The ALS Association

ALS Ice Bucket Challenge Progress

Now or Later? Decisions Involving Feeding Tubes Require a Proactive Approach

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“Living life to its fullest means staying active,” says 45-year-old Brian Epp of Battle Ground, Wash., who was diagnosed with ALS in 2010. Less than one year later, while he could still chew and swallow well enough to enjoy the flavors and textures of his food, Epp decided to get a feeding tube, because, as he describes it, “I like to push myself and see what I can still manage to do.” And as far as Epp is concerned, ALS is no excuse for not pushing. Even his wheelchair does not stop Epp from paragliding or enjoying his snowmobile.

What Is a Feeding Tube?
Although there are different types of feeding tubes, people with ALS typically use what is commonly called a PEG. The tube itself is made from a flexible material, usually polyurethane or silicone, and is about a quarter of an inch in diameter. PEG is an abbreviation for the procedure used to place the device: - (Percutaneous (through the skin) Endoscopic (into the GI tract) Gastrostomy (hole in the stomach).

Three years ago, Epp got his first feeding tube with a long hose that “came out of my belly,” he describes. “I wasn’t really excited about having something hanging out of my stomach that might limit my activities,” so within six months he was able to switch to a tube that extends only a half an inch from the surface of his stomach, making it easier for him to move around. As far as range of movement and physical activity with a feeding tube goes, Epp says it’s, “no problem,” and he can “still swim or go in a hot tub.”

High-powered Vegetables
Because Epp can still safely chew and swallow, he can continue to enjoy the meals he likes. However, he uses his feeding tube for “increased water intake and a high-powered vegetable juice that would otherwise taste terrible,” he says. The good news about the feeding tube is, “I can bypass my taste buds and the bad flavor of the vegetable juice. I really use the tube to my advantage.”

Epp admits to being “blessed to have lots of friends that are as adventurous as I am, so whatever I’m willing to do, I can usually find people to help me accomplish it,” says the man who has racked up more than 1,500 miles using his wheelchair for long distance treks.

In September 2014, Epp traveled 170 miles from Battle Ground, Wash. to Bend, Ore., using only an electric wheelchair capable of traveling 15 miles on a single charge. Epp says, “I even went from Battle Ground, to Portland, Oregon using the city bus and ‘light rail’ to visit my friends at the Oregon/SW Wash Chapter of The ALS Association office in Portland!”

This inexhaustible desire to move has everything to do with his early decision “to get my feeding tube put in sooner rather than later.”

When Is the Right Time to Have a PEG Placed?
Most doctors recommend getting a PEG placed early, before you absolutely need one. Placing prior to a Forced Vital Capacity of no less than 50 percent is optimal. It is important to keep in mind that the sooner you have a PEG placed, the better your body will be able to recover from the procedure. Others signs it may be time to consider getting a feeding tube include:

  • Difficulty swallowing and chewing (food, liquids, medications, saliva)
  • Noticeable weight loss
  • Fatigue caused by eating
  • Mealtimes that last an hour or more
  • Choking or gagging becomes common at mealtime
  • Frequent respiratory infections

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