As August draws to a close were you aware it was Gastroparesis awareness month?
I wasn’t fully aware I even had this condition until the NJ tube was fitted, in fact we were pretty sure I was ok because after all the test came back all clear from the Royal London, we believed everything was fine. Then a procedure that should have taken twenty minutes took over an hour an a quarter and four attempts. In fact Mr Hussain was so persistent, the rest of the team wanted to give up but he refused until he got it into the jejunum. When he came the next day to talk to me by my bed about my gut motility and what my next steps were his advice was to go back to Professor Aziz and have a gastric pacemaker fitted, that was how bad it was. I was really shocked by this information. I had come into hospital for a NJ tube and come out with a diagnosis of Gastroparesis and advice for a gastric pacemaker to ensure that it help my digestion.
So with all this in mind what is Gastroparesis?
It is a chronic condition in which the stomach cannot empty itself in the normally
It means food passes through the stomach more slowly than usual, leading to symptoms such as:
feeling full very quickly when eating
nausea (feeling sick) and vomiting
loss of appetite
weight loss
bloating
abdominal (tummy) pain or discomfort
heartburn
You don’t have to have all of the symptoms, and they can come and go.
So what causes Gastroparesis?
Now obviously for me, it is part and parcel of Ehlers-Danlos but there are other issues and it all relates to the muscles and nerves which control the stomach muscles. It could be caused because of a complication of surgery for weight loss, or it may be linked to Diabetes, Parkinsons Disease, scleroderma, amyloidosis or even the use of opiate pain relief. So if you suspect you may have Gastroparesis you must speak to your GP and get tested straight away.
How is Gastroparesis tested?
1) a barium X-ray – you swallow a liquid containing the chemical barium, which shows up on X-ray and highlights its passage through your digestive system
2) a gastric emptying scan using scintigraphy – you eat food (often eggs) containing a very small amount of a radioactive substance that is detected on the scan; gastroparesis is diagnosed if more than 10% of the food is still in your stomach four hours after eating
3) a wireless capsule test – you swallow a small, electronic device that sends information about how fast it moves through your digestive tract to a recording device
4) endoscopy – a thin, flexible tube (endoscope) is passed down your throat and into your stomach to examine the stomach lining and rule out other possible causes
Hopefully the tests will have come back all clear and you can lead a normal life, however if the news isn’t so good, how do you go on, what now? Well it isn’t curable to start with, it can be treated in various ways but it depends to what extent the disease has struck.
Diet – Suggestion is to eat smaller meals more regularly, rather than three meals a day, try six small meals a day, then you aren’t getting bloated or feeling full. Also try liquid or softer foods they are much easier to digest therefore the stomach doesn’t have to work so hard.
Medication – There are various medications available but one has recently been withdrawn from use, due to my recent diagnosis I am not aware of the current which are available at this time.
Electrical Stimulation – Gastric Pacemaker, a small implant placed inside the stomach to provide electrical pulse to stimulate the stomach into keep working.
Botox – For severe cases the valve between the stomach and the intestine is injected with botox to relax it, to keep it open for longer so food can pass through.
Feeding Tubes – Various types, once weight drops to a serious level of malnutrition then enteral feeding needs to be taken over.
I think most of all I needed to be fully aware of my Gastroparesis diagnosis and i wasn’t. I didn’t know what it was and know I have read more about it and understand the condition a little better I hope to get to grips on how to handle my illness.