Emotional Tools for Adapting to Tube Feeding

A change in your health care does not just mean learning new skills and making new routines. Changes from a sudden disability to surgery to needing a new medical device can disrupt your life. These changes may affect your emotional well-being.

Studies have shown that a positive mindset and an attitude of strength can improve health and quality of life, even when facing problems.^1,2 Positivity is a skill that can be built with practice. It is only one of the many coping tools you can find to help make living with a feeding tube easier to deal with on an emotional level. Below are some other skills to help improve your emotional well-being.

Realize you are not alone

Adjusting to life with a feeding tube, including all the changes you may need to make to your regular schedule and activities, is difficult at first for most people. It helps to remember that you are not alone.

• Kelly B., a patient with a MIC-KEY* GJ low-profile feeding tube, told us when she first got her tube she didn’t know anyone else who was on a feeding tube, or anyone who had a gastrointestinal condition like her.
  • “I felt like, ‘No one else goes through this; no one else knows what I’m going through,’” she said. 
  • Along her journey, Kelly found The Oley Foundation, which offers resources and support for people with feeding tubes. In fact, she now helps Oley to run a support group for teens and young adults with feeding tubes.
• You can also connect with other tube-fed people through our Tubefed.com Facebook group.

Learn, Learn, Learn

Many patients in a study about reactions to life-changing illness said having information about their condition felt important and comforting. 

• Several also said that having to ask healthcare professionals for details many times or trying to search for information caused negative feelings.³ 
• The sites listed above offer a place to start learning if you do not know how to begin.
• Knowledge is powerful. You can make better decisions about your treatment.

Give yourself time and space to heal

If you are just beginning your tube feeding journey, you may still be healing, both from surgery and from the health condition that caused your doctor to recommend a feeding tube.

• Give yourself a break! You would not expect a sports star to go back on the field a day after knee surgery so why expect yourself to keep doing everything you used to do without some changes.
• Be aware of your mental health. At first, you might feel fear and sadness, even anger or hopelessness. These can ease with time and practice adjusting to the changes.
• At first, Kelly B. said, taking care of her tube at home seemed terrifying.
  • “It seemed like if I just do one wrong move, I’m just going to mess everything up and have to have surgery again, or something,” she said. 
  • “I’ve now realized that taking care of the tube and using it every day is not as scary as you may think.”
    

Seek out specialists

Sometimes you may not be able to handle emotions all by yourself. It is okay to talk to someone who is an expert in those feelings. A therapist or counselor, maybe. A support group leader, a mentor, or a minister. Even someone who has had a feeding tube for a while and can help reassure you.

The healthcare team that showed you how to use your feeding tube are experts with feeding tubes, but they may not be experts in mental health or the concerns of people adjusting to a feeding tube. Perhaps your body image has changed in ways you do not like, or you are struggling with sadness, mood swings, and lack of enjoyment in life. 

Never feel afraid to ask for help.

Cut down on complexity

Ask your healthcare team how you can make your feeding regimen as easy as possible.

• Can you change your feeding schedule so it is more convenient?
• Could you get a lightweight and portable pump so you can feed wherever you go?
• Other tube-fed people may also have recommendations on making life with a feeding tube less frustrating.

Practice!

It is normal to feel frustrated when trying to make changes. Just like no one gets right on a bicycle and knows how to ride, no one who is new to tube feeding can do things perfectly on the first try. 

• The more you practice measuring, securing attachments, flushing tubes, and taking care of your tube and stoma, the better you get at it. 
• Practice leads to being able to do things on your own. This can feel good when able to take care of your body and the feedings. Over time, you will want to get back to the many things you enjoy.

1. Taherkani Z, Hossein Kaven M, Mani A, Ghahremani L & Khademi K. The effect of positive thinking on resilience and life satisfaction of older adults: a randomized controlled trial. Sci Rep 2023;13:3478. ↩︎
2. Duncan AR, Jaini PA & Hellman CM. Positive psychology and hope as lifestyle medicine modalities in the therapeutic encounter: a narrative review. Am J Lifestyle Med 2020;15(1). ↩︎
3. Benkel I, Ljungqvist E, Arnby M & Molander U. “Not Thinking that This Means the End When You Are Seriously Ill but Doing Something Positive About It”—A Qualitative Study of Living with a Life-Changing Disease. Diseases 2019;7(3):53. ↩︎