February 5-9, 2024 is Feeding Tube Awareness Week.
I’ve had a feeding tube for over a year now. As such, I am using this Feeding Tube Awareness Week to cover what I have learnt so far in a 10-part series. This is Part 6.
Here are links to the full series:
- Introduction to Feeding Tube Awareness Week
- History of Feeding Tubes
- The Different Types of Feeding Tubes and How to Place Them
- What Kind of Illnesses Might Need a Feeding Tube?
- How Do I Know If I Need a Feeding Tube and How To Get One?
- What Essential Supplies Do I Need for Tube Feeding?
- How To Make Tube Feeding Easier
- The Ultimate Guide to Showering With a Feeding Tube
- How to Reduce Stigma Around Feeding Tubes
- My Best Tips for Tube Feeding
Essential Supplies for Tube Feeding:
Adapting to a feeding tube for the first time can be a significant transition. Managing a feeding tube requires certain supplies to ensure cleanliness, comfort, and proper function. Ensuring you have the essential supplies on hand is crucial for a smooth and comfortable experience. Here’s a comprehensive list of supplies for people who are new to tube feeding:
Feeding Tube Supplies:
1. Feeding Pump:
A feeding pump is a device that controls the rate and timing of formula delivery. Your healthcare provider will prescribe a specific pump based on your needs.
For example, my pump has a dual-bag system: one for formula, and one for water. As I only feed overnight, I don’t need one that is portable, but it does have wheels so I can easily move it around.
Others have to feed pretty well 24/7, and thus have smaller portable devices that can be carried around in a backpack everywhere you go.
2. Extension Sets:
Tubing that connects the feeding tube to the pump. It provides flexibility and ease of use. This is often automatically provided to you when you get your pump.
3. Feeding Bag:
A bag that holds the nutritional formula during feeding. Some bags come pre-filled with formula, while others allow you to pour in the prescribed amount.
If you have a pump like mine, it looks like an IV pole and you hang the bags from the feeding pump pole. If you have a portable device, you put the feeding bag into your backpack along with the pump.
4. Syringes:
To administer medications or flush the tube. Your healthcare provider will guide you on the appropriate syringe size. Some medications can be given to you in liquid form, which can then be easily pushed through the tube. Other times, you may have to crush up pills and dissolve them in water to be able to push them through the tube with a syringe.
5. Nutritional Formula:
A prescribed liquid formula containing essential nutrients. Discuss the type and brand of formula with your healthcare provider.
There are so many different formulas, and you may not tolerate all of them well. I have gone through 6 different formulas made by 3 different companies before settling on my current one.
Some are completely artificial, while some are made with real food. They can also focus on different things – being high in protein, low in fiber, etc. It can take some significant trial and error to see which one works best for you.
Additionally, not all insurance will cover all types of formula, so be sure to discuss this with your health team as well before changing formulas.
Wound Care and Recovery Supplies:
6. Sterile Gauze or Tubie Pads:
Tubie pads, also known as g-tube pads, are soft and absorbent pads worn around the tube site. They help absorb any leaks and enhance comfort. There are tons of people that sell these pads on Etsy at affordable costs.
However, personal preferences vary. Some individuals, like me, just prefer using disposable wound dressing or gauze and medical tape instead. I find that is easier because my tube leaks a lot. I buy my supplies at any pharmacy or online from Amazon.
The key is to experiment and find the combination that provides the best comfort and security.
7. Medical Tape:
To secure the tube in place and keep it from moving or getting snagged on clothing. If you have a tube that enters through your nose, you will want to tape it to the side of your face to make sure it doesn’t move around. A lot of pharmacies and online stores now sell tape with cute designs for kids (or kids at heart).
If you have a tube in your abdomen, you will also likely want to tape it to make sure it doesn’t move around too much, as that can be uncomfortable.
When you first get a feeding tube via your abdomen, you are given a ‘dangler’ tube. This means you will have a significant amount of tubing coming out of your stomach that is always there. This is the type of tube you will want to tape up so it isn’t just hanging freely where it can easily get caught on things and be pulled.
Once it has healed enough, it really shouldn’t hurt, even if it gets pulled a bit. At that point, a lot of people will just tuck the tube up into their bra, or down into their pants. I found it most easy to tuck into leggings.
Once you’ve had a dangler for at least six weeks, and the tract has healed, you may be able to switch to a ‘low-profile’ or ‘button’ tube. This replaces the dangler with a small piece that is pretty flat against your skin, so you no longer have to worry about it getting caught on anything. It’s also way less visible under clothing, and even easy to cover if you want to go swimming.
8. Antiseptic Solution:
To clean the tube site as per your doctor’s instructions.
9. Skin Barrier Cream or Ointment:
To protect the skin around the tube site from irritation or redness. The skin around your tube will probably get very dry and red, especially if the tube is often rubbing up against it (which is common with the dangler tubes). Barrier cream can really help protect your skin.
Comfort and Pain Management:
10. Ice Packs and Heat Packs:
Ice packs can help reduce swelling and pain around the tube site. Heat packs may provide comfort in case of muscle tension. I find they’re both nice to have when you are spending a lot of time in bed or on the couch.
11. Pain Medication:
Depending on what kind of procedure you get, you may need painkillers after. Most people have quick recoveries from their feeding tube placements.
I did not. I ended up spending four days in the hospital after my surgery, and was in extreme pain for months. My doctors did not know why, and I had to take prescription painkillers for a really long time just to get my pain to a manageable level.
Nutrition Monitoring and Hydration:
12. Weight Scale:
To monitor changes in body weight, which can be an indicator of nutritional status. Your health team will likely ask you to provide them with your weight on a regular basis to help monitor whether you need to increase or decrease your formula.
13. Oral Hydration Products:
If oral intake is allowed, keep oral hydration products on hand. This can be water, tea, Gatorade, or juice. Additionally, if you can drink some liquids, they may try to have you drink some of your nutrition through drinks like Boost and Ensure.
Miscellaneous:
14. Patient Education Materials:
Information provided by your healthcare team on tube care, troubleshooting, and emergency procedures.
You should also get information on what tests and procedures you’ve had done, when, by who, and what the results were.
15. Emergency Contact Information:
A list of emergency contact numbers, including your healthcare provider, dietitian, and local emergency services.
16. Notebook or Journal:
To record daily observations, questions, or concerns for discussion with your healthcare team.
17. Comfortable Clothing:
Loose-fitting clothes that allow easy access to the tube site for care and make you feel comfortable.
18. Supportive Pillows:
To provide additional comfort and support during rest. I found that for about a month after my surgery I could only sleep in one very specific position that was half sitting up half lying down. It required about 6 pillows perfectly positioned to work.
It’s crucial to follow your healthcare provider’s specific instructions regarding the care and maintenance of your feeding tube. Regular communication with your healthcare team will help address any concerns or adjustments needed as you adapt to life with a feeding tube.