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 10.
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
To cap off my Feeding Tube Awareness Week series, here are my best tips for tube feeding:
General:
- The tubie community is diverse and supportive, sharing insights and encouragement. Engaging with fellow tubies can provide valuable perspectives, advice, and emotional support
- You will have to advocate for yourself at some point. Advocating for yourself empowers you to actively participate in your healthcare decisions. You are the expert on your own experiences and preferences, and your voice should be central to the decision-making process. The number one way to effectively advocate for yourself is to educate yourself as much as possible about your medical condition, the reasons for tube feeding, and the specifics of your care plan. The more informed you are, the better you can advocate for your needs.
- Keep a Health Journal: Maintain a journal to track your symptoms, experiences, and questions. This can serve as a valuable resource during discussions with your healthcare team. Here are some important things to consider tracking:
- Your weight
- What you’re eating
- Gastro symptoms, including bloating, cramping, and vomiting
- Medications you’re on, their doses, and when you take them
- Any questions you have
Feeding Tube and Formula:
- When you first start using a feeding tube, start your formula at a very low rate and slowly increase it over time
- If you’re feeling extreme discomfort or bloating, that could be a sign that you’re running the formula at too fast of a rate
- Only push room temperature formula and water through your feeding tube. Cold liquids are more likely to make you cramp up and can be very painful. If you have to keep your formula in the fridge, make sure you take it out about 30 minutes before to allow it to warm up before administering it to yourself
- Once you open your formula, it needs to be used within 24 hours. Otherwise, it should be thrown out.
- Wash your feeding tube supplies at least once a day, or every time you feed. You can wash it with vinegar, or warm water and dish soap. It’s important to clean and rinse your tubes out properly because any old formula or soap that stays in the tube can then enter your body and lead to severe cramping.
Logistics:
- Some pharmacies and home care programs can take up to a week to get your formula stocked, so make sure you set up your refills well in advance
- If you will be using your feeding tube during the day, get a backpack that fits your pump, bags, and any other supplies you may need. You also might need to keep an ice pack in your bag to ensure the formula stays cold
- Keep an emergency bag of items with you, including a spare set of tubes, a syringe, and gauze pads.
- Figure out a way to organize all of your supplies that works for you. I have a 5 drawer rolling cart that has all of my prescription medication, all my gauze, all my syringes and tips, all my skin creams, and all my extra feeding bags.
Clothing:
- You might have to change the kind of clothing you can wear
- I can get so bloated that I can’t wear leggings or jeans
- If you have a portable pump that you wear during the day, you may need to figure out how to most comfortable run your tube into your backpack. This may be through the neck or arm hole of your shirt, or by cutting a hole in a pocket.
- More and more retailers now sell adaptive clothing with cut-outs or slits that provide easy access for the feeding tube. For example, Target has a whole line of super cute adaptive clothes for children
Wound Site:
- Wash it everyday
- Monitor it closely for signs of infection, as these can be really painful and dangerous
- If you have significant wound pain more than a few weeks after your procedure, that is not normal. Talk to your doctor as there are several things you can try such as painkillers or topical lidocaine cream. It could also be a sign that the wound is not healing properly. I had tons of pain at the wound site for months, and often still do. My doctors believe that the tube was just placed a tiny bit too close to a nerve, so there’s not much that can be done.
I hope this series has taught you that you are not alone, and there is a community ready to offer guidance and support at every step of the way. If you have any more questions, please feel free to ask me!