“PEG Or MIC-KEY “ Chapter 64

I was thinking of what to write this week when I realized I have written about using my feeding tube a little, but not enough to answer questions or address the concern PALS or others requiring feeding support might have.

A percutaneous endoscopic gastrostomy (PEG) is a surgery to place a feeding tube. Feeding tubes, or PEG tubes, allow you to receive nutrition through your stomach. You may need a PEG tube if you have difficulty swallowing and/or can't get all the nutrition you need by mouth.

When I first got my PEG, I was having trouble eating without choking on my food and it was taking 30+ minutes to complete a meal. I had already lost 40 pounds and could only eat soft foods. The doctors told me to eat using a chin tuck method meant to help align my esophagus better to avoid choking. It worked ok, but not enough to get the right level of nutrients and calories. We then discussed a PEG with the pros and cons.

The "pro" column included supplementing meals to get the calories I needed. I could avoid choking and the pneumonia that could develop if liquid or food particles enter the lungs and I'm not able to cough it out.  I could also still enjoy some foods. Once placed in it is very easy to use and durable. Easy to replace with topical pain killers while awake.

Some of the cons; you can’t taste anything going directly into your stomach. PEGs are bulky and can get caught on clothing. They will leak stomach contents if the clamp opens. People will stare at you when feeding but won’t ask questions. You have to have surgery to get the first one.

I currently use a MIC-KEY. What is the difference between a PEG tube and a MIC-key button?

A PEG tube commonly refers to all G/GJ-tubes regardless of placement technique. PEG tubes have long tubing and are often the device used for initial placement. A MIC-KEY, a trademarked name, commonly refers to lower profile gastric tubes (or “buttons") that sit at the level of the skin.

This is the second MIC-KEY I’ve had.  The MIC-KEY comes in a variety of sizes from 12F - 24F. It’s important to know this because if you get a larger PEG, you may not be able to get a MIC-KEY.

Some of the pros of this option are the smooth look against the body. The feeding tube locks securely in place avoiding leaks. It can also be easily replaced in minutes.

Some of the cons are they are not well known by nurses, and while in the hospital we had to orient and train them. Internal locking clips can also break easily, which can cause leaking.

When I got my first feeding tube, I had a PEG. To be honest, I waited too long and was hard-headed about the idea. I guess I was in denial. At work, a group of us would eat together. As I got slower, I was always the last to finish. I was taking half of my lunch back to my office to finish . Once I got the PEG, I went to liquid lunches and stayed in my office most days. I was not embarrassed to use it in front of anyone, I just felt it was easier to eat in my office instead of sit and watch others eat.

Once I got over myself, I realized I was alienating myself from the people who cared for me - the people I wanted to be around - so I would quickly PEG and join them.

I also realized before getting the PEG that I was starving my body and was losing weight fast. I needed a way to stop the loss, and eating more ice cream wasn’t working. Once I got the PEG, I was able to get the calories needed to stop the loss. Before ALS, I was 185. I lost a total of 50 pounds over eight months, weighing 135 at my lowest in January 2023. Like I said in a previous post, I’ve gained 25 pounds back using the feeding tube 100% of the time since December 2022.

One other issue I had was finding the right food. There are many options available, and you can always blend your own which is not a bad option because you decide what you eat. However, you will have to figure out calories, vitamins etc. You can select one of the many liquid meal options; Boost, Jeviy, Kate Farms, Liquid Hope and others. Since you don’t taste your food you don’t have to worry about that. However, you do have to worry about calories, vitamins/minerals and ingredients. I started with Jevity because I didn’t know better and that’s what was offered by the dietitian. We changed the formula twice because I was still losing weight and it made my stomach upset. After some research, I realized I could not pronounce most of the ingredients in Jevity, so we switched to Kate Farms 1.5 with peptide and I am doing fine.

Because I can’t eat a lot at one time, I break up my meals into smaller portions every 2 1/2 hours. This was wearing my caregiver out, so now we use a pump at night. The pump is used during the hours I am sleeping so no one has to wake up to feed me. With this process, I am able to eat four bottles a day and drink 2 quarts of water.

Over the past year we have found the right solution for me. However, if you are going to be using a feeding tube for any reason, you need to do some planning. Knowing what type, size, and calories are needed, as well as available food sources are all key to your success and transition.

Love and blessings