When Eating Isn't Easy: Navigating Life With Gastroparesis

Have you ever counted the number of times you chew before swallowing food? Or you may have encountered the unsettling sensation of sipping on broth, only to be met with instant pain and nausea. These seemingly mundane experiences take a sharp twist when living with gastroparesis, a condition that revolves around delayed gastric emptying.

What Is Gastroparesis?

Gastroparesis literally translates to “stomach paralysis,” a condition where your stomach muscles slow down or stop functioning as they should. This digestive glitch results in food not moving efficiently through your stomach and into your intestines. So, even after you’ve enjoyed a delicious meal, your stomach might hold onto it longer than it should, leading to an array of not-so-pleasant symptoms.

Mighty Editorial & Community Associate Skye Gailing, who lives with gastroparesis, recently shared her intimate perspective. She poignantly describes, “Have you ever drank broth only to be met with immediate pain and nausea? Have you ever had to sleep sitting up so you didn’t wake up in the middle of the night to vomit bile? Have you ever gone a month without a bowel movement?” These visceral descriptions show the reality of living with gastroparesis.

Suppose you’ve experienced relentless nausea, unexpected vomiting, bloating that makes you feel like a balloon, or that too-full feeling even after a few bites of food. In that case, you might have brushed shoulders with gastroparesis. It’s like your body’s internal orchestra is playing out of tune — causing discomfort, disruption, and sometimes even distress.

What Causes Gastroparesis?

The exact cause of gastroparesis remains unknown due to its complex and multifaceted nature. Cause and triggers can vary from person to person, as with several other chronic conditions. Some of the commonly known contributors include:

• Diabetes: This is the most common cause of gastroparesis. High blood sugar levels can damage the nerves that control the stomach muscles, leading to impaired motility and delayed emptying.
• Post-surgical: It can develop as a complication of certain surgeries, especially those involving the stomach or upper digestive tract.
• Neurological disorders: Conditions that affect the nervous system, such as Parkinson’s disease, multiple sclerosis, and certain neuropathies, can lead to gastroparesis by affecting the nerves that control stomach motility.
• Viral infections: Certain viral infections, particularly those affecting the nerves, can damage the nerves that regulate stomach function.
• Medications: Some medications, such as certain opioids and some anti-cholinergic drugs, can slow down the contractions of the stomach muscles and contribute to this condition.
• Autoimmune disorders: Autoimmune diseases like scleroderma can affect the muscles and tissues of the stomach, leading to reduced motility.
• Hormonal disorders: Conditions like hypothyroidism (underactive thyroid) can affect the metabolism and function of various organs, including the stomach.
• Anorexia nervosa: Severe malnutrition and eating disorders can affect the function of the gastrointestinal tract, including the stomach.
• Connective tissue disorders: Conditions like Ehlers-Danlos syndrome, as in Skye’s case, can affect the connective tissues and lead to problems with gastrointestinal motility.
• Certain cancers: Some cancers, such as stomach cancer, can indirectly affect stomach motility.
• Idiopathic: In some cases, the exact cause of gastroparesis cannot be determined. The medical community uses the fancy term “idiopathic” as a substitute for “we don’t know.”

This is a complex condition. Even if the cause is known, its management may involve a combination of strategies, including dietary changes, medication, lifestyle adjustments, and sometimes medical procedures.

Why Is It Hard to Get a Gastroparesis Diagnosis?

Getting a timely and accurate diagnosis of gastroparesis can be challenging for several reasons, mainly stemming from a lack of awareness and the complexity of the condition.

Skye illustrates this experience by noting:

“Like so many others with this condition and its comorbidities, my symptoms were dismissed, and I was treated as “hysterical.” Even after undergoing a gastric emptying study that proved, without a doubt, that I had gastroparesis, it took two more years and switching to a new gastroenterologist to have my symptoms taken seriously.”

Here are some contributing factors to delayed diagnosis:

Non-Specific Symptoms

The symptoms, such as nausea, vomiting, bloating, and abdominal pain, are non-specific and can mimic other digestive disorders. This often leads to misdiagnoses or delayed diagnoses as doctors explore various possibilities before considering gastroparesis.

Overlap With Other Conditions

Gastroparesis shