Video swallow

donfoo said:

Road back is no motorway

For most the road back is twisty and with potholes. Every one has their own unique road back so don't feel like you are worse of than most. Getting back to work is a huge milestone. It will be hard and tiring but there is nothing better than having structure to get you up and out of the house and engaging in something other than your illness. Work is a wonderful lifeline to a new normal. Good luck, Don

A while back, I also did the video swallowing test.  That is when we discovered my aspiration problems.  Am curious about the sphincter muscle.  That may be the cause of some food not going down.  If that is your problem, please relay information back and the treatment recommended.

It’s not so bad, I know the feeling but after a while you get use to the new normal of having to eat with the PEG. I still get a feeling now and then to put things in my mouth to see if I can taste them, I guess that is normal. But I find I just don’t have a craving anymore for anything, it is all food and all taste the same “cardboard”. I am glad to hear you are going back to work, that is the most positive thing you can do. For me it is a way of telling myself I am still as good as I always was, or as I tell my wife at lease I am good for something…

Take care and keep strong

God Bless

Tim Hondo

Hi Matt,

you had a comment that it took you 7 months to eat. How about your Saliva production? When did it come back? I have very dry mouth with little foamy saliva. My mouth gets soared using even smoothies. Can you tell us about your experiences on how to stimulate saliva production? Tried things like Gum, but doesn’t help much. Can you share what did you practice to improve your eating? In my case, it is 7 months post radiation & 5 months post chemo. Still have trouble swallowing. I can only eat liquid shake. Have fear not being able to resume eating regular food and regain the swallowing function back. 

laleh said:

Swallow and Saliva

Hi Matt,

you had a comment that it took you 7 months to eat. How about your Saliva production? When did it come back? I have very dry mouth with little foamy saliva. My mouth gets soared using even smoothies. Can you tell us about your experiences on how to stimulate saliva production? Tried things like Gum, but doesn’t help much. Can you share what did you practice to improve your eating? In my case, it is 7 months post radiation & 5 months post chemo. Still have trouble swallowing. I can only eat liquid shake. Have fear not being able to resume eating regular food and regain the swallowing function back. 

Laleh,

I did not eat (seriously) for 7 months, not for the inability to swallow or lack of saliva, but because most foods felt terrible, I could not stand the texture of most foods.  From day one I was always trying foods,  meat, potatoes, pasta and bread were all awful, but sweet corn tomatoes and Crystal light ice tea were all great (go figure).  After a brief discussion with my parents about my condition I put a can of Crisco shortening on the table and said “this is what most food feels and tastes like to me”.  I use to carry an Igloo cooler filled with protein drinks and bottled water.  Then one day, a switch got flipped in my brain and food felt ok again.  I now eat and drink anything I want and at 22 months post my taste is still slowly improving, but it has a way to go.

Dry mouth, still get it, but I now stray further from my water bottle.  The days of tearing into a bag of chips without drink I think are over.  I take Xylimelts before bed and when I don’t want to be constantly using a water bottle.  Saliva is constantly improving.  Hard candy and gum help some.

As for swallowing, I started reading the H&N posts about a1 ½ months before treatments and the most important thing I learned was drink, swallow, drink, swallow.  I just calculated (estimate) that I have consumed 765 gallons of liquids since I started this journey.  Swallowing was trying at times, but never not doable.

My taste, food, saliva, dry mouth, hydration & swallowing story in 250 words.

Matt

laleh said:

Swallow and Saliva

 

Keith and Math, So many thanks to both of you for sharing your story. I have another question.  I am still wondering how long does it take to transit from smoothies to a regular solid food or at least to eat something different than liquid. Another problem, I am not even able to wallow a small pill. Is that normal?

Laleh, before I was able to eat anything comfortably ( without paid) was early Nov and my last treatment was mid June.  Have you tried some real soft foods like baked potatoes, broiled fish, really steamed vegetables, scrambled eggs, yogurts, veggie soups, etc?    

it took quite a while before I could swallow a pill but eventually it worked!    Keep the faith and keep trying some really soft foods to start.   Expand from there and it will get better, but slowly.  

Good luck,

keith

CivilMatt said:

laleh

Laleh,

I was never not able to drink, swallow or eat food.  It was just that it felt awful and tasted bad that I chose not to.

The switch from smoothies to eating was over night for me.

There were times during treatments when swallowing was a challenge, but I kept drinking water.

I also was sampling foods constantly, because I wanted to know the minute conditions changed.  As mentioned above, some foods tasted good from the start, so keep trying.

Hungary right now, but going to bed good night.

Matt

I think you have to be able to pass the swallow test and get approval before you can start trying anything. Otherwise, you can run the risk of aspirating. I never did pass the actual swallow test but got the Surgeon's ok to start eating. Several of us found that using milk to get food/pills down, early on, was beneficial. Personally, I never lost my sense of taste but after 2 years, I still can't do much spice. Have learned to adapt, ex. mild taco sauce and lots of sour cream to offset so I can still enjoy tacos. And homemade chili with just a pinch of seasonings. Had gingerbread last night but loaded down with Cool Whip or it would not have been doable. I still continue to use Magic Mouthwash on occasion. I went for a long time where I had to have things at room temp but that has passed. Eggs, any which way, are a good start.    

Stoppers 4 for dry mouth helps temporarily. It took me months before I could leave the house without my water bottle. I still keep one in my car and one in my purse but can finally go long periods of time without.

Good luck