Adapting to living life with a feeding tube
The purpose of this article is not to get people’s sympathy, but to share how a life-changing event made me realise the need for making the world around us (our workplaces, educational facilities, etc.) more inclusive for people with visible differences (like me), and for those with any form of disability/illness.
My story begins in 2008, at the age of 32, when I had to undergo spinal decompression surgery. I had been experiencing severe back pain for several years – which had gotten worse after having my two children, and after a series of heavy falls, which had damaged the discs in my lumbar spine.
Immediately after the surgery, I knew something was not right – my stomach was very painful, and I would literally vomit everything I tried to eat and drink. Over the coming months, my weight plummeted and after a number of investigations confirming a lack of motility in my stomach and bowel, I had my first feeding tube placed.
As my stomach was literally rejecting everything, I had a nasojejunal (NJ) tube placed. This tube goes through the stomach and the end is placed in the jejunum – the middle segment of the small intestine found between the duodenum and the ileum.
At first, it was slightly uncomfortable having a tube in my nose, and at the back of my throat. When I first fed through the tube, I would feel a cold sensation at the back of the throat when the feed was passing down the tube, but over time, I have become used to that.
As a young person and I am sure I am not alone here, many of us want to stand out from the crowd, when you get to adulthood, not so much. This has been one of the hardest things for me – going out and being stared at, or people that I do not know coming up to me in the street and asking me why I have a tube.
Very early on, I went to a carol-service with my daughter and as I entered the church, the school caretaker, asked in a very loud voice, why I had the tube. It literally felt like everyone in the church that day heard her question and turned their heads to stare at me. I felt incredibly vulnerable and so sad for my daughter – as if I had embarrassed her. (I had not; it was just how I felt).
I understand that for the most part people ask because they are curious or even concerned but over the years, I am not ashamed to admit that I have been upset by people’s reactions towards me. Primarily because it reminds me that I am different.
I remember one evening leaving the hospital and as it was pouring with rain, I decided to get a taxi home. When the taxi arrived, the driver got out, locked the doors, and asked me if it was catchy – pointing to the tube. I said it was not, and he unlocked the doors and took me home. I cried when I got in my front door. Had it been a dry evening, I may have had a different response…and I would have probably ended up walking home!
Despite feeling self-conscious, the tube also affected me socially – I do not get my nutrition in the same way as everyone else – so this forced me to rethink how I did everyday things like dining in restaurants and travelling. Initially, for example, I avoided any travel, but I have since travelled abroad many times. It is different to many people, whereas most people are cramming their suitcases full of clothes and shoes; my suitcase is packed with my feeding equipment – the pump, the feed itself, giving sets and syringes. Let me just say I am always very relieved to see my suitcase at my destination.
Sometimes I may also join friends and family socially on a night out, but this too comes with a compromise. Unlike normal feeding where the stomach acts as a reservoir, feeding given as a bolus directly into the jejunum can cause severe pain, diarrhoea and a condition known as dumping syndrome. This results from the rapid delivery of feed into the jejunum. Therefore, feeds delivered into the jejunum always need to be given slowly by continuous infusion. If I go out, and I cannot make up my feeding time, this will leave me slightly deficient in terms of my nutritional intake. You can manage this occasionally, but not regularly.
My return to work…
I returned to work around 6 weeks after the first feeding tube was placed. On my return to work, due to organizational changes that occurred in my absence, I was reporting to a new line manager, whom I had not worked with previously.
I have always tried to do my best in life. My upbringing had its issues, and I always vowed that whatever I ended up doing, I would do it to the best of my ability and I would always bounce back whatever happened to me…but of course, she did not know that about me.
I believe she meant well, but her actions really upset me. Despite been assessed as fit to return to work initially, she insisted that I got regular ‘fit to work’ certificates from my GP (which my GP found very frustrating), and continually questioned whether I should be working at all.
She took me off projects because of my “health situation” – often without discussing with me first – I would found out via email at the same time as the person taking over the project from me. On several occasions, she would also say that she wished she had my problem, as it would help her to lose weight.
What upset me most about this was at that point, work was the only thing I felt I was still good at. So being taken off projects for health reasons and not performance issues, even when I felt I was best placed to lead them, really affected me. My confidence plummeted. Thankfully, her treatment towards me was acknowledged and the company responded by providing me with more support, and a change in management.
Over the years that followed, I had new surgeries, tests, I tried different types of tubes – such as the PEG-J, and jejunostomy tubes, as well as central lines when my nutritional status declined further. Unfortunately, I also experienced multiple episodes of sepsis, leading to complications such as an enlarged liver and spleen and one particular episode left me on the verge of multiple organ failure. I was in hospital for nearly 9 months that year due to some of the issues I have just mentioned.
My new manager remained supportive and after each hospitalization, I would return to work. During that time, my own acceptance of the situation improved as did my confidence, and since then I have changed roles several times and utilized opportunities within the company, that previously I would not have done. I am now a Senior Director, leading many groups and present at external events and congresses on behalf of the company.
So why do I feel like we need to be more inclusive?
The tube is a source of nutrition and hydration for me, and I now understand that without it, my life would be very different. This tube has enabled me to be successful. I can still go out, work, and reach my goals. I have accepted my situation now (although it did take time) but I believe there is still some acceptance required by those around me.
Often people are reluctant to invite me for lunch, I get that, when people get to know my story, sometimes, they feel guilty for eating around me. There is no need to, first, my body has adjusted and I no longer feel hungry in the same way that others do. However, I also understand that other people need to eat. I will happily just have a drink and chat away instead.
People are also unsure of whether they should mention my tube, and all I would say here is that I understand that people are inquisitive, and I am happy to share my experience, but the context is so important. I was once giving a training session and as people filled into the room, one person pointed and asked me what the tube was for. I cannot remember how I responded, as I have said, I am happy to share my experience, but pull me to the side, or wait to the end. Singling me out because of the tube, will always be very emotive for me.
I do struggle with offsite meetings, which often involves long working days and then mandatory social events that revolve around food. I remember in the preparation for an offsite meeting last year, someone asked if I was excited and I told them I had mixed feelings. Obviously, I was happy to meet and interact with everyone, and learn about different projects/initiatives, but I was worried about the long days and then the mandatory evening events. Again not because I felt uncomfortable, but because of the impact on my own nutrition.
When I explained this to the person, they then asked why I could not bolus feed…I do not expect people to understand how this has changed my life, I am not even sad that this happened to me. For this made me, the person I am today, but just some understanding or compassion at times is what really helps me. I feel like I have to continually, justify why I do things for some people, and that is not right. I do not expect special measures for me, especially when I may be in a minority, but challenging me on things can still be upsetting as I feel I try and get on with things as best as I can and go along with the majority wherever I can.
Life is not always easy, despite the feeding tube, my nutritional status is not completely ideal– I developed early-onset osteoporosis, and the feeding tube is believed to have caused multiple gastric ulcers and erosions in my GI tract, which can cause considerable pain and discomfort. I also have to have regular endoscopies to replace the tube, and to take biopsies.
However, I try not to talk about these aspects; after all, everyone has their own challenges to deal with.
“Life is a JOURNEY, not a destination“(Ralph Waldo Emerson)
As young people, we may map out our lives – going to university, working in a certain job or sector etc. but often we may be thrown a curveball that change our lives, whether visible or invisible to everyone else. We do not plan for these, and if they happen, they can affect us in ways we can never imagine.
For me I have learnt over the years to shift my focus to the positive aspects of my life, what motivates me, my achievements, my support network, to become more accepting of my situation and others, and the importance of looking after myself. That is a journey, it takes time, and there have, and will be hard days to come. However, I have to offset that with what I have achieved, and will achieve in the future – and that makes everything worth the extra struggle.
I will always be grateful to my company for the support they provide employees like me with – such as the reasonable adjustments to work and a great workspace. But, my ask, is that we can ensure we all educate ourselves on the importance of being inclusive, kind and more accepting of others. After all, we all have similar goals in life – to be well, happy and successful.
I feel lucky for being employed in a good company when my life changed, but I am aware of companies that employ people based on looks. Legally people with differing abilities are entitled to fair treatment when it comes to recruitment, but I would challenge that every company thinks in the same way as the company I work for.
I also believe that when you have differing abilities, you do not necessarily understand your rights, or have the confidence to believe you can be an integral part of a team and therefore be hesitant about applying for jobs in the first place.
Even if I was the best candidate for a job, would every company be willing to employ someone with a feeding tube? I remember a close friend, who has a small business, saying that if she did not know me, she would not employ me if I turned up for an interview. Legally she would not be able to say it was because I had a feeding tube as we know, but she told me she would have found another reason, even if I had been the best candidate. Her reason was that likely, I would have more medical appointments and medical leave than someone else would, and she would need to make reasonable adjustments which she could not afford to undertake. Her words shocked me, but I do not think she is alone in her thinking.
We need to break down these barriers in society, we need to make people feel confident in their own skin, respect and support our differences and importantly get to know someone properly before judging them and righting them off.