Who has swallowing issues and what do you eat?

Jeff2159
Jeff2159 Member Posts: 108
in Head and Neck Cancer #1

Was on a g-tube for 10 months having radiation and chemo at beginning of year and then recovering from the ordeal. My last surgery on my tongue left me with maybe half of it but a good deal of muscle and tissue was taken underneath and floor of mouth so I have a exposed area along my right side of gum line and teeth. My tongue is also sewed to floor of mouth so I can barely stick tongue past front of teeth or move it much side to side. Swallowing and speech are a problem but I wear a retainer to lower my pallet and help with these issues. I have made progress since having the g-tube pulled out in Sept and drink liquids slowly. I have to puree all my food with a vitamix blender and have found gerbers baby oatmeal to be a life saver as it is quick and easy to make whereas regular oatmeal gets stuck in my throat. I cannot swallow pills except for a small thyroid pill, all others get stuck. Yougurt is ok but if it has fruit in it, I have to avoid it as it will get stuck. Just bought Hormel's thick and easy purees which microwave in 1 minute, will see how they taste and or go down. Anyone else have a similar problem and suggestions?

 

Jeff

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
    jeff, sorry to hear you have

    jeff, sorry to hear you have so many problems.  my last rad tx was 10/22/09.  i still have a swallow issue and will forever.  all my pills, no matter how small get stuck.  food also gets stuck.  i have had my throat stretched many times.  it is time to do it again but i am putting it off until it gets worse.  i'm just so tired of having it done.  it only works for about a month and then everything gets stuck again.  have you had your throat stretched (dilated)?  if not, that is an option you can discuss with your doc.  I wish you the best and hope your swallowing gets much better.  Merry Christmas and Happy, Healthy New Year.

    God bless you,

    dj

  • lornal
    lornal Member Posts: 428
    #3
    trouble swallowing

    Do you have trouble swallowing because the tounge doesn't cooperate or because the esophagus is closing up?

    Like DJ, I have to get mine dilated too.  My issues just popped up this year (I finished treatment in 2007).  13 times since mid-April, and I'm going backwards.

    I did end up with a feeding tube because I was getting dehydrated.  Taking my meds about killed me.  But, now I can stay hydrated, get nutrition, and take my meds!  (And, that damn thyroid pill was the worst offender!)

    DJ - you get a month out of dilation - that's great.  I had one the day before Thanksgiving - and was able to eat soft food for 2 days.  That one actually lasted 6 days - and I could actually feel things tighten up as I was eating my sweet potato pie (filling and whipped cream only) on that 6th day.

    So, I had it done again yesterday.  No such luck with eating this time.  My work Christmas party is tomorroww.  I made cranberry jelly with the hope I can eat it tomorrow. 

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    Hi Jeff

    You are pretty much describing me here.  Between two sets of rads, and resection/reconstruction of the floor of my mouth, my descripiion and yours are pretty much the same.  I am two years out from completion of treatment, and am pretty much on a liquid diet.  Trismus limits my opening.  I've lost the chewing muscles anyway.  My tongue is immobile from the surgery, and the rads have really frozen up my throat.

    There are a lot of people here with tube experience, but not so many like you and me.  There aren't any  books I've found that tell us how to do this either.  I suppose half my calories are ensure/boost and the other half are blender derived. I'm not interested in a bunch of low calorie blender foods, as keeping my weight up is a challenge.  So I just experiment with running whatever food I'm preparing for the rest of the family through the blender, thinning it enough to drink it, and trying it to see if I can palate it.  Things sure don't taste the same when they are blender consistency, but that's ok. 

    I sometimes make eggs/sausage, country gravy for breakfast.  Looks pretty wierd but tastes ok.  Pasta based food is fine for supper.  Tonight I made a chicken/smoked sausage gumbo.   I'll try some of it and see. 

    To be honest with you, I don't eat for enjoyment any more.  Its just another life fuction.  I eat as a necessary thing.  I do go out to restaurants socially, but I often don't order.  It surprised me how many restaurants don't even have a blender, lol.

     

    best to you

     

    Pat

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    lornal said:

    trouble swallowing

    Do you have trouble swallowing because the tounge doesn't cooperate or because the esophagus is closing up?

    Like DJ, I have to get mine dilated too.  My issues just popped up this year (I finished treatment in 2007).  13 times since mid-April, and I'm going backwards.

    I did end up with a feeding tube because I was getting dehydrated.  Taking my meds about killed me.  But, now I can stay hydrated, get nutrition, and take my meds!  (And, that damn thyroid pill was the worst offender!)

    DJ - you get a month out of dilation - that's great.  I had one the day before Thanksgiving - and was able to eat soft food for 2 days.  That one actually lasted 6 days - and I could actually feel things tighten up as I was eating my sweet potato pie (filling and whipped cream only) on that 6th day.

    So, I had it done again yesterday.  No such luck with eating this time.  My work Christmas party is tomorroww.  I made cranberry jelly with the hope I can eat it tomorrow. 

    6 days, wow, i will stop

    6 days, wow, i will stop complaining....lol.  Have a Merry Christmas and a Happy, Healthy New Year.

    God bless you,

    dj

  • lornal
    lornal Member Posts: 428
    #6
    debbiejeanne said:

    6 days, wow, i will stop

    6 days, wow, i will stop complaining....lol.  Have a Merry Christmas and a Happy, Healthy New Year.

    God bless you,

    dj

    Merry Christmas to you too. 

    Merry Christmas to you too.  Praying for a better 2014 for all!

  • jim and i
    jim and i Member Posts: 1,788 Member
    #7
    So sorry you are not able to

    So sorry you are not able to eat. Jim has had his tube for two tears now. At first the swallowing wasn't an issue the taste was the problem. Taste still is somewhat of a problem now but swallowing has become an issue. He still has very little saliva and the mucous is a problem. I think he avoids eating  because it makes the mucous worse. He has problems with choking on pills, mushrooms and beans. When he goes out to restaurants (which we have started avoiding) he gets soup or just does without. He has resigned himself to a life of tube feedings. He does drink a whey protein drink every morning. It keeps his weight up and provides some muscle retention. I pray you can find tasty alternatives.

    Debbie

  • Jeff2159
    Jeff2159 Member Posts: 108
    #8
    Thanks all for your comments

    I just had the hormel thick and easy lasagna and it was ok for a quick meal at the office. Luckily I have no issues with saliva or taste. Actually my taste buds are off the chart and every flavor is magnified. My wife wants to add salt and pepper or other spices and I have to tell her cut everything by 75%. Its trial and error right now for both of us. The taste of the lasagna still lingers in my mouth for an hour or two even after washing my mouth out. I have not had my mouth dialated and my therapist mentioned it but I think they want to wait to see if I can make additional progress on my own. I think there is some lymphodema issues going on too with my throat not to mention the necrosis I have going on with one of my molars.

    I would like to be able to swallow pills as I also have mets to my lungs from kidney cancer which happened in march 2012 and the mets april 2012. I took sutent for 2 cycles (had to stop as side effects tore recent surgeries of my mouth open)and 98% of the mets went away. Recently a couple nodes have enlarged and a new small one appeared so they put me on avastin (intervenously) and I will find out in Jan if this drug will have the same success as sutent. It is amazing how many restarants don't have a proper blender. Was at lunch with a bunch of friends in 2 weeks ago in San Francisco and they had nothing. At my golf club, I bought them a vitamix so that I would be able to enjoy food there. Being disabled can I demand every restarant have a blender? LOL. Anyhow everyone have a great Christmas and new year

    Jeff

Discussion Boards