Coping with Dysphagia
Dysphagia means difficulty swallowing, and it has a variety of causes. If you have trouble swallowing that you’ve not had assessed by a medical professional, that is step one: call your doctor. Depending on the cause, the treatments are different. The cause of my dysphagia is IBM, and unfortunately, it’s pretty common, particularly among women with the disease. Having dysphagia for any reason increases the risk of aspiration pneumonia, which is quite serious, so getting it checked out is mandatory!
In our culture—and most cultures—eating together is a part of how we bond. We like to go out to eat with family and friends, cook for others, and eat their homemade meals. Having dysphagia really cuts into this bonding, as sputtering, choking, and throwing up into one’s napkin is quite common, not to mention uncouth and embarrassing.
Luckily, the first time I experienced severe dysphagia was at home. We had invited some friends over for a happy hour, and I grabbed a pineapple piece on a toothpick we’d made for snacks. I popped it in my mouth and chewed for what I thought was an adequate number of times, and then I tried to swallow it. All of a sudden, I felt as though I could not breathe. The pineapple piece was stuck in my throat. I don’t know what kept me calm as I set down my plate and went into the bathroom, where I slammed my stomach against the counter and coughed the pineapple up into the sink. I then went back to the party but was a bit less animated after that and didn’t try the pineapple again.
The very next time I had dysphagia was when I was out to dinner with my best friend. That time, I choked until I threw up my lunch. Since we were at a cloth-napkin-caliber establishment, I took the napkin to the restroom and threw it in the trash. Several tables of folks stared at me, and if I caught their eye, they quickly looked down. Fortunately, I did not know any of them and have not run into them since. It was very embarrassing.
I decided to see a doctor to have the situation assessed, and they sent me to a speech therapist for swallowing studies. They could not see what was happening exactly to cause the food not to go down, but they could see that it was stuck. They recommended speech therapy sessions. This was all prior to my IBM diagnosis, so no one was really thinking along those lines yet.
I went to those sessions and was told to “dry swallow,” to chew my food a lot more, and choose soft foods. It was hard to understand the choosing of the foods, since it seemed to me I choked on everything from water to steak. It was not the food that was the problem! They also suggested I swallow water both before and after taking a bite to get my throat wet before the food and use it afterward to wash the food down. I went to 3 of the sessions and then felt like they did not understand what I was dealing with, so I quit going. They suggested I see an Ear, Nose, and Throat doc, which I did.
The ENT folks put a camera down my throat but could not see any problems they could identify. They recommended a Gastroenterologist. My Gastro did an endoscopy to see if he could see the problem, but like all the other specialists, he said he could not see the cause. By this time, at least, we knew I had IBM, so we were thinking about the issue more broadly and taking it more seriously. Many other IBM patients had mentioned a surgery that could help with dysphagia, but my Gastro said I was not a candidate. He did “stretch” my esophagus to see if it would help, but unfortunately, I didn’t find any relief.
Instead, I ate until I choked, then pushed my plate away and threw the rest of the dinner in the trash. By doing that, I was losing weight, and I was already too thin. I had participated in a fitness contest the year before and had lost nearly 30 pounds, which I then failed to regain. When I went to the Gastro, he told me I could not get much below where I was, or we would talk feeding tube. So, I started eating a pint of ice cream every night after dinner. Don’t hate me for that! I had spent the previous 75 years wishing I could have ice cream once or twice a year as I fought to keep my weight down from high school on. It is a difficult adjustment to make.
To both gain weight and find something I would not choke on, I tried drinking protein drinks. Some of them were horrible, and others were worse. At last, I found one I could stand the taste of - Ensure High-Protein French Vanilla. So that was breakfast every day–one meal conquered! I started to carry airsick bags and paper napkins in my purse. I learned that if I ate slowly, chewed twice the number of times I was used to, and gave up the idea of eating food while it was hot, I could have fewer incidents. I also noticed that if I tried talking while eating, I had more incidents than ever. By giving that up, I became a less interesting and very quiet meal partner, but my friends understood, so we continued our habit of eating out together.
I also learned a few tips from my speech therapist at the IBM clinic. I had intuitively been tossing my head back when I felt food start to get stuck, as though I could toss it down my throat. But I was inadvertently making the path for the food less straight, actually worsening the episodes. If you have dysphagia, be sure to talk to your speech therapist about how to handle it.
Now, I always make sure I have a glass of water before I start every meal and refill during the meal at least once. I minimize talking. If I get something difficult to swallow, I chew it until the flavor is gone, then I spit it out and hide it in my paper napkin. I also had to quit taking large capsule medicines and supplements. When I started making protein shakes for breakfast, I would break them open and pour the supplements into the shake. I’ve also moved more to gummies, liquids, sublingual, and even supplements absorbed through the skin.
Slowly, over time, I got so I could avoid most episodes. Now, they occur mostly when I am trying to hurry or talking while I eat. I guess that is the best I can do for now. Staying aware and positive about continuing my social life as usual are my only real tools, so I make the most of them.
I have said this before, but adjusting to a new way of life is challenging emotionally. I have to give myself time to adapt and learn. We celebrate even the smallest victories along the way. I reach out to friends and family for encouragement and tell them my dilemmas when we are going somewhere together so they don’t get a surprise. They are usually still up for the challenge. Early on, I sought professional help because I found myself struggling with anxiety, depression, and emotional challenges. Now blogging serves much of that role. Thank you for opening and reading them.
I appreciate you!
“All we have to decide is what to do with the time that is given us.”
This blog post is based on personal experiences and is not meant to provide medical advice. Always consult your healthcare professional for personalized guidance on your health journey.
