Feeding Tube Awareness Week - Emily's Story
Meet Emily, one of our incredible health advisors, as she shares her empowering and inspirational story with us this feeding tube awareness week.
Tell us about yourself and when you started working for IC24?
I’m in my 30’s and have various chronic health conditions which have led to me being a full-time wheelchair user and using a feeding tube. I enjoy being active and take part in wheelchair fitness activities as much as possible. I enjoy being out in nature, gardening, reading, and watching crime dramas and documentaries. I also have an assistance dog in training whom I love and devote a lot of my time to.
I joined IC24 in 2022. I used to work in international development, specialising in war zones, but had to give that up after my health deteriorated. I’ve always been interested in the healthcare sector so after taking some time off work to stabilise my health, I decided to apply to work within the 111 service.
How have you found working at IC24?
The fast-paced nature of the job can be hard to manage while taking time-critical medications or dealing with my feeding pump alarming and setting up my next feed. I have worked with my team managers to find solutions for this and feel supported in making it all work together.
I really enjoy being a Health Advisor. I like connecting with patients and helping them access the care they need. I find I can use my own extensive experience of medical systems and illness to empathise with patients, reassure them, and help them access services.
When did you first need to start using a feeding tube? What were your early symptoms?
I’ve had difficulties with digestion and absorption of food for a long time. Feeding tubes had such a negative connotation that I avoided them at all costs, and I wish now that I had transitioned over to one much sooner.
In 2020 my symptoms started getting much worse. I would have severe pain after eating and often vomited. I tried several different diets, sticking to more easily digestible foods, then pureed meals, and finally a solely liquid diet. None of these helped and my symptoms continued to worsen. Eventually, I couldn’t take anything orally without being in extreme pain. I was referred to some specialist dieticians who took immediate action. Unfortunately, by this point I had lost 2/3 of my body weight and was very underweight, malnourished, and dehydrated. They decided to place a feeding tube but due to how unwell I was, I spent about 4 months in hospital. Since then, I have had many nasal feeding tubes placed and then in April 2023 I had a surgical permanent tube placed.
How has having a feeding tube changed your life?
My life is so much better since having a feeding tube. Now I receive 100% of my nutrition and hydration through my tube. I’m finally fully nourished and hydrated which has given me my life back. I’m healthier and I have energy to be able to live my life and work. Although I still have a lot of fatigue, I’m not stuck in my bed all day. My feeding tube also has gastric access meaning I can drain my stomach contents, this means I'm able to enjoy drinking and eating a few things knowing I can drain it off instead of bringing it back up.
Having a feeding tube does of course add some complications to life. If my tube malfunctions in any way (getting blocked, breaking, displacing from my intestines into my stomach, etc.) I have to be admitted to hospital until they can replace it. My tube also adds a lot of demands to my daily life. Setting up feeds and doing all my medication through my tube takes a lot of time; I also have to maintain it with cleaning, checking the stoma site, and checking the tube is working properly. It also means I’m connected to a bag containing my feed and a pump 24/7. This can make doing some tasks harder, as I have to navigate the tubing and moving a bag around.
Have you ever felt a stigma around your feeding tube?
When I had nasal feeding tubes, they had to be taped to my face, so they were very visible. I found this very difficult as strangers would often stare and some would make negative comments. I learned to mainly ignore it, but at times it would affect my self-esteem. Now that I have a permanent tube that comes out of my abdomen, it’s a lot less noticeable, so I get fewer stares. On the flip side this does mean I often have to explain my situation more. There have been times when I’ve felt excluded. Friends are going out for a meal and don’t invite me, assuming I wouldn’t want to go as I can’t eat, but I am so used to not eating now. I’m often happy to tag along and just sip on a drink and enjoy the social aspect. Sometimes people also don’t invite you to things as they assume your tube would prevent you from taking part—swimming and camping are good examples of this. But feeding tubes really don’t prevent you from doing many things in life.
Many people jump to conclusions about feeding tubes; they think that you either have an eating disorder or that you are dying of cancer. This means you can face judgement or pity. The truth is people have feeding tubes for a huge range of reasons and many people are very thankful for their tubes as it keeps them alive. A lot of people feel uncomfortable around people with feeding tubes as they don’t know what to say or how to include them. Personally, I am always happy to answer questions and want to be included, just like anyone else.
What would you like others to know about having a feeding tube?
No two people with feeding tubes are the same. People have different feeding regimes, different levels of oral intake, and different diagnoses, not to mention the huge range of feeding tubes that exist.
People often see feeding tubes negatively, and while they do have their downsides, they are amazing life-saving medical devices that should be celebrated because of the life they give their users.
Don’t stare and don’t assume. Ask appropriate, polite questions, and include us like you would anyone else. We can decide if it is an activity we can, or want, to partake in.