In one of my previous posts, I had already mentioned that a feeding tube does not automatically mean that you can no longer take in any food orally. Of course, it always depends on the individual situation. Like many other people, I am also a part-time oral eater. This means that I can take in small amounts of specially prepared food by mouth. But that was not always the case. Today I would like to tell you about the time when my nutrition was provided exclusively by the PEG tube.
No longer having to eat
After I received my first feeding tube, I was in paradise, so to speak. The tube ensured that I finally consumed enough calories. This meant that I no longer had to eat. That was a huge relief for me and took an incredible amount of pressure off me. But since we live in a world in which oral food intake is of great importance, my parents naturally felt sorry for me (more on that later). Consequently, from then on I was allowed to snack on anything I wanted orally. Starting with expensive chocolate, through to honeydew melon and shrimp cocktail.
Exhausting battle
This went on for quite a while. However, it also happened from time to time that I choked on this little bit of food. Logically. Because I had gotten the PEG not without reason. So if I had choked again, it meant at least a half-hour “fight” for me. Because what I had literally gotten in the wrong throat, I had to cough out again. Unfortunately, I had a lot of practice in this and also my very special technique. Nevertheless, all this was not only unpleasant, but also quite exhausting and not nice to watch. So, in such a case, I always retreated to my room.
One evening…
I was having dinner with my father. The rest of the family was out. And I nibbled on a slice of cheese. This caused me to choke, which led to the scenario just described. When I returned to the kitchen from my room feeling rather defeated, my father joked, “Well, you’re not getting any more from me.” Although it was absolutely clear to me that he was making a joke, it was also clear to me that he was actually right. So I decided at that moment that I would no longer eat orally. Thanks to the feeding tube, I didn’t need to. In my eyes, the constant risk and the concentration required when eating were no longer worth the little enjoyment.
You don’t miss that much
Since I had made this decision for myself and without external pressure, I was able to live with it quite well. After all, I had my reasons. My family felt sorry for me. Because in their eyes, I was missing out on an incredible amount by just sitting at the table. But that wasn’t true. Of course, eating has many facets. In addition to taste, mouthfeel and smell, there are also social aspects to eating together. But I didn’t have to do without that. I just sat down at the table with my family for meals and let the tube feedings run through during that time. So I was still there and could also take part in the conversations. Even better than before. Because you don’t talk with your mouth full. Especially not if you have a swallowing disorder. Due to the fact that my tube feeding always passes through very quickly (this article provides more information), I, like everyone else at the table, was full after eating. I didn’t miss the feeling in my mouth at all because chewing and swallowing had been exhausting for me. I still had the smells though. And the lack of taste was something I was willing to do without. So I stuck to it and really didn’t snack anymore.
Habits and conscious enjoyment
After some initial uncertainty, those around me also got used to it very quickly. While at home there was still a plate at my place in case I wanted to snack again, it was soon no longer set. That was a great help for me. Of course, there were days when it was difficult for me to do without. The missing plate was then a good mental support to stay strong. After all, I had my reasons. I had also explained these to my family and friends. So they were all understanding and supportive, even if I stayed away from food on some days. Because, of course, enjoying food (not just shoveling in something hopefully nutritious just to be full) is something that is sometimes missing. But to learn that, I first had to give it up completely. Years later, I set out to rediscover the joy and pleasure of conscious eating. But that’s another story from my life with PEG.
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