Can you live a normal life with a feeding tube?

5th-9th February 2024
Feeding Tube Awareness Week falls in early February each year. There are misconceptions surrounding why people might need a feeding tube, or even judgement. People with digestive diseases can need a feeding tube, we want to remove these stigmas at Guts UK Charity. Read our Feeding Tube Awareness Week page for more general information on feeding tubes, including what they are and why they might be required.

What impact can a feeding tube have on your life?

The impact a feeding tube/s has on your life differs from person to person, with the reason of needing a feeding tube being a big factor towards this. Feeding tubes may be needed temporarily or permanently. Feeding tubes can also be life-saving and are often life-altering. There are often presumptions or misunderstandings surrounding feeding tubes. Not every illness is visible, and you don’t have to be a certain size, or look a certain way to need a feeding tube. The reason/s you may require a feeding tube are definitely personal and specific to each individual.

Sarah’s story

Sarah has previously shared her story with us for Gastroparesis Awareness Month. Gastroparesis is a condition that affects the stomach and the name means stomach (gastro) paralysis (paresis). Because of gastroparesis, Sarah has had experience with four different types of feeding tubes, and wanted to share her experience with us this Feeding Tube Awareness Week.

Tell us a little about your feeding tube

“I have a PEG-J tube (through my stomach into my bowels). More specifically, I now have a low profile MIC-KEY GJ tube which has just been placed.”

How does having a feeding tube make you feel?

“After almost two years of experience, I’m finally starting to see my feeding tube for what it is. It is a device that enables me to do the things I want, rather than the thing that stops me. When a nasty virus a few years back meant that I had to have a feeding tube, I was terrified. I knew nothing about them and it seemed like a massive, scary step back. It took me a while to agree to have a feeding tube surgically placed and by the time I did, I didn’t have a choice. It saved my life. It was a huge adjustment but I knew I wanted to try as far as possible to be as active as I could, despite being attached to a feeding pump for most of the day.”

How do you make the most of your life with a feeding tube?

“Here are some things that help me to live with a feeding tube:

• I work to find solutions to meet my needs. I find ways to make my feeding tube and the care it requires to fit the lifestyle I want. I seek medical advice when needed and ask others in a similar position to myself for their tips and tricks. There is a lot of trial and error but I’ve adapted my mindset to this.
• I plan and have back up plans. For me, allowing plenty of time for planning and organisation allows me to focus on the exciting things. My feeding tube then takes a back seat. I have systems that fit into my daily routine and when I travel, I do my best to recreate these.
• I go gentle on myself. Progress isn’t linear! I’ve had a rocky ride of it and I am on my fourth type of feeding tube. Things have gone wrong and I have felt back at square one several times. In these moments, I try to listen to what I need. I ensure I’m gentle with myself and take the wins when they happen.
• I set broad intentions, not specific goals. Recently, I went to Australia to spend time with loved ones. Even on bad days, I found happiness chatting to friends, snuggled on their sofa. If I felt ready for other activities, I planned them, but I didn’t measure my success on doing them or not. I booked a scuba diving trip and a few days later, went and did it!
• I ask for help and support. I’ve not always been the best at reaching out but I’m getting better. It sure does make things easier when I do.”

Can you summarise life with a feeding tube?

“For me, life with a feeding tube isn’t easy. It takes work, never seems to go to plan and can sometimes come with pain and discomfort. It’s important to remember it’s different for everybody. My experience won’t be the same as other people’s. But it does mean that I can stay nourished, hydrated and manage gastroparesis myself without having to go to hospital.

Whilst gastroparesis is unpredictable and can still stop me in my tracks, I see my feeding tube as an enabler. I finally see my feeding tube for all of the things it does enable me to do. It doesn’t stop me from doing anything.”

Thank you, Sarah, for sharing your experiences. Because of you, we can get to grips with guts!