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For those with swallow issues

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Hey guys and gals,

 

if you have or had issues and webt through any treatment for Dysphagia, when do you know to try harder things? I am so bored with diet would live some tips!

thanks,

 

Rachel

backachedp
Posts: 124
Joined: Oct 2009

Hey if you find out anything PLEASE let me know.  Bob is getting worse since they tried to open his throat up more...still refusing the Feeding Tube...he has been getting scrambled eggs down and malts but chokes and aspirates the entire time even in the morning when he takes his B/P Med and Thyroid Med just a swallow of water and it starts...I called our Insurance Company to verify he was covered for the Speech Threapist and had it on speaker phone and of course they said he could have 90 visits a year...got the EOB and it said DENIED....I hope you are doing better....keep me posted..I can't believe 2 days in a row I was able to sign in and write on here!!!  YEA maybe my computer issue is done.

Take care

Deb

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

deb, what does aspirates mean?  does it mean the food comes thru ur nose?  that happened to me recently and i couldn't finish the meal b/c every bite came right out my nose.

dj

backachedp
Posts: 124
Joined: Oct 2009

Bob lost everything that was working in his throat from Radiation so everything he swallows goes into his Lungs...it just slids down there is nithing stopping it since nothing works...thus the choking choughing Pheumonia comming alot they want to put a feeding Tube in as it is BAD and could become much more serious but he won't give in YET....it helps a tiny bit if he tilts his face towards his neck when he tries to swallow...he has had a heck of a time...they tried to open the bottom of his throat May 20th and now he can't get his phlem up where as before he could at least do that.  Aspiratating is scarry...he has had liquids come out his nose but not many times...and it has been a while...I just wish he could eat and drink w/o choking choghing and aspirating...sometimes I am pounding on his back....I guess the new normal...but not a good one at least the Speach Therapist is keeping a close eye on him but he does NOT want the Feeding Tube back...Had hopes the Surgery would help but didn't.

hwt's picture
hwt
Posts: 1834
Joined: Jun 2012

If you aspirate, it goes in your lung and the lungs don't like anything but air. Rachel, when my Mom had issues with aspiration while in the hospital they gave her a special diet and she had a thickening agent added to everything she drank. If memory serves me right, everything was pureed. It didn't take long and she returned to normal eating. 

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

thx hwt.  boy, was i way off.

dj

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Hwt, 

i cant find many purees i like.  I can eat spaghetti and sauce pureed together, can make ok pureed pancakes, can eat mashed potatos drowned in gravy and smoothies(fruit). Custard(not icecream old fashioned egg based custard or flan). But i am bored and want real, just to heR your Mom returned to normal makes me feel good.

deb,  aspiriting is exactly like what hwt said is food going straight to lungs via wind pipe.  There are many reasons it happens, mine is soft pallate is paralized and nothing was shutting to protect my wind pipe at first my vocal cords werent strong.  I have fibrois or scar tissue lining my throat so my open window isnt that long.  If they scrape it more scar tissue comes back.  Sometimes the food coming out your nose is eating to fast for the food to pass through esphagus, therefore it builds up in throat and pushes out through nose.  Mine no longer does that, but i dont k ownifnit had to do with aspirated as much as eating normal which i cant do.  Try eating slower jites and swallow hard andnif concerned get checked.

backdrop(sorry i know u but not log name correctly),  HE NEEDS A TUBE if he keeps get pnuemonia it will kill him, they were very adiment about that.  Trust me i am 42, already had neck disection, teeth are a mess, deaf and talk funny, last thing i wanted was tube, but i wanted to live more than anytjing so in it went.  Now in best shape of my life and cant show itnoff cause of my darn tube, oh well! Lol. Please help him to accept tube!

Rachel

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

rachel, thank u 4 the info.  i'm sorry u can't eat normal.  i was getting upset b/c my food gets stuck often but that problem seems small compared 2 u.  i can't believe all the damage rad does.  it really is sad.

dj

Eddie J
Posts: 23
Joined: Sep 2012

Try to convince him to get a peg tube in his stomach . I have had one since my operation Oct 15 . They are painless in my case had it replaced once and didnt feel anthing he can get the nutrition he needs untill his throat problems and swallowing  get resolved . There is a foundation on tne web its called the OLEY Foundation and is dedicated to peg tube information and has a blog and members as the ACS does good luck .

backachedp
Posts: 124
Joined: Oct 2009

The ENT and Speech Therapist have told him Feeding Tube but they can't force him..thus they are waatching him very closely...he knows it could kill him with the Pheumonias and etc...we were hoping the Surgery would help but it made it worse :(  He is at the Hospital for Appt's usually once or twice a week....I hate Cancer and all it does...he just wants to eat too...I don't eat enough because I feel bad eating in front of him....he hated the Feeding Tube he had...he insisted they take it out long before it ever should have been....he jokes about how it looks like he has a bullet wound in his tummy...at least he usually is keeping in good spirits...he tried the Thick it stuff I bought cases of the Carnation VHC and he just does not drink it anymore...I think well I know he is sick of Dr's and Dr Appt's constantly but like I tell him at least you are ALIVE and I wanna keep it that way.  going on 4 years is a long time but not as long as Rachael....

