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I Can Eat in Restaurants
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I Can Eat in Restaurants!

 

Jesse Jones

Aloha tubies! I’ve been tube feeding for almost fourteen years now due to radiation and surgery side effects. It had gotten to the point that swallowing was difficult and I was aspirating into my lungs, causing constant infections. I was fifty years old then, I am sixty-four years old now.

 

I’ve been making my own fresh, unprocessed food meals from day one because commercial formulas don’t go down well for me. I had a low-profile button [a skin-level feeding tube] put in and have used it exclusively. I love it, because it gives me total freedom to move when not eating; I am a very active guy.

 

Routines


 Jesse and his wife, Nalani, enjoying a meal (his blenderized) at a favorite restaurant.

 

I’ve always done bolus feeding through standard two ounce syringes. I normally fill four syringes at a time to make it a smoother process. Initially, to fill the syringes I held the syringe with my right hand as I pulled back on the plunger with my left hand.

 

After filling the syringe with food, I would wipe the tip with a paper towel (as it was a bit messy) before inserting it into the tube extension attached to the button. If I went to a party or dinner with friends, I was shy about feeding myself; my wife would help me or I’d go to a private place to do it. Dealing with the paper towels, wiping the tip, and getting all the food out of the container was a process. I did it, but I avoided a lot of public outings.

 

On top of the discomfort I sometimes felt, my wife refused to have dinner in a restaurant with me because she felt bad she could eat and I couldn’t. Eating in restaurants, especially for dinner, is such a social occasion. As a result I often felt isolated, and was especially sad that my wife wouldn’t eat out with me.

 

New Routines

 

About seven years ago, I lost the use of my left arm (shout out to all the lefties!) due to radiation nerve damage. But my left hand and my left shoulder still worked, so I was able to continue to pull back on the plunger to fill the syringe and to push the plunger to feed myself.

 

Fast forward to December 2014. My hand continued to lose function until I could no longer hold the plunger and/or pull back on it. I was separated from my wife at that time, so she wasn’t an option to help me. I had to figure out a way to do this myself.

 

I still have one strong arm and hand, on my right side. After a little practice, I was able to pull back on the plunger with my right hand while also holding the syringe itself. That’s right—I’m a rightie now!

 

I also had an inspiration to dip the syringe in the cup of water I always used. Swishing the syringe in the water removes the excess blended food, and then it’s ready to bolus through the tube extension. No fuss, no muss—and no paper towels! Now eating with one hand is no problem. I have just enough ability in my left hand to sort of hold the extension tube steady while I plunge with my right hand.

 

Restaurant Dining

 

Shift to a few years ago, when Brian Liebenow visited Honolulu with his lovely family: Betsy, his wife, and Grace, his daughter. We met up with them a couple of times in a restaurant. Brian travels with a Vitamix and takes it with him to every restaurant. He refuses to be forced to eat canned formulas or to prevent his family from eating normally. He simply orders whatever he wants off the menu and requests the waiter blend it in his Vitamix. Voilà! Instant meal fit for a tubie!

 

I saw this with my own eyes. Brian also has the use of only one arm and uses a special syringe holder that is secured to the table top that lets him do bolus feeding by himself. Brian, I love your commitment to yourself and your family. Check out Brian’s funny blog: travelingtubie.blogspot.com.

 

When I was eating by mouth, my wife and I were big-time foodies. Good food was our religion. I miss it. Now that I can do one-handed feedings, I decided to try some restaurants around town. All I needed was my extension tube and one syringe. I figured any restaurant worth its weight in salt would have a high-powered blender.

 

First up was a Vietnamese restaurant named the best in Honolulu. I ordered a beer and a pho dish. I explained that I needed the meal blended to the consistency of a creamy soup with no food chunks. They graciously said no problem. They served my wife and me at the same time so we were able to “eat” our meal together.

 

Look ma, I’m eating in a restaurant again! There’s music playing and people talking and we made friends with our neighbors, who were visiting. This was fun! It brought pizzazz back to eating. It almost feels normal.


Next up we tried California Pizza Kitchen, which used to be my favorite restaurant. I ordered a glass of red wine. We split a salad. Then we split a pizza. And then we split a chocolate soufflé! The cool thing was I got to see what the dishes looked like as my wife ate her half.

 

I’ve since been to dozens of restaurants without a problem, from ice cream places to gourmet restaurants. I call in advance and confirm that the restaurant has a high-powered blender and they are willing to blend the meal for me, after explaining that I’m tube fed. I order what I want off the menu, knowing the high-powered blender will pulverize anything. I tell them it’s okay to add water while blending to get the blended meal to the consistency of pea soup. I also request that the blended meal be put in a tall, wide glass, which is the easiest way to get it into my bolus syringe. It seems restaurant staffs are more than willing to puree the meals so they’ll go through the tube. I’m very specific about there being no chunks of food.

I can’t wait for the next meal out. I have a whole city of restaurants to try, and repeats on my favorites. It’s good to be alive! Bon appétit!

 

LifelineLetter, May/June 2016
Updated 8/16/16

more Calendar

2/6/2017 » 2/10/2017
Feeding Tube Awareness Week

2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week

5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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