Gastroparesis Awareness Month
I had a dream once. The dream every Whovian dreams of dreaming. There was danger and mayhem and adventure afoot, and there I was, and there he was - the Doctor (Eleven, I think?) - and there we were in the middle of it all. Saving the day.
And once the day was saved, the Doctor had to go. As he always does. The spaceship he was going to escape on (because of course he'd lost his TARDIS...my brain knows DW plots well) was seconds away from departing, and he turned back to look at me. Offered his hand. Smiled.
Asking me to go with him.
It was a split-second decision. I wanted to say yes more than anything in the world. But instead I said no. Why? Because I didn't have my meds with me. Or my special food. Or the stomach for adventuring.
*sigh* Even in dreams I know my limitations.
August is the official Gastroparesis Awareness Month, and I want to do my part in
promoting awareness and understanding of this painful and debilitating stomach disorder.
What is gastroparesis?
The literal translation of gastroparesis is "paralyzed stomach." When someone has gastroparesis, their stomach muscles don't function like they should. I'll give you an example. Let's say we each ate a scrambled egg for breakfast, you and me. Your stomach, being a healthy, normal stomach (at least I dearly hope so!), will have digested your egg and sent it merrily on its way to the rest of your digestive tract in 30-90 minutes. My stomach? It takes 354 minutes to digest that same egg. And this causes a whole slew of unpleasant symptoms and health problems.
What are the symptoms of gastroparesis?
- Vomiting (sometimes undigested food hours after eating)
- Early satiety (feeling full after a few bites of food)
- Abdominal pain (like glass shards traveling through your intestines)
- Bloating, distended stomach
- Weight loss
- Loss of appetite
- Other digestive issues such as GERD
- Changes in blood sugar levels
What causes gastroparesis?
The four main causes of gastroparesis are:
- A side effect of certain medications
- Damage to the vagus nerve during surgery
- Idiopathic, which means the cause is a mystery (That's me! I'm the mysterious type. *swishes cape*)
How common is gastroparesis?
According to NORD (National Organization for Rare Diseases), gastroparesis is classified as a rare disease.
How do you treat gastroparesis?
There is no cure for gastroparesis and treatment options are limited, both in number and effectiveness. Drastic diet change is the first step (and oh, what a fun diet it is - say hello to baby food!), usually followed by anti-nausea medication and a form of motility drug that does its best to stimulate the muscles of the paralyzed stomach. Other patients have surgery to insert a gastric electric stimulator (GES), and still others must resort to feeding tubes.
Can you die from gastroparesis?
In severe cases, yes. Living with gastroparesis can be scary, especially during flare-ups. Watching the numbers fall on the scale with no power to stop it, wondering if your stomach will jolt into action again or if you'll have to be on a feeding tube, wondering if that will be enough...it's scary. Complications from gastroparesis include dangerous weight loss, vitamin deficiencies, malnutrition, dehydration, bacteria growth from undigested food lingering in the stomach, and bezoars, which can be life-threatening.
Does gastroparesis affect everyday life?
It affects every minute of everyday life. I want to be straightforward about the challenges people with gastroparesis face on a daily basis, because this is what Gastroparesis Awareness Month is all about. And this is the reality: I am nauseated every day of my life. It can cloud my judgement, my joy, and my ability to participate in even the most basic things. 95% of the time, I feel physically sick after eating - and I have to eat 6 times a day (no more than 1/3-1/2 cup of food per sitting if I want to keep it down) to maintain a weight that keeps my body alive. The list of symptoms I mentioned earlier are not rare occurrences with this disease. They are a normal and frequent part of our existence, and they strike whenever they choose. Outings, dates, public situations are all extremely stressful for people with gastroparesis, particularly after eating (which, keep in mind, is 6 times a day).
And it's not just the fear that symptoms will make a surprise appearance. No, it's the alienation that comes with this disease. Most of our society is centered around food, and when you can't participate in eating, others notice. They question. They judge. Feeling normal feels impossible when you can't do normal things.
Like our diets and our stomachs, quality of life is restricted with GP warriors. Some are able to work, some work from home, and others are on disability. Independence is a struggle for those with moderate to severe diagnoses. Women with gastroparesis may not be able to have safe and healthy pregnancies. Fatigue from malnutrition or managing symptoms is a very real side-effect that others might not understand. There is so much about this disease that others might not understand, and my hope is that this blog post will give you insight and increase your patience and compassion towards anyone struggling with health problems of any kind.
Thank you so much for taking the time to read this post. I can't wait to share my GP story with you one day. I may never have the stomach to be the Doctor's companion, but the life I'm living is filled with hope and the beauty of accepting challenges as plot twists that, by the hand of my own Author, are the very things that make my story the triumphant masterpiece it was written to be.