One woman’s journey: ‘I would not survive without my feeding tube.’

Tens of thousands of Britons rely on a feeding tube to feed and maintain their bodies, yet most people do not realise how widespread – or difficult – the condition can be.

This week is Feeding Tube awareness Week, educating the world on the tubes used by many people within their everyday life in order to stay alive. 

Figures from the US charity behind Feeding Tube awareness week have revealed: “There are an estimated 189,036 paediatric patients and 248,846 adult patients, according to a study from 2017, meaning about 40% of people with feeding tubes are children.”

Feeding tubes are an alternative way of providing nutrition to children and adults who cannot eat by mouth, or cannot receive nutrition by oral eating.

There are many different types of feeding tubes, each suited to different conditions and symptoms. 

Feeding Tube Awareness Week was established in 2010 and the charity held its first awareness week in 2011.

Each year they aim to educate more people about feeding tubes and the impacts they have on people’s lives, both the patients and their families. 

Amber’s Story

Amber Riggs is a 20-year-old student from the Wirral, and has had a feeding tube for over a year now.

Her condition is called ‘Severe Gastroparesis’, a disorder which paralyses her stomach, making it extremely difficult to digest food.

The condition started in 2020 when she showed symptoms, particularly vomiting. By January 2021, she had lost 30kg extremely quickly and was in urgent need of a feeding tube. 

Amber described the symptoms she experiences as a result of her Severe Gastroparesis.

“A complete loss of appetite, bloating, distension of the abdomen, constipation, hair loss, pain and feeling full after a single sip of water.” 

In addition to this, Amber has experienced being sick up to 16 times a day.  

Her disorder caused her severe nerve damage, stopping her from eating or drinking anything without vomiting. She quickly became seriously malnourished. 

Amber said:

“I would not survive without my feeding tube now.” 

Whilst she relies on her feeding tube as a result of the Severe Gastroparesis, the disorder came along as a result of her pre-existing condition called Dysautonomia or Autonomic Dysfunction. 

This condition affected all involuntary bodily functions, including breathing, heart rate, blood pressure, digestion, bladder control and pupil size, stopping these functions from working properly without medication. 

Amber’s feeding tube journey

Amber got her first feeding tube in January of 2021, which was an NJ tube.

This kind of tube enters through the nose and bypasses the stomach to the jejunum (small bowel) in order to deliver nutrition which the patient can absorb.

This was replaced by April the same year, after Amber vomited the tube up. 

Whilst these tubes allow patients to properly absorb nutrients and avoid malnourishment, Amber spoke of the issues they can cause: 

“The thing with feeding tubes is that a lot can go wrong and it’s not the end of the road, it isn’t a cure.”

By December 2021, Amber progressed to a PEG-J tube, a permanent tube which is passed through the abdomen. 

This feeding tube has two tubes, one in the stomach and one inside that goes to the jejunum (small bowel).

In order to avoid her stomach paralysis, the tube was placed 1.4m down.

Amber said:

“I will continue to have tube changes which require sedation and hospital admissions for the rest of my life.”  

Despite the struggles of her feeding tube, Amber said:

“Since having a feeding tube, my quality of life has increased massively. I have had the energy to get back to doing things I love but it does always come with its struggles.”

Although, adjusting to her routine of around the clock care for her tube has been a massive challenge in itself. 

Despite the sanitary care and maintenance that the feeding tubes require, she said: “It’s also important not to forget the thought that if I didn’t have this tube I would not be here today, no matter how hard my day is, I wouldn’t make it through without it.”

She is attached to a machine 19 hours everyday in order to maintain her nutrition. 

Amber said: “Early on it took a very long time to find the right feed that suited my body and didn’t block my tube due to thickness.” 

During the day, Amber carries around a backpack containing her feed, something which can be extremely difficult since her weight is so unstable.

Amber told Merseynewslive: “Trying to do things like showering, swimming, sometimes going to school becomes extremely difficult.”

The new PEG-J tube allows Amber to drain contents as it has an in and out port, this gives her the ability to ‘vomit’ without further damaging her teeth and throat. 

Although, she said: “I do miss food sometimes, despite how ill it makes me. I’m only human and it is extremely tasty.”

Awareness and education of feeding tubes

Amber told Merseynewslive her tube has affected how people treat her. 

She said, whilst she had a nasal tube: “I got a lot of negative comments saying that I was attention seeking or people assuming I have an eating disorder, which is fine, it’s just not correct.” 

Amber commented: “Those assumptions can be really damaging to self esteem and even during diagnosis phases.” 

This week is in place to spread awareness and knowledge of feeding tubes and how vital they really are, Amber said:

“They deserve to be celebrated just as much as our stories need to be told because it is a battle.” 

Social media is important

She also highlighted the important role which social media has played in making her feel less alone.

The ‘Tubie Community’ has informed her of many things, from places to find cute tape for securing her tube to ways to bulk up feed. 

She said: “We know our conditions best because we live it everyday, yet our voices aren’t shared enough.”

Social media has also been a great place for Amber to share her story, the ‘Tubie Community’ are able to share whatever they feel comfortable disclosing. 

Amber has a YouTube page, from which she posts videos sharing her journey with a feeding tube, often answering commonly asked questions. 

She also hosts an open Instagram page, often posting ‘Ask Me a Question’ and answering queries her followers have about her condition. 

She believes this has been a great way to destigmatise common misconceptions. Amber said: “Not to mention getting rid of all the stigma of medical devices and the common saying ‘but you don’t look sick’ and ‘you’re too young to be sick’.”

Education is hugely important when it comes to informing people about feeding tubes and the conditions which lead to artificial nutrition. 

“I hope that feeding tube awareness week teaches others not only about all the uses of feeding tubes and that there are everyday people trying to just live their lives through artificial nutrition, but also that maybe a person who has just got a tube can feel less alone or scared.” 

Amber told Merseynewslive of how hard it is to have a feeding tube, not only for her, but for her close friends and family. 

Amber finished by saying:

“Tubes have an overall positive impact on my life and I really wouldn’t be where I am or who I am without it as it has made me stronger, it’s taught me a lot and enabled me to get back to doing things I love.”

To learn more about Feeding Tube Awareness Week and how you can help, visit https://www.feedingtubeawarenessweek.org/ 

To find out more about Amber’s story, visit her YouTube here and her Instagram here.