Gastroparesis Awareness Month

Ever heard of gastroparesis? Me either, until mid-October 2020 when my GI doctor’s nurse called me and said, “Your test results show you have gastroparesis.” Finally! After over a year of experiencing major stomach issues I had an answer.

From September 2019 through the day of my diagnosis, I’d been dealing with almost constant stomach pain, discomfort, bloating, feeling icky after eating (like having a very annoying headache all day long only in my stomach), or the feeling of being overfull for hours on end which was way beyond the “Oh I ate too much Thanksgiving dinner” feeling we often get at the holidays. I began paying attention to what I was eating and how it made me feel. I could never link the horrible feelings to any single food. I tried an elimination diet and discovered nothing. I finally figured out when I ate a normal sized meal, I’d get the overfull feeling that would last for HOURS. In fact, I remember wondering why I was feeling so full after eating a normal sized meal. By the time I saw a GI doctor I’d been successfully treated for H. Pylori, but I was still having major stomach issues.  The GI doctor did a comprehensive set of tests which led to that fateful phone call from the nurse.

What exactly is gastroparesis? It is when the stomach is paralyzed. The movement of food from my stomach to the rest of my digestive tract is not happening as it should. The reason I feel full after eating a small amount of food or overfull for hours after eating a normal amount of food, is because the food I’ve eaten is still sitting in my stomach.  

Symptoms: People experience a wide range of symptoms with gastroparesis. I’ve put a check mark by the ones I regularly deal with. Since Sept. 2019, 90-95% of my days have involved having one or more of the symptoms listed below. On a scale of 1-10 (1 very little pain/10 horrible pain), most days are around a 4. The symptom is there and noticeable, but I can handle it. I try not to complain, but if you ever notice I’m more quiet than usual it’s because I’m not feeling well.

👉Nausea

Vomiting

👉Feeling full after eating a few bites

👉Stomach pain

👉Bloating

Acid reflux

👉Lack of appetite

Weight loss

Malnutrition

Little known disease: After much reading, I’ve come to realize this is an uncommon disease and many doctors, including GI doctors, haven’t dealt with it and have no answers for their patients.

Vagus nerve: In simple terms, it’s a nerve that runs from the brain to the abdomen. Part of its function is to stimulate peristalsis (contractions that move food through the digestive system). People with gastroparesis have damage to their vagus nerve.

Idiopathic: Definition – unknown cause. My case of gastroparesis is idiopathic. My doctor and I have no idea whatsoever why I suddenly developed gastroparesis.

No known cure: Gastroparesis has no known cure. Medications – there are a few, but the side effects can be bad. Many people develop these side effects, so meds are not a great option. Gastric pacemaker - electrical wires that go to the stomach and send impulses to stimulate the stomach after eating. Some people have success with these pacemakers, but they don’t appear to be a common treatment. Feeding tubes – used when a person cannot eat at all due to nausea or pain or when someone cannot keep any food down. Dietary changes – the most common form of treatment.

Chronic illness: A chronic illness is one that requires ongoing medical attention or limits activities of daily living or both. I now have an uncurable chronic illness. It will require ongoing medical attention and I have had to make significant changes not only in my diet, but in some of the activities in my daily life. I’m learning to live as stress free as possible because stress makes the symptoms worse. I still exercise and lift weights, but I’ve scaled back. My workouts are shorter and less intense. I try to relax more and I’m definitely making sure I get more sleep.

Flare: A period of time when a person with gastroparesis has significant symptoms which affect their daily life. I have flares that usually last 7-10 days. I have no idea when these flares will happen, what causes them, nor how long they will last. During flares, I do my best to get through my work day and then go home and go to bed.

Gastroparesis Diet: There is a set of dietary guidelines for gastroparesis. When I first looked at the guidelines I was shocked and realized my eating habits were about to change A LOT. The short list of “can eat” foods is: broths and non-cream based soups; fruit juices, bananas, canned peaches & pears, applesauce; potoatoes and carrots (both with no skins), beets, mushrooms, and summer squash; white bread, white rice, pasta, cream of wheat, low fat crackers; low fat or no fat dairy; eggs, 2 Tbps peanut butter, poutry, fish, and lean ground beef. I ate some of these foods, but I also ate a lot of fruits and vegetables which were now off limits. Anything with fiber is on the “no” list as it is too hard to digest. When I saw my doctor three months after my diagnosis I had been following the gastroparesis diet religiously. My symptoms were reduced by 90%; I still had daily symptoms, but they weren’t nearly as bad. He said I could start eating some of the foods on the “avoid these foods list with a trial and error approach. “If you eat it and it causes worse symptoms then you know to avoid that food.” I’ve discovered some “never eating those foods again in my life” foods. It’s not a fun process, but since I don’t want a bland diet the rest of my life I’m willing to use the “trial and error” approach.

Appetite change: The craziest thing is how much my appetite has changed since developing gastroparesis. The other day in class my students were asking questions during the “Interview a Teacher” activity. They are allowed to ask one personal question. One group asked, “What is your favorite food?” Two years ago, I would have said, “Watermelon.” Since developing gastroparesis, I rarely eat watermelon. It has a different taste and doesn’t even sound appetizing. My favorite candy used to be the holiday Reese’s Peanut Butter Cups. Those have zero appeal for me now. I can down some Milky Way Caramel candy bars though. My favorite foods now are fajita chicken/Mexican rice/queso combo, lo mein, chicken fried rice, and ice cream.

Things I have figured out:

1. How to handle a flare (constant/significant stomach pain): a) to ease the pain apply hard pressure to the upper left area of my stomach. I’ve figured out how to do this while lying in bed, b) do 2-3 days of liquid only diet consisting of ginger-ale, Body Armor drinks, and chicken broth then transition to soft foods for 2-3 days consisting of scrambled eggs, toast, canned chicken, and chicken and noodle or chicken and rice soup, ice cream, Icees, c. in the following days, slowly add in lunch meat, rice, noodles, etc.
2. As soon as I eat a solid form of ANY food (safe food or not) my stomach will react in some way within 30 minutes. Most of the time I experience an “icky” feeling stomach. I don’t really know how to describe this except my stomach just feels like it has something in it that shouldn’t be there and it feels “icky”.
3. I feel my absolute best when I have an iced or hot latte in the morning, and avoid all solid food until suppertime. On the days I do this my stomach feels normal until I eat supper. The downside to this is by day three I’m really tired and have no energy due to lack of food. Ah, the catch-22. Eat and feel icky, but have energy or don’t eat and feel good but have no energy.