Feeding Tubes Don’t Have to be Scary

We have many patients who need a feeding tube either temporarily or long-term. One of the biggest hurdles we often face with our patients when first discussing the idea of a feeding tube is the fear of the unknown… Fear of how it will look, what others will think, that they won’t be able to eat anymore, etc. This week is Feeding Tube Awareness Week, so I wanted to take this opportunity to discuss a few very basic feeding tube facts.

1. They do not make people bed-bound.

Many people think of feeding tubes and picture someone in bed with an IV pole and tubes everywhere, when in fact for most people (who have a standard PEG tube), it’s just a small button on the stomach. It is opened up when it’s time to pour things in but is otherwise hidden under clothing. It doesn’t limit mobility or the ability to leave the home and do things. Many people go to school and work every day and live their whole lives with them.

2. They do not mean the person cannot eat.

Someone may be unable to eat and swallow certain textures, but there may be some textures that ARE still safe to eat by mouth while just supplementing with the tube. Some people even just use their feeding tubes for extra water for hydration or for medications that are difficult to swallow while getting most of their nutrition orally still. It is not one or the other. Feeding tubes and oral intake mix and match quite well actually.

3. Having one does not mean the person always has to use it.

Some people use feeding tubes temporarily (e.g., while learning to swallow again after a stroke in hopes to one day remove it), and some need them permanently (e.g., progressive conditions such as ALS). Many of our MDA clinic patients with ALS actually get feeding tubes long before they even need to use them just to have them in place for when the time comes. It’s easier to withstand the placement surgery while the diaphragm muscles are strong rather than waiting until they’re weaker later in the disease course with progressive conditions. Our lead MDA neurologist is a strong advocate for getting a feeding tube based on the timing of the onset of diaphragm weakness rather than the onset of difficulty swallowing, so we have many patients who have a feeding tube for 6 months to a year (or more!) before they ever even need to use it.

4. They actually IMPROVE swallowing a lot of times.

One concern that often comes up from our patients and/or their loved ones is that if they start using a feeding tube it may make them less likely to be able to eat again if they become dependent on it. We may be having the conversation because their swallowing muscles are weak and there aren’t many textures they can eat so they aren’t getting enough calories. It may be that they have trouble swallowing liquids and are dehydrated. Or because eating is so difficult and fatiguing that they wear out quickly and aren’t getting enough in at each meal to maintain their weight. Whatever the situation is, one commonality is that most of our patients who are considering a feeding tube are weak and malnourished from whatever the circumstances may be…. So often, what we find is that when our patients get feeding tubes, they usually start to feel BETTER right away! Once they are nourished and hydrated, that can actually improve their swallowing! Our muscles work best when our bodies are well cared for. Someone recovering from a stroke is much more likely to be able to participate in their swallowing exercises if they’re well nourished and hydrated than if they’re weak and fatigued from not getting enough calories or water.

5. There are many different types, but the goal is the same- to obtain nutrition by bypassing the body parts that aren’t working well.

There are several types of feeding tubes which are selected based on individual needs. One simple type can be threaded through the nose all the way down to the stomach. This type is used when the person probably won’t need the tube for very long, as it can be removed without any trace of it ever being there and does not require any incisions. It’s used as a temporary solution in the hospital until they are either able to get their nutrition orally again or until a more permanent feeding tube is placed (which would require surgery). Then there are several surgically placed options that connect either directly to the stomach, for those who have difficulty swallowing and need to bypass the pharynx and esophagus, or in some cases even directly to the intestines in order to bypass the stomach altogether. Many people simply pour formula, water, etc. into their tube 3-4 times a day like they would a regular meal. Others are on continuous overnight feedings where the feeding is set to slowly drip in overnight while they sleep. There are many individual factors that are considered when the physician selects a specific feeding tube. But the end game is the same- to obtain critical nutrition and hydration despite one weak link in the chain.

Help us raise awareness and break the stigma.

The stigma and fear associated with feeding tubes is something we face frequently with our patients and are always trying to help explain better to ease their minds. Feeding tubes are simply a great way to supplement nutrition in certain situations by bypassing the swallowing or digestive structures for textures that may be difficult. There are most certainly difficulties associated with the process (such as the procedure itself and healing process and missing the social aspect of eating or the pleasure of food). But for many people, the pros easily outweigh the cons. Most of our patients actually feel much BETTER when they get them.

Help us raise awareness of feeding tubes this week by sharing.