No one expects to end up with a feeding tube, and your first experience can come with a large learning curve. We know the feeling, and want to help lower these barriers! Here is what we wish we knew going in:
Getting the tube placed is often the scariest part. Depending on the type of tube, you may or may not need surgery. Some types are inserted by a radiologist using an x-ray as a guide. Others are inserted during an endoscopy. Longer-term tubes are inserted directly into the stomach or intestine through abdominal surgery. Your abs will feel sore for a while, so take it easy. It’s important to set aside a few days after surgery for recovery, and ask someone to help you out at home until you’re back on your feet. And don’t be alarmed if you continue to feel some soreness or discomfort throughout your time with a tube; it is an unfortunate side-effect of this health-enhancing (and potentially life-saving) device. After a few months, however, the worst of the discomfort should pass.
Tubie tip: You will be sedated for surgical placement, but not necessarily for other types, or for replacement procedures. You can always ask for sedation if it would help you feel more comfortable!
Once your tube is placed, you typically stay in the hospital for a day or two to make sure you tolerate your feeds. This can take longer if you have any complications or food allergies.
Tubie tip: when receiving medications or flushes at the beginning, request that they go slowly or that you push them yourself. Your intestines won’t be used to fluid and it can make you feel sick until your intestines adjust. You can also ask that they start your feeds extremely slowly (like 10mL/hour) and then slowly titrate up once you know you tolerate the trickle feeds. Some bodies just need some time to get used to it, and doctors may not realize that going too fast can cause pain and nausea. On that note – anytime something feels wrong, speak up! Your doctors and nurses are there to help you, not make you feel miserable! But they won’t know to make a change unless you tell them something’s not right.
Once you have found a feed and process that your body tolerates, you can head home! Providers at the hospital and home care providers will help you learn how to administer feeds and care for your tube from home.
There are many different types and brands of feeds, so it’s ok if you don’t tolerate the first kind you try! You may want to research ahead of time to be familiar with brands and ingredients so that you don’t have to process it all while groggy or overwhelmed in the hospital. While there are many wonderful feed options, Kate Farms tends to be safest for people with complex allergies or mast cell disorders.
Tubie tip: check if your hospital has a variety of feed options before your surgery. If you have any allergies or conditions like MCAS, make sure there are options that will be safe for you. If not, ask if you can just bring your own. Kate Farms (as well as some other brands) will send you free samples while you figure out what works for you. They also have patient advocates available here!
At the bare minimum, you will need feeds, a pump, skin barrier and cleaner, and a bag to carry everything. With all tubie products, there are many brands and styles available, so don’t settle for something that doesn’t feel like a good fit! If what the hospital supplies isn’t great, request a different one. For example, your hospital may have Enteralite Infinity and Kangaroo pumps. Both work well, but some people simply prefer one over the other – it is ok to be picky! If you don’t like any of their options, consider getting your own. In order to get to a place where you can enjoy yourself and live life to the fullest without resenting your tube, you need the right gear to support you.
Some specifics to keep in mind when trying out gear – do your dressings and cleaner irritate your skin? Is your bag too heavy/bulky to easily carry around? Is your pump intuitive and a good size/weight to keep with you? Again, do not settle if your first attempt feels lacking! This is your life and your health, and you deserve products that support you.
Tubie tip: While these products are all must-haves, many other products exist that can make your tube life more care-free! There are so many, in fact, that we can’t fit them all here. We’ve compiled a list of our tubie friends’ favorites here!
Let’s face it, if your body is in need of alternative nutrition, it probably also requires medication from time to time. There are different ways to administer medications via a feeding tube. Ask your doctor to get your medications transferred to powder or liquid form. This can make a huge difference; it reduces the labor required each time you need to administer medications and, most importantly, is much safer than pills. Crushing pills can work, but it has a high risk of clogging your tube.
Tubie tip: if you can’t get a medication in liquid or powder form, get a good quality pill crusher. PillMills are fairly affordable and work well.
Getting a new medical device is overwhelming and can be scary at first, but it will soon become second-nature! Support groups are great to help with the nitty gritty details of tube use. You can learn game-changing tricks, discover new products, and meet people who understand what you’re going through.
You can find tube-specific groups online, and are always welcome to join our Friend in the Fight facebook group – a space for anyone living with or caring for chronic illness. We wish you the best as you begin your journey ♡