PEG Tubes and Swallowing Problems

Picture of Julita Mercado with Great GranddaughterBy Esmeralda Mercado

(The information shared in this blog involves one family’s experience. It is not intended to suggest that the incidents mentioned here will be commonplace for anyone with a PEG tube, nor is it intended to supersede your medical professional’s advice.)

My Mom has a PEG tube. She got it four years ago after a major stroke. Mom’s stroke left her speech slurred and her left side weak. The worst part was the damage to the nerves and muscles she uses for swallowing. Not only is there difficulty gulping down foods or liquids, there is also the danger of aspiration, which is when food or liquid is breathed into the lungs, creating a risk for choking or infection. To help Mom, a PEG tube was inserted into her abdomen.

What is a PEG tube?
“PEG” stands for Percutaneous Endoscopic Gastrostomy. It is a thin, flexible tube through which people can receive nourishment directly into the stomach. For those with ongoing swallowing problems, it is an alternative to feeding through the mouth.

A PEG tube has two ends. One end sits on the outside of the body; the opposite end leads into the stomach. The outside end has a set of valves. One valve is for feedings; another is for medications. A third valve is used for inflating a balloon, which is at the other end of the tube. The balloon keeps the tube from getting pulled out. A plastic disc or bumper is sometimes used on the outside to keep the tube from sliding too far into the stomach.

Challenges of Having a PEG Tube
Clearly, having a PEG tube was a lifesaver for my Mom and we wouldn’t have changed the decision to have it. It was, however, a big blow to my Mom and our family. Emotionally, it was challenging for her to not be able to enjoy favorite dishes or comfort foods. Also, holidays and other celebrations centered on food feasts offered a special challenge. At those times, and whenever she’s able to, we welcome her to enjoy itty-bitty pieces of food through the mouth. It is a good thing that eating is not one of my Mom’s love languages.

Physically, I’m not sure if Mom’s body has fully acclimated to a tube. I tend to wonder because after four years, she has had about 15 PEG tube replacements. Often, they were replaced because of pain she was experiencing in the region where the PEG was located. The tube wasn’t always the sole reason for the discomfort, but more times than not, it was the main contributor to the pain. Recently, for example, the balloon turned out to be underinflated so the tube kept sliding in and out of her stomach, causing agitation. In this case, the balloon was re-inflated; the tube did not require replacement. The tube is nice and snug now. Another issue created by the tube was leakage. Often, body fluids leaked out to her skin, causing a burning sensation and lots of pain. The doctors seemed to differ on how to treat it. One specialist said to put Nystop prescription powder to keep the tube from sliding. Another doctor said to not use the powder; instead, apply Desitin® or A&D Ointment® to heal the skin. Unfortunately, this method lubricates the tube and promotes sliding. As of this writing, the doctors and we are still trying to figure out what’s best.

Light at the End of the Tunnel
When Mom first got a PEG tube, the doctor said she would probably always have it, but there was also a possibility that it would not be forever. It’s been a slow journey; there has been some set-backs, but also many hopeful moments. For my family, it’s not so much that we are waiting for light at the end of the tunnel, as much as we are seeing people in a new light. Seeing my Mom’s courage, faith, and ability to stay tenderhearted, I am rediscovering what an amazing gift I have in her. I always knew she was “Superwoman” from the things she used to do. Since she has been in a wheelchair and tube-dependent, I am realizing that she is much more of a hero now than she has ever been.

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