Tips for Tubies: Tubie Love & Acceptance

New to tubie life? Have a friend, family member, or loved one of any kind who is getting/has a tube? Or maybe you aren’t new to life with feeding tubes, but you want to see what some of the other tubies have to say?

No matter what role tubes play in your life, I can almost guarantee that  you will learn something from my “Tips for Tubies” series. This section of the list is all about self image and acceptance of both your changing body and your new tube(s).

1. It can be hard adjusting to tube feeding and not feeling in control of your own body, but you should never feel ashamed of the tubes or the changes they can bring to your body. These tubes keep us alive every day. It may take time to come to accepting this addition to your body, but remember that health comes first!

2. You get a feeding tube to restore your body and energy, they are meant to give you your life back, not take it away. You can do almost anything with a tube that you could do without one! Don’t give up on your dreams or your goals.

3. Trying to eat while you’re a tubie is not anything to be ashamed of; many people have a couple “safe foods” or still drink liquids! If you can tolerate oral intake and your doctor is okay with it, attempting to keep your system “awake” even with an occasional, tiny snack can be good and in no way invalidates your need for a tube.

4. Try to stay social! Being so sick and having surgery like this often leaves us feeling exhausted and sometimes unmotivated. Getting dressed and going out takes a ton of energy, but it’s too easy to become isolated! Friends will only take rejection so many times before they stop asking to hang out; even just suggesting a movie night or spa night at home is a good option to see friends but not use as much energy.

5. Feeling down in the dumps? Try creating a vision board! Think of all of your goals and dreams, even the totally unrealistic ones (being a mermaid, traveling the world in 30 days, learning to fly, etc.), and cut out pictures and words and quotes in bright, bold photos and lettering and then put it one a board or a collage and hang it in your room to help encourage happy thoughts and positive thinking 🙂

6. I don’t think anyone would say that life with feeding tubes is easy, there are many challenges that come along with it, both physical and mental; although these illnesses often leave us feeling isolated and lost, no one has to do it alone.  There is such a strong online support community, and though it is not the same as having real-life, in person friends, the support you get and friendships you can make with people going through the same things that you are is life changing when you’re going through something that so few people understand.

Tips for Tubies: A Tubie’s Guide To Success Vol. 1


  1. The doctors work for YOU. Not the other way around. If a doctor (or a nurse, tech, or anyone else in the medical system) treats you with any less respect or dignity than you deserve, consider finding a new specialist.
  2. No question is a bad question. There are awkward questions and there can be a boatload of questions, but all of them are important. Ask until you’re satisfied, even if the doctor is acting rushed or distracted. Your health and confidence is more important than anything else.
  3. Some surgeons aren’t big talkers – they like to get the job done; make a list of questions and concerns and make sure to ask them the first time you see them pre-op/post-op or during your follow ups, it could be the only time you see them!
  4. Recovery can be even more challenging than surgery itself. Have people who will be around to help you or at least set up some people to come visit and check on you each day. Before surgery, set up a place by your bed or couch where you can keep some essential items so you won’t have to get up and down every time you need something.
  5. Don’t push yourself! There are no “shoulds” with chronic illnesses or tube feeding. If recovery is taking longer than planned, take some time off from school or work if you are able to! Learn that it is okay to say no when your friends want to go out to eat or get drinks late on a Friday night, if you feel cruddy or just don’t want to be around food, it’s okay to stay in or suggest a different plan. No guilt.
  6. Learn to advocate for yourself. It can be hard to really get doctors to understand what you truly feel and then to get what you need to be comfortable. Be persistent and thorough in explaining symptoms and how it affects your life. If you aren’t good at being forward, take a parent, spouse, relative, or friend who can help make sure everything gets covered.


These are just a few of the major tips for getting started with “tube life,” but they’re applicable throughout the journey with feeding tubes and really with any chronic illness. Learning to manage your case, advocate for yourself, and stay on top of appointments/doctors, questions, and treatments both past and present can be a big task, but staying organized and figuring out early on what methods work best for you to manage it all is really beneficial in the long run.

Keep your eyes out for more tips, the next round will be more tubie-specific regarding tube care and what to look out for vs what not to get freaked out over! 🙂

Thanks for reading and  I hope it was helpful! If you have questions or suggestions don’t hesitate to comment or message me!