As regular readers know I have Ehlers-Danlos syndrome. Ehlers-Danlos quite often seems to bring along quite a collection of it’s friends to play with those of us who have it. It’s really not a case of the more the merrier though!
For some of us, including myself, EDS affects the digestive system. It can cause a variety of problems there including delayed gastric emptying, otherwise known as gastroparesis.
What is Gastroparesis?
Gastroparesis (or GP for short) literally translates to ‘paralysis of the stomach’ but it is more accurately described as delayed gastric emptying. It’s a chronic condition in which the stomach is unable empty itself in the normal way. Sometimes this is caused by damage to the vagus nerve as a result of uncontrolled diabetes or even surgery. Other times the direct cause is not known as in connective tissue disorders like EDS.
In gastroparesis food passes through the stomach much more slowly than in an average person, sometimes sitting in the stomach for many hours.
This causes an array of symptoms. From something as simple as feeling full very quickly when eating only a small amount and loss of appetite to the unbearable: almost constant nausea and vomiting. Weight loss, stomach pain, heartburn and painful bloating are also common as is constipation among those of us with GP. All of the symptoms can vary and can seem to come and go.
At present, most treatments are aimed at symptom management because there currently is no cure.
Many people, like myself, are able to manage the condition through medications and careful diet. Others may require to be tube fed or, very rarely, fed intra-venously.
My Journey With GP
During my journey to a diagnosis of delayed gastric emptying I lost a shocking amount of weight. At my lowest point I weighed only 60kg. Quite terrifying for someone like myself who is 6ft tall!
Eventually I found a gastroenterologist who was familiar with EDS and delayed gastric emptying. He was also willing to prescribe the Ensure nutrient drinks I so badly needed. I was unable to keep anything but thin soup down at that point and that was if I was lucky! No one else would write them up due to the cost despite the pleas of my family that I was starving. I was evidently malnourished, my face was sunken, my skin was dull and lifeless and I slept a lot as I didn’t even have the energy to be awake.
Fast forward to today and I’m managing my condition pretty well through diet and medication. I’ve even managed to put a little bit of the weight I lost back on now though I don’t think I will ever be quite the same size again! My skin still suffers with break-outs due to nutritional deficiencies as well as my hormonal imbalance. It’s a constant battle to keep it under control and hide the blemishes when they can feel like they’re taking over.
Gastroparesis is an awful condition that takes over the lives of it’s sufferers forever, but there can be a little light at the end of the tunnel.
If you’re in the UK and have been diagnosed with gastroparesis, GIFT is the only UK based charity supporting the condition to my knowledge. If you know of any others please do let me know!