Thursday, 12 January 2012

What to do if you think you have Gastroparesis #Part 3

Please click here for #Part 1 and #Part 2

Testing...testing...testing...

There are a wide range of tests that can be done to diagnose Gastroparesis but you may need to persevere to get them. Not all hospitals have the necessary equipment to perform the tests so expect to have to travel a bit.

When you first start out on the gastroparesis journey you will usually be faced with a host of tests that eliminate any organic causes first. The tests you have will depend on a combination of your symptoms and your consultants clinical judgement. This is one of the hardest stages for patients suffering from gastroparesis because it can be a lengthy process and the standard ultrasounds and abdominal tests are not specific enough. In most cases they come back clear because they are looking for growths and abnormalities and not the overall functioning of those organs.

Initially, most people are referred to a surgical gastroenterologist due to the severity of the pain. You might be lucky and get a great surgeon who is happy to think outside the box and take the investigations further, but from personal experience here in the UK and from what I've heard from others around the world, it's quite unlikely. This is the turning point in the process and it becomes a case of sink or swim with the healthcare system. Be aware that if you are young, female and underweight and they can't find the cause, some doctors DO jump to the wrong conclusions and start looking at mental health issues instead such as; eating disorders, anxiety and stress. Also, not everyone losses weight at the same speed and if you are not visibly malnourished it can sometimes be difficult to get people to pay attention to your nutritional status and can be incredibly frustrating!

By this point you will most likely be tearing your hair out wishing that someone would find SOMETHING, just so you know your not going mad! One very important thing to remember, is to keep striving for a diagnosis. Just because one person can't tell you what's wrong, it doesn't mean that there IS nothing wrong. You are the best judge of how you feel and you know what's normal for you, so don't let anyone convince you that they know better!

Your main priority is to find a physician rather than a surgeon. The best option for gastroparesis patients is to find a Neurogastroenterlolgist but they are few and far between. The next best thing would be to locate a hospital which does gastric emptying studies (GES). That's where you will find the doctors who know about this stuff! There a couple of different gastric emptying tests, one is a 2 hour test and the other is 4 hours. In both tests you eat a portion of egg which has a radioactive tracing agent in with either bread or toast. They then take a series of x-rays to observe the time it takes for the stomach to empty. There is also a breath test version where again, you eat the eggs but you then blow into little bags at timed intervals. This test also takes 4 hours. It is not the easiest test for someone who can't eat much and vomits a lot but it's worth the struggle just to get an answer!

Finally BINGO!

So you had a positive GES and have been diagnosed with gastroparesis. There are three types of gastroparesis, they are: Diabetic gastroparesis, whereby the delay is caused by diabetic neuropathy. Post-Viral Gastroparesis, which is caused by an acute attack of gastroenteritis. Then we have the "I don't know why group" which doctors so nicely term Idiopathic Gastroparesis (my take on that term is that it means the doctors are the 'idiots' for not doing enough research, not that we are just the stupid bunch!) However it is also worth mentioning that those suffering from connective tissue disorders such as ehlers-danlos syndrome are prone to gastroparesis, but as yet it is not recognised as a cause.

There are a wide range of tests out there to assess gut motility and once you have had a positive GES test you may be asked to go for further testing. Especially if medications aren't helping or your symptoms are severe. Here is a list of the ones I have come across in my journey : Barium x-ray, Sitz-mark study, manometry, Capsule endoscopy (smart pill), and intestinal biopsy. These are all aimed at determining whether you have an isolated gastroparesis or further intestinal involvement.

So that's about all for testing apart from blood tests of course, which become second nature as you gradually start to resemble some kind of voodoo doll but hey, that's just part of the process x

If anyone would like to know more about any of the tests mentioned or would like to add to the list feel free to post comments!

N.B. Once again, I must stress that this guide is not intended to replace professional medical advice. 

1 comment:

  1. One omission.....damage to the vagus nerve can cause gastroparesis.

    ReplyDelete

Hi please post comments below, I love to hear from my readers so don't be shy X