CivilMatt's picture
CivilMatt
Posts: 2838
Joined: May 2012

Rachel,

While I do not share swallowing problems to such a degree as you do, I can blow a carrot out my nose on occasion.  One thing the H&N site taught me is you read everything everyone does and then you adjust the solution to one’s self.  Try as I might to eat the recommended soft foods, they all tasted and felt terrible.   So, I happily lived on smoothies for 7 months (adjusted for nutrition and happiness).

So good luck in your quest, I promise to send all pertinent information your way, but in the end you just put all your found data into a powerful blender (Vita-mix 5000) and puree the best recipes you can make.  All of us are just a starting point; you got to bring it home.

Matt

hwt's picture
hwt
Posts: 1834
Joined: Jun 2012

Early on I craved a hamburger so got one at Burger King and had my husband run it through the blender. Sounds gross but I could taste each element and everything good in it. Unfortunately, my husband found cleaning out the blender a bit overwhelming so it was my one and only attempt at pureed foods. Maybe a good thing for me as it forced me to continue eating normal foods. I hope you have more options soon.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

The only goid thing about the tube and this process is being forced to eat healthy!  I am dying for for food, but would never complain about the heathly weight loss and lowering of BMI that my ftiends is the silver lining, of course the tube makes certain vlothing not possible but i nake so!  Any reciepes that ate good please forward, i did banana and strawberry smoothuecwas awesome peeling a strawberry(to remove seeds) not so fun, but very good!

rachel

Grandmax4's picture
Grandmax4
Posts: 578
Joined: Dec 2011

to try new foods, after 1 year of eating nothing but soft foods, I tried a teeny tiny piece of pork roast at my daughters..to my amazment I swallowed it with no problems. We went out that evening and I had lobster bisque with baby shrimp on top, no problems..from that point on,it was on...I  now am eating everything except lettuce, for some reason it gets stuck, can live without it. Good luck Rachel, just try to find the courage to take a small bite of something you really want..it makes me angry that you've been through this once and now again..cancer sure isn't fair and neither are the side effects...one thing I ate a lot of while doing soft, was tomato soup ( made with milk) with ritz crackers crushed really fine..it was so good

Michael McDonnell
Posts: 9
Joined: Jun 2013

Hello, i finished 35 radition therapys 9 weeks ago and still am unable to eat, how much longer will i have to wait until i am able to eat food again??

hwt's picture
hwt
Posts: 1834
Joined: Jun 2012

We're each different. Some people never quit eating food throughout tx. Some can eat but everything tastes bad. 9 weeks post, I would encourage you to ask your ONC. Hopefully, it will be soon for you. Can you eat the beginner foods like eggs & soup?

Michael McDonnell
Posts: 9
Joined: Jun 2013

Yeah ok on the beginner foods and havent lost my taste but am looking forward to the good foods like steak! 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Grandma,

today i made a Tombstone Extra cheese pizza for Faith and niece and nephew, couldnt standnit staring at it i wanted it more than anytthing, something in me said take a bite, hoping it was God, i did and chewed alot took a sipnof my diet A&W and down it went no problem, i took one more to make sure not a fluke and again down easy!  Praise God!  Didnt eat the rest i had mashed potatoes and gravy ready but just knowing it worked will keep me trying something everyday till before you knownit i am normal!  Gonna start seeing physicshiatrist to deal with eating and a these issues 12 years later and maybe they can help me with fear of trying!

 

thanks for helping me not be afraid, Rachel

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Yay for you Rachel ! I got so excited for you , just reading this . I can eat almost anything "if" I have something to wash it down ! My problem now is just that nothing taste good . 8 months out of Rads today. Keep trying things .

Peggy

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Hang in there Peggy, salvia might not come back so good, but my taste came back completely, change sone back then, certain fruit was too sweet or acidic, and i could then eat onions, green peppers and broccoli raw.  so hang in!

Duggie88's picture
Duggie88
Posts: 524
Joined: Feb 2010

The best smoothies I know of are the ones I made up as I went along. In the summer months fresh fruit was the best. Down at HUP the street vendor on the corner of Perelman and the parking garage made really good ones. I head down there in a few weeks for a PET scan and just might slug one down.

Unlike Matt I've never shot a carrot out my nose, but I have been known to pull a rabbit out of my hat.

Take care

      Jeff

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Lol Jeff

backachedp
Posts: 124
Joined: Oct 2009

Congrats on eating the Pizza!  I think alot has to do with the Mind....I may well be wrong...Bob tires different things but it is scarry like I said in a post a few days ago if he tilts his chin down to his neck it does help a bit.  Speech Thearist Appt in July I will be going with as he does not like me comming with him because I tell everything when he want's to act like it's ok...they know better as everytime they have shown us the Video they take when he is swallowing...one good thing is the "Swallow Dr" has herself had a Feeding Tube so she is sympathetic and knows what is is like to have one...the ENT and her both meet with us...I did miss 2 Appt's but WILL be going to this next one.  Keep on trying whatever you can Rachael. 

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