As a gastroparesis patient, I am constantly asked about my illness.
What is gastroparesis? How did you get it? And my all-time favourite…. HOW DO YOU LIVE?????
I get asked these questions on a weekly basis. Fortunately, I enjoy talking about it and helping teach others. Not many people have heard of gastroparesis, and it is difficult to find accurate information about it online.
There is very little scientific or academic research into the illness, and there are also not many personal accounts of it online. Gastroparesis is quite rare, and people may have wildly different severities of it. Very few people are ever diagnosed with the illness, for a wide variety of reasons.
I was diagnosed with gastroparesis in December 2022. To learn more about me and my journey, please check out my About Me page.
If you have any specific questions that you’d like me to cover, please let me know in the comments! Otherwise, keep reading for answers to my 10 most frequently asked questions about gastroparesis:
What is Gastroparesis?
To translate the medical term gastroparesis as literally as possible, the word can be split into two. Gastro, meaning stomach, and paresis, meaning paralyzed. Together, what gastroparesis means is paralyzed stomach.
Basically, it is a stomach disorder that slows or stops the movement of food from your stomach into your small intestine. It is also known as delayed gastric emptying.
What are the Symptoms?
Gastroparesis symptoms can be different for everyone. The primary symptoms are extreme nausea, vomiting, bloating, and feeling full after eating very small amounts.
When I first became ill, I completely stopped eating. I lost my appetite, and every time I ate, I immediately felt extremely full. I would throw up even after eating tiny amounts of food, and could feel the food I ate pooling at the top of my stomach. If I was able to eat anything, I would still feel full days later.
Who Gets Gastroparesis?
Anyone can get this illness. Sometimes, gastroparesis can be a complication of diabetes or surgery. Additionally, you can get it after a virus or infection.
Recently, gastroparesis has become more common. I, and many others, received diagnoses after getting COVID-19. Others have claimed they got gastroparesis from Wegovy, Ozempic, or other diabetes management and weight loss drugs.
Is Gastroparesis a Chronic Condition?
For most people, yes, it is a chronic condition. Unfortunately, it is impossible to say how long it will last. It could be days, weeks, months, or years. Some people will have gastroparesis for the rest of their lives. I’ve had it for 10 months, and will have it for the foreseeable future.
Is Gastroparesis Considered a Disability?
For those with severe gastroparesis, yes, it is a disability. Due to my illness, I have a feeding tube as I cannot get enough nutrition on my own. Using a feeding tube as a primary mean of nutrition is a disability. In addition, I have severe pain at the wound site, leading to a physical disability as well.
Is Gastroparesis Progressive?
Not necessarily. Many people with the illness will go through flares. There are times when they are completely okay, and times when they are very sick. Also, some people will only experience mild versions of the illness.
I got very sick immediately, and have very slowly begun to get better. I went from being able to eat or drink nothing at all, to being able to eat very small amounts of food throughout the day.
How Long Does It Take to Digest Food With Gastroparesis?
This answer is different for everyone. For me, it takes several days to digest food. When I first got sick, I would eat a meal and throw it up two days later. Others, with mild gastroparesis, may only take a few hours to digest food.
The test for gastroparesis involves eating a meal while doctors monitor how long it takes the food to pass through your stomach. Generally, this test is takes two or four hours. Doctors monitor the contents of your stomach at different intervals. They are measuring how much food is left in your stomach.
What is the Best Food For Gastroparesis?
What you can eat with gastroparesis will depend on the severity of your illness. At first, I couldn’t eat anything. Now, I can eat most things in small quantities. I still can’t eat things with a lot of fat, dairy, or that are spicy. Usually, the best foods for gastroparesis are those with low fat and low fiber.
The Minnesota Gastroenterology Clinic has created a whole proposed meal plan. For the most part, doctors recommend foods that are easy on your stomach, such as toast, plain pasta, and white rice.
What Doctors Specialize in Gastroparesis?
Gastroenterologists. You can ask your family doctor for a referral. They are the ones that can diagnose you and try to treat you.
What Treatments are Available?
Gastroparesis treatments are very limited. Gastroparesis has no cure.
There are some medications and experimental treatments available, but have limited success. None of them worked for me.
As I couldn’t eat, I had a nasojejunal (“NJ”) tube placed. An NJ tube is a feeding tube placed through your nose into your stomach.
Once we realized that I would need a feeding tube long-term, I had a percutaneous endoscopic jejunostomy (“PEG-J”) feeding tube surgically placed in my abdomen, directly into my jejunum, the second part of your small intestine. I receive my nutrition via formula, running the feeding tube overnight.
Rather than treating the illness, the feeding tube is in place solely to ensure I receive adequate nutrition while my stomach slowly heals itself. Feeding tubes are life-saving measures. This was a really overwhelming concept for me to grasp at first. Fortunately, the vast majority of those diagnosed with gastroparesis will not ever require these measures. They can get by eating smaller meals or going on a liquid diet.
Bonus Question: Is There Hope?
This is my favourite question. Because the answer is a resounding YES!
There is so much hope for people with gastroparesis. Firstly, most people with gastroparesis will never get this sick from it.
The vast majority of those with gastroparesis do not need a feeding tube. In fact, some people only have very short bouts of it. It may only last a few days, and you might not even know that you ever had it. Very few people develop serious cases, however, the number has been increasing over the past few years.
For those with really severe cases of gastroparesis, there is still hope! But I won’t lie, this illness is very difficult to adjust to. Losing the ability to eat means giving up a lot of things.
If you or someone you know may have gastroparesis, there is a lot of hope. I would love for you to reach out if you have any more questions about the illness or my experience. You can leave a comment below or privately message me here. I will try to help however I can!
Still have questions?
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