It’s been almost a year since I had my PEG tube (a type of feeding tube) fitted and as it’s also Feeding Tube Awareness Week, I wanted to take this opportunity to reflect on my journey.
Before getting my PEG, I had suffered almost 6 months of starvation. I could barely swallow anything and the longer it went on, the worse it got. By the end of it, I couldn’t even keep water down because my stomach was so angry with me. I eventually managed to see the good gastro dr who immediately told me he was going to admit me to the ward to get a PEG. Brilliant!
I know it’s an unusual reaction but by this point I’d already come to terms with the idea and just a few weeks before I had been begging, through tears, for an NG tube (a temporary feeding tube). The way I was treated in that appointment still makes me angry today. Instead of acknowledging that I was starving and incredibly ill, I was waved off with a prescription for acid reflux tablets that a) I’d already tried and they’d made things worse, b) contained lactose that I can’t have c) I couldn’t swallow them and d) I only had acid because I wasn’t eating. I was also told she’d refer me to the eating disorder service despite me being very self aware and knowing that this wasn’t my anorexia returned. She also said she’d send out some supplement drinks that contained meat despite me being vegetarian and also saying that I’d tried a similar type a few months before and couldn’t swallow them. I had tried to explain that EDS is strange and just because the one test they did told them nothing, it didn’t mean there wasn’t a problem.
Anyway, back to the PEG. Despite the good doctor saying I needed a PEG, and despite him outranking most people in his team, his colleagues continued to act as if I wasn’t going to get one. Nurses tried to get an NG tube into me but failed for various reasons, one key one being that by this point I was the most nauseous I’ve ever been in my entire life. If I moved, I was sick. That isn’t especially compatible with having something shoved down your throat. They told me repeatedly that I was being obstinate because I didn’t want to have food and they ordered an emergency mental health assessment, with the primary goal of diagnosing an eating disorder. It failed. I did not have an eating disorder. I had a swallowing disorder. Thankfully the mental health team saw that and told the doctors that I was in an expected amount of distress given my physical symptoms.
Eventually I got my PEG.
It was a long, torturous and dangerous journey. I remain incredibly grateful to the doctor who continued to fight for me to have a PEG, without him on my side I don’t know what would have happened. I imagine it would have involved seeing the eating disorder team, some severe issues with my internal organs, or death.
I got there. Eventually. And, as I knew it would be, having my PEG has revolutionised my life.
For six long months, I could barely get out of bed, let alone leave the house. I lay in bed, with something playing on my laptop. I would force myself to stay awake until 4pm when my carers came. I went without medication because I couldn’t swallow it. I was, thankfully, on pain patches and still able to swallow a small amount of liquid pain relief. But I couldn’t take my antihistamines, my antidepressants, or the various other tablets I’m on. I lost six months of my life because doctors refused to accept that there was anything wrong with me. I was told to just eat. I was told that the tests were fine and expected to just magically be able to swallow.
It took a good few months after my PEG was fitted before I had any semblance of a life. My body had a lot of food to catch up on, a lot of internal healing it needed to do and a lot of weight to gain back. But bodies are amazing and it got there. I got my brain back, I got strength back and I got my life back.
My feeding tube has allowed me to go to the cinema, to go to the theatre, to go to the beach, to see friends, to go to uni courses and museums, art galleries and to do art myself! I have been able to read and write and pay attention to documentaries. I have been able to spend time in the park and pass time in cafes with cups of tea and books.
Some people see feeding tubes as a sentence. I see mine as a liberator.