Water and swallowing

Clearblue
Clearblue Member Posts: 186
edited July 2011 in Head and Neck Cancer #1
Anyone who has had a partial larengectomy knows that liquids and water are the most challenging to swallow without having it go into the lungs.


Wifey has tried water thickner powder, which she says is like swallowing bad tasing slime.

ANY IDEAS as to ways to get water/liquid intakes by mouth to ensure hydration.

I know juicing is good, but its liquidy like water .
She feels she could get rid of the j-tube if it werent for the water issue.
Clear

Comments

  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Just will throw out some
    Just will throw out some ideas here, as I don't really drink water at all. I keep it next to my bed and in my bag to wet my mouth with tiny sips, but I never just drink water. Remember that foods count towards the water intake as well. I know normal people get most of their hydration by drinking it. I definitely get a lot from what I eat as well, so that it's easier for me to swallow. Some ideas:

    1. Intstead of juice (since juicing is thin) how about smoothies of whole fruit and coconut water to mix. Coconut water is very hydrating. Full of essential electrolytes. Smoothies is general are a good idea. Nutrition and hydration.

    2. Milk? I really don't drink anything that isn't at least the consistency of whole milk. I even steep my tea in whole milk.

    3. Ices, ice cream, milk shakes?

    4. Yogurt.

    5. Add water to foods, I use almost twice as much water in my oatmeal prep. Makes it softer and easier to swallow for me. Grains get nice and plump, and it's not too thick. Or jook? Google for recipe. Soups. Big fan of soups.

    6. Gelatin?? Sweet jellies like Jello or savory, like aspics....

    7. Fruits and veg with high water content, like

    Watermelon
    Cantaloupe or other melon
    Apples
    Oranges??? Not sure if they would burn her mouth
    Avocados- and they thicken up stuff brilliantly. I like them sweet or savory. Vietnamese avocado smoothies. Or vegan chocolate pudding rocks. Avocado, banana, cocoa powder whipped in a good blender. Yumo

    Cabbage
    Cucumber
    Lettuce
    Celery
    Zucchini
    Broccoli
    Cauliflower
    Eggplant
    Spinach
    Carrots

    At least that is what I do, since I cannot really swallow thin stuff either.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    find
    I suggest finding a speech pathologist with alot of head and neck cancer experience and history.

    I have had a hard time swallowing liquids for a long time. Three years ago this week they found congronercrosis on my pharynx . The swelling was bad they had a hard time intubating me. Once that was complete they gave me a trach to help with breathing. A couple days and they did a swallow test on me and what they call cookie test, simple water aspirated me. They told me I had to use the thickening agent and make any fluid the consistency of honey. Not what I wanted to hear. I so wanted ice creme or custard but they said no that would melt and become liquid like water, do not do this. The speech pathologist here in town was a huge help, she pretty much only helps those with head and neck cancer. The first thing she told me was do not use straw, too much air and makes it too thin. The second was to swallow strong several times with just a small bit, and when you think you have it down swallow again one or two more times with nothing there. After what was like several months but was only a month they did another cookie test and it was better. I was allowed to thin it up some and continue. Finally two weeks later I was removed of the thickening agent but told to continue with the swallowing several times after you think it is down, do not drink in huge gulps, and absolutely do not drink from a straw.

    I still have some problems from time to time with the aspirations but that is when I take to much in at once. They are not tiny swallows i have but they are not gulps for sure. just a normal mouth full at one time. I still have the trach and will have the rest of my life. just another new normal to convert to again, and for me it is normal now. Frustrating at time but of great value when i have a cold or sinus problems along with allergy's. Oh ya, it is considered the ultimate CP machine... so it is a cordless c pap machine with no batteries plus snoring is no longer an option. :-) God has run me thru his shop for reworking several times and I keep going.

    Find a Speech Pathologist they want you to be better. Oh ya my daughter is a SP but her experience and motivation is not in the field I need, and is in awe of mine SP as am I.

    Just a suggestion.

    It will take time but I know if I can so can your wife/survivor/fighter can also do it.

    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    fisrpotpe said:

    find
    I suggest finding a speech pathologist with alot of head and neck cancer experience and history.

    I have had a hard time swallowing liquids for a long time. Three years ago this week they found congronercrosis on my pharynx . The swelling was bad they had a hard time intubating me. Once that was complete they gave me a trach to help with breathing. A couple days and they did a swallow test on me and what they call cookie test, simple water aspirated me. They told me I had to use the thickening agent and make any fluid the consistency of honey. Not what I wanted to hear. I so wanted ice creme or custard but they said no that would melt and become liquid like water, do not do this. The speech pathologist here in town was a huge help, she pretty much only helps those with head and neck cancer. The first thing she told me was do not use straw, too much air and makes it too thin. The second was to swallow strong several times with just a small bit, and when you think you have it down swallow again one or two more times with nothing there. After what was like several months but was only a month they did another cookie test and it was better. I was allowed to thin it up some and continue. Finally two weeks later I was removed of the thickening agent but told to continue with the swallowing several times after you think it is down, do not drink in huge gulps, and absolutely do not drink from a straw.

    I still have some problems from time to time with the aspirations but that is when I take to much in at once. They are not tiny swallows i have but they are not gulps for sure. just a normal mouth full at one time. I still have the trach and will have the rest of my life. just another new normal to convert to again, and for me it is normal now. Frustrating at time but of great value when i have a cold or sinus problems along with allergy's. Oh ya, it is considered the ultimate CP machine... so it is a cordless c pap machine with no batteries plus snoring is no longer an option. :-) God has run me thru his shop for reworking several times and I keep going.

    Find a Speech Pathologist they want you to be better. Oh ya my daughter is a SP but her experience and motivation is not in the field I need, and is in awe of mine SP as am I.

    Just a suggestion.

    It will take time but I know if I can so can your wife/survivor/fighter can also do it.

    John

    Very interesting to read,
    Very interesting to read, John.

    I had no idea about the straw thing. I use them a lot, but not as much as I used to. My swallows are very, very small though, because of the stricture. I cut my food very tiny, and then swallow minuscule amounts at a time. Hence the 1.4 -2 hr dining experiences. Lol

    Thanks for the info on the ices and ice cream too! Please ignore my suggestion there, then. It won't let me edit. Sorry about that.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member

    Very interesting to read,
    Very interesting to read, John.

    I had no idea about the straw thing. I use them a lot, but not as much as I used to. My swallows are very, very small though, because of the stricture. I cut my food very tiny, and then swallow minuscule amounts at a time. Hence the 1.4 -2 hr dining experiences. Lol

    Thanks for the info on the ices and ice cream too! Please ignore my suggestion there, then. It won't let me edit. Sorry about that.

    do not ignore sweetbloods post
    please do not ignore sweetbloods post, your wife's problem maybe totally different and also yours sweetblood. I was sharing my experience. At good experienced SP will be able to help anyone. I have and so have the nurse's in our local head and neck cancer support group have suggested to doctor's that having a speech pathologist involved no later than half way thru treatments is a must. Many of the new members have asked for it and they have had success, seems like the doctor's are starting to include in the standard care durning and post treatment phases.
    I believe five additional parts of treatment and post treatment are a must above the typical standard of ENT and oncologists. IV fluids twice a week or more, experienced dentist with radiation treatment experience, speech pathologist, mucus suction equipment, the use of tomotherapy equipment for radiation. A nutritionist could very well be added, as well as support group, social worker.

    oh ya add everyone and this csn site to the above list as a must. Love you all

    John