Feeding Tube Awareness Week 2024 – Dominika’s story

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. Dominika shared her experiences on living with a feeding tube below.

Tell us a bit about you

“I’m Dominika (although most people call me Domi for short). I’m 18 and originally come from Poland. I’m currently studying psychology as my dream is to be able to help people who need it the most. Aside from studying, I love playing the piano and singing with friends.”

When did your symptoms begin and what are they?

“As a baby, I had colic very often. This is when my first symptoms began. Growing up I complained of having a sore tummy and feeling sick quite often, but this always got dismissed as ‘stress’. At 13, I developed an eating disorder and my physical symptoms of undiagnosed gastroparesis were definitely one of the precursors for this. I was persistently nauseous, had intense stomach pain and bloating. Vomiting after eating only a tiny amount of food was very tiring but the most difficult thing for me was constantly being rejected by doctors. This made me feel very alone and it was incredibly difficult for my mental health too. I just wanted help.”

When were you diagnosed with gastroparesis?

“I got to the point where I was unable to keep even small sips of liquid down. A doctor realised that something was wrong. I was referred for a gastric emptying scan and was diagnosed with severe gastroparesis. This was a bit of a shock to me as I had been led to believe my symptoms were “just stress”. I felt a huge sense of relief. My gut feeling had always been right, and I finally had an answer. A few months later, I was also diagnosed with Ehlers-Danlos Syndrome which is the cause for my digestive disorders like gastroparesis.”

Tell us why you needed a feeding tube?

“I needed a feeding tube to be able to nourish my body and to give me relief from the dreadful symptoms that come with gastroparesis. I was simply relieved when I got my nasojejunal (NJ) feeding tube placed. This is a tube placed through the nose and through to the jejunum (small bowel).”

How did people view your feeding tube?

“I think that feeding tubes are often seen as a very last resort, and one’s quality of life is irrelevant. I know that for me, my NJ tube was not only necessary to nourish my body, but it was also necessary to improve my quality of life and give me relief from my symptoms. There is a big stigma surrounding feeding tubes that to need one, you must be underweight. That’s not always the case.“

How are you now?

“I’m now at Uni, studying and trying my best to gain all the knowledge I will need in the future. I know I still have a long way to go health wise as I am waiting for surgery to place a GJ tube (a tube placed into the small intestine via the stomach). I hope that this will provide me with the nourishment and energy I need to function normally.” 

What would you like others to know about having a feeding tube?

“Feeding tubes save lives. Not only physically by nourishing our bodies, but also mentally as they provide relief from horrible symptoms. We are also just normal people! People with feeding tubes absolutely can (unless they have been directly told not to by a doctor) eat normal food and drink normal fluids too. When I had my NJ tube, I would eat bits and pieces of food here and there when I was really craving something, and I knew that it wouldn’t aggravate my symptoms massively.”  

Tell us why you’re sharing your story this Feeding Tube Awareness Week

“I’ve decided to share my story this year as I would like others to know that they are not alone. I think it’s so important to speak up. By sharing my story, I hope others will be encouraged to do the same. To embrace their illness instead of trying to hide it. My hope is also that people who don’t have feeding tubes realise that we are just normal people and that there is no need to stigmatise medical devices.” 

Thank you so much, Dominika, for sharing your story today. Because of you, more people will get to grips with guts.

Find out more about Feeding Tube Awareness Week here