Raising Awareness During Gastroparesis Awareness Month (English)

It’s August, a nice month to me. There are some family birthdays in August and the weather is often nice as well during this month. But there is another reason why August is an important month for me. August is gastroparesis awareness month. Gastroparesis is not well known, at least not in my country. It is often overlooked, and that is exactly what happened in my case as well. I struggled a lot with this, as the disbelief and uncertainty hurt a lot during the time that I was still undiagnosed. It took me more than two years and a lot of effort to finally find a doctor that would find out what was happening to me. Gastroparesis sufferers surely do not get the attention they deserve. I’ve seen so many people struggle with this illness. It’s not just an annoying stomach ache, it is life changing.

Allow me to tell you a little more about gastroparesis. General facts as well as some of my personal experiences.

Let’s start off with what Wikipedia tells us about gastroparesis:

Gastroparesis (GP) (gastro- from Ancient Greek γαστήρ gaster, “stomach” and πάρεσις -paresis, “partial paralysis”), also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for an abnormally long time.”

OK, that sums it up quite well. The symptoms that are often seen with gastroparesis include: nausea, vomiting, loss of appetite, stomach pains, early satiety, acid reflux, abdominal bloating, changes in weight and palpitations. Gastroparesis on its own is not a deadly disease but in extreme cases it can cause dangerous situations because of the symptoms. I do not want to go into too much detail but I used to be friends with a woman on Facebook who I really liked and spoke to often, I met her in a gastroparesis support group. She suffered from very extreme symptoms and she sadly passed away.

Gastroparesis has some known possible causes but it is often ruled idiopathic (like in my case), because doctors just can’t find out why it suddenly started developing. The possible causes that are known are: (uncontrolled) diabetes, gastric surgery with damage to the vagus nerve, certain medications and/or abuse of those (for example narcotics), Parkinson’s disease, MS (multiple sclerosis) and in some cases by conditions such as amyloidosis scleroderma. During the time that I was diagnosed I had several tests done, and the one that finally showed gastroparesis was a GES (gastric emptying study), which is the most used test when doctors suspect or want to rule out gastroparesis. Often doctors will also do other tests that may include: blood tests, gastroscopy (upper endoscopy), esophageal manometry and x-rays.

Finally finding a doctor that believed me was hard. All of them started off by saying that I was just making it up for attention or that my nausea was caused by stress. I was even wrongly diagnosed with a mental illness, which resulted in a very hurtful period in my life. If gastroparesis was more well known it may would not have happened to me. I don’t want what happened to me happen to others as well. I remember searching the internet for answers for hours and hours, desperate to find out what was happening to me. It should not be this way. Gastroparesis should be a prominent or at least present thought in the minds of doctors whenever they encounter a patient with symptoms of unexplainable nausea or other known gastroparesis symptoms. Hopefully there will be more awareness after time, because it surely is needed. I have dedicated a part of my life to raising awareness for chronic illness and also helping others who are a struggling. Because I once was just a girl desperate for certainty and understanding. New to the life of chronic illness and honestly terrified. I want to help others who feel like that now. I feel like that is a duty of mine, and gastroparesis awareness month is a perfect moment to shed some light on gastroparesis: an illness that has changed my life and changed the life of others and their families as well.

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2 Comments Voeg uw reactie toe

  1. bouwmanm schreef:

    Mensen met een chronische ziekte kunnen altijd hulp van een ervaringsdeskundige gebruiken. Fijn dat je dat ook doet!

    Like

  2. tlohuis schreef:

    I wish you the best on your journey with Gastroparesis. I also have this terrible illness. I’m spreading awareness through my blog for Gastroparesis Awareness Month. I’m going to share my story over several blog posts because it’s a long story, as you well know. Doctor’s need to better educate themselves as to the problems and risks involved with this disease. Too many people go undiagnosed or misdiagnosed for years before getting the correct diagnosis. Prolonged treatment only makes matters worse. I was undiagnosed and misdiagnosed for years. This is a potentially life threatening disease. It almost took my life. Take care. I hope you’re doing ok. XXX

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