Living with Gastroparesis
August is Gastroparesis Awareness Month.
This time a year ago, I was in the hospital for an admission due to gastroparesis, where I ended up having my first feeding tube placed due to gastroparesis. Not just my first but also my second was placed in that admission, and I went back to endoscopy to have it resited. And a week after discharge, my 3rd was placed. I am now on my 11th NJ tube. This process has been mentally and physically exhausting and one of the many hard parts of the last year. Almost every change has been through an admission to the hospital.
Gastroparesis is a condition that affects the stomach, causing it to empty improperly. It means stomach (gastro) paralysis (paresis), though the range of paralysis varies from mildly delayed to not emptying at all. Gatroparesis has a number of causes, the largest being diabetes. Though for many it is idiopathic and within that many people have conditions such as EDS or ME is another condition where delayed gastric emptying has been found more commonly.
I started having symptoms of gastroparesis at the age of 13. It was only in January of this year that I was officially diagnosed after a gastric emptying test, at the age of 20. However, I had a working diagnosis from the age of 18 onwards. The time without a diagnosis was very confusing as I had never heard of gastroparesis. And still, facing confusion or disbelief from others despite the diagnosis has been so hard.
This last year has been the most intense whilst living with gastroparesis. Constantly in and out of the hospital due to feeding tubes kinking, flipping or coming out due to vomiting, mental hunger, isolation, overwhelm, and so much else.
People don’t see how hard it is. They don’t realise how isolating it is to be surrounded by food, celebrating food-related holidays. I engage with food by chewing and spitting, it may sound gross, but it allows me so much joy and to feel as included as possible.
Another thing people don’t see is how much energy it takes to manage. Particularly when living with other illnesses like ME. I mentioned above how exhausting it has been to have the constant tube changes. My life has been a revolving door of hospital stays, tube feed set-ups, medication administrations, and so many other endless tasks. If I were still as severe as I had been, I wouldn’t be able to cope with it.
Awareness of gastroparesis is desperately needed both among the public and health professionals because it is still too poorly understood and many patients face disbelief and gaslighting.
I see you. 💚
— Katie
