was completely closed. I didn't have any problem after it was removed. They had to tug a little to get it out which was uncomfortable but I was so glad it was coming out that I didn't care very much.

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