Dysphagia's Top Ten List

Interesting Facts You Do Not Want to Have to Learn for Yourself

Every illness brings with it unique side effects, stories or surprises. The condition of having difficulty with swallowing, or the inability to swallow, is known as "dysphagia." It comes from two Greek words, which when interpreted mean, "Bummer, Dude!" No, actually they mean "difficulty" and "to eat.” To move food from the mouth to the stomach requires some fifty pairs of muscles and who knows how many nerves. A few bones even get in on the act. (Who knew I had a hyoid bone?) So, swallowing is no simple task. Next time you take a drink of water, just know that there's a whole lot more going on than you ever imagined.

Today I'm providing a brief education on the uniqueness of the "unswallowed life" and the parasite attached to my stomach also known as a feeding tube. For those who are new to my story suffice it to say that I had my last meal on November 18, 2008. I was unconscious for a few days after that due to a mysterious illness that about took my life. Since then, I've not swallowed anything, even my own saliva. I keep exploring what the medical world has to offer and thousands of prayers have been offered on my behalf, but to date--no answers, no progress. So, today I write this as part of my own "therapy." Finding some humor--or at least attempts at it--help keep me positive or at least sane.

However, I do need to issue a CRASSNESS WARNING: If you don't like "body talk" you do not want to read this. Don't complain. You've been warned.

And so I present the Top Ten Surprises of Having Dysphagia:

Surprise #10) A dilemma: if you can't swallow and are travelling on an airplane, it is very difficult to clear your ears. Frustrating, but not a major issue.

Surprise #9) You continue to generate a lot of saliva throughout the night. It's got to go somewhere. For me, I always have my spit rags or paper towel handy 24/7. My night consists of sleep/spit/sleep/spit/sleep/spit. Sometimes I sleep so soundly for a while that my need to spit doesn't awaken me, and I later find myself in a puddle of drool. Joanna changes the sheets a lot at our house.

Surprise #8) When you experiment with real food in your feeding tube and don't get it runny enough or all the chunks out, it's not a good scene. Really the only thing to do is force it through with a syringe which feels like a tiny hand grenade going off in your stomach. A strainer is a great invention and a really handy piece of equipment to have around to avoid such excitement…but it only helps if you use it prior to putting food in your tube.

Surprise #7) Meanwhile, if you forget to turn the valve that opens your feeding tube and try to force food down, you can blow the safety valve cap off and spray food all across the room. It's pretty exciting, but can make quite a mess on the chair and window behind you…I speak from experience.

Surprise #6) One very strange thing: If stuff (reflux and vomit) can come up my esophagus, why can't good food or saliva go down it?! I am breaking the classic rule of "what goes up, must come down."

Surprise #5) Being unable to swallow, I have developed the skill of storing saliva in my mouth and throat. Aren't you impressed? However, since my soft palate doesn't close all the way there is an open channel between my mouth and my nasal passages. The result is that when I bend over to try to pick something up off the floor that I've dropped--an all too frequent occurrence--the reservoir of saliva (by virtue of gravity) comes pouring out the nose. Can you spit through your nose? No? I guess I really can't either. But I can nose drool with the best of them!

Surprise #4) On the subject of the nose…Nasal Regurgitation--who knew there was such a thing? Even though I have to spit it right out, I do chew soft food once a day or so to enjoy the taste and use my jaw muscles. However, due to the failure of my soft palate to fully close, I can blow mashed potatoes out my nose on demand. Demonstrations by appointment only.

Surprise #3) Feeding tube formula. The ingredients are: water, corn syrup, canola oil and a whole paragraph of four syllable words with way too many "ides" and "ates" such as "alpha tocopheryl gluconate" and "pyridoxine hydrochloride." Mmm, sounds appetizing, doesn't it? Dinner's on me tonight. I've got plenty to share! One can or two? I impose a strict three can limit. Now I know some well-trained and well-meaning medical person will tell me that these things are all fine and good for my body, but when I look at a label I'm usually looking for one syllable words like "rice" or "beef." And besides, after an entire year of living on formula alone without gaining any weight back, I'm moving on to my own recipes.

Surprise #2) When you are feeding on food you are not tasting, it definitely changes the way you cook. Today I had a combination of runny oatmeal, nuts, banana, honey and cheerios all pulverized beyond recognition in a high powered blender…and then thinned out with tomato juice. Ever had runny banana tomato oatmeal? It's great, as long as you don't have to drink it.

And finally, the Number One Surprise of Dysphasia is a happy thing: If you have a feeding tube you should never have to throw up. This occurred to me the second time I got sick from my formula. (The first time I just vomited like a normal person.) But a few weeks later, in the middle of the night, when once again my formula didn't agree with me and I had that "I'm going to lose it any minute" feeling, it dawned on me that I could just syringe it out via the tube. It went in via the tube, why not take it out via the tube? Ten minutes and ten syringes later (of the nastiest smelling stuff you ever want to encounter), I was feeling human again. This is the one aspect of a feeding tube I will actually miss. I'm living a vomit free lifestyle.

On a side note, when I did the "syringe vomit" method for the first time, we called a nurse just to make sure we weren't doing something we shouldn't do. She told us it was fine, but that I should put the fluid back into my stomach after I syringed it out. You've got to be kidding! First of all, the stuff was making me sick. It was coming out one way or the other, by mouth or by tube, why would I put it back in for a second try? Second, it had sat in my stomach for five hours already and hadn't gone anywhere. Obviously, my body didn't want it! Third, after five hours of high temperatures in my stomach, the formula had curdled and smelled like the garbage you forgot to take out before you left on summer vacation for two weeks. There was no way I was putting it back.

These are the kinds of things going through my head as my kind wife was on the phone with the nurse. Suffice it to say, it's really a good thing that Joanna was intercepting my message. Syringe of stench in hand, I said with emotion, "Put it back in?! Put it back in?! No way! Tell her to drink her own vomit! Tell her to stick a straw in the toilet and suck her vomit back out!" (True story.) Wisely, my wife ignored my rant and kindly thanked the nurse for her advice. Joanna hung up. I flushed. Problem solved. I slept fine.

My apologies to anyone looking for spiritual encouragement today. Hopefully I'll have something of substance to share with you Monday. Meanwhile, thanks for continuing this journey with me.

Until We Eat Again,
John