August Is Gastroparesis Awareness Month

August is Gastroparesis awareness month. This is a condition that I personally don’t suffer from, but that a close friend does, as a direct result of her Ehlers-Danlos Syndrome. I thought that, instead of me sharing some information with you all, it would be better for her to tell you, in her own words, what living with this debilitation condition is like.

“Gastroparesis (gastro-,”stomach” + -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. Normally, the stomach contracts to move food down into the small intestine for additional digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not properly function. Food then moves slowly or stops moving through the digestive tract…

Through my teenage years I suffered from an eating disorder called anorexia. Over the last few years my sickness returned and I began struggling to eat with out bloating, pain and heartburn. At the back of my mind I knew my anorexia wasn’t returning but still I had some doubts. I kept being told “we’ve done tests on your tummy and it’s fine” so I began to think it was in my head. Most days I vomit undigested food even 24 hours after eating. After going through many consultants in all different fields I was eventually referred to the Royal London Hospital and an appointment was made for my to see a top professor. I was worried that he would say nothing’s wrong with me but I went along with a food diary I kept for a month, and the symptoms I had… He said he thought I have a condition called gastroparesis. Sadly there is no cure for this and it will get worse over the years. I take a lot of medication to help with the vomiting, nausea, pain, acid reduction, and tablets to speed my gut up. I also have to inject myself to help with my sickness. In total I take 50+ tablets everyday.

I have many hospital admissions which in turn lead to depression and I had many a dark day and wanted to give up, curl up and not wake again. When I’m in hospital with this condition, I become so dehydrated and my veins have no packed up so I end up with a central line in my neck or groin. These come with major health warnings due to infections. I’m then on drips, potassium, magnesium, anti sickness and my most recent admission I was fitted with a temporary feeding tube which went up my nose and into my bowel. This was done because I was becoming malnourished. I hated it. I no longer have it but I’m waiting to her if I am to have a permanent tube fitted into my bowel which will my life changing in more ways than one.

In time I began to accept this condition and my dark days get less and less. I still have them but not as bad as I used to. This condition has taken my life away from me. I was happy at university studying to be a nurse which was my dream job, but due to the EDS and autonomic dysfunction, that can cause my heart to beat at 220, I had to give up and now I’m classed as disabled, which I hate. I have to use a wheelchair if I am out for some time otherwise I have to use my crutches.

You may look at me and think “there is nothing wrong with her, she has two working arms and two working legs, she is not in a vegetive coma so therefore she is faking it” but I can tell you different…

If you pass me in the street and I have fallen over due to my heart rate or dehydration please don’t cross the road to avoid me or suffocate me with niceness, just treat me like a normal human being. If I’m on the floor and wearing a skirt and my butt is flashing, please pull my skirt down because my wobbly butt is not a nice sight. Treat me normally because that is what I am. I am the same as you all but I just have a few added problems that you will never see.

So in future if you see someone and think there is nothing wrong with them, please remember this post and remember not all illness is visible…”

Many thanks to H for sharing her story of gastroparesis with us.

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