You and your loved one’s medical care starts with you. Managing your care is more than managing a feeding tube routine. Explore the resources below that address independent living and quality of life.

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Having a tube-fed loved one can sometimes feel like it consumes all of your time and routine. While there are some additional considerations when your loved one has a tube, in most cases, the entire family can continue to live a rich, full, and active life! Tube feeding on the go can take some practice, but there are great options and tricks to make it easier.

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If you need to warm feeds, consider bringing an insulated water bottle with hot water along to set the formula or blend in. Measure the feed ahead of time, and then allow it to warm in the water bottle or a separate bowl. A small cooler is a great way to bring multiple feeds with you and keep them at a safe temperature. You can also use a pump backpack for feeds on the go or hang the pump with a carabiner on a stroller, wheelchair, back of a car seat headrest, etc., or try out the Free Arm for a great on-the-go option to tube feed anywhere!

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The biggest things to keep in mind when being out and about with your tube-fed loved one are:​

• keep the formula/blend appropriately hot/cold

• bring sufficient formula/blend to cover any feeds while you’re out

• make sure your pump is charged and bring a back-up option like a syringe

• bring a backup kit! One of the scariest parts about being away from home is the potential for a tube to come out! Be prepared with a back-up tube and kit to ensure you can replace the tube no matter where you are

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Diet & Exercise

While in some cases individuals with feeding tubes have digestive issues, the vast majority have a functioning digestive system! The only difference is their digestion is starting in the stomach or small intestine, while for oral individuals, digestion starts in the mouth. Some individuals may require specific formulas due to a medical condition or limitation, but for most, standard enteral formulas or blended diets are both adequate. And if your loved one doesn’t have an actual oral restriction where they are not allowed to have anything by mouth, have them join the rest of the family in meals as much as possible, even offering some of the meal if they’d like to participate in any way, do so! Eating is so much more than nutrition - it’s social, emotional, cultural, and more. Allow your loved one to be a part of that experience, even if it’s just being at the table with everyone while the tube feed runs or taking a lick of a piece of the meal.

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Yes, there are cases where this isn’t true, but not every individual with a short bowel is tube-fed, nor is every person with metabolic disorders, heart conditions, kidney disease, liver disease, etc. This is not an argument against tube-feeding, but often medical professionals tend to forget that eating is more than just calories, vitamins, and minerals. You may find a formula that works best for your family, but in most cases, you can also share family foods with your tube-fed family member, as well, through blended feeds. There are also commercial blended options available if you want to provide a tube-feed option that more closely mimics an oral diet.

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Much like nutrition, needs don’t typically change just because an individual is tube-fed, the same is true for exercise and movement. While other medical considerations or concerns may impact your loved one’s physical abilities, the tube itself isn’t usually a big limitation. Walks, hikes, bike rides, and the like are all great options. Contact sports are sometimes discouraged, as the risk of the tube being bumped or dislodged is generally higher. However, this is a conversation worth having with your provider and know there are also great options out there like g-tube belts, that may make some of these activities less risky. Even swimming is an option! Just keep in mind that NG/J tubes need to be closed and clamped, while G and J tubes should typically be covered with protective tape so water doesn’t get it. The stoma also needs to be fully healed, which means no submerging the site for about 2 months. Finally, while oceans, saltwater ponds, and chlorinated pools are all considered safe, avoid lakes and streams due to concerns about pathogens and bacteria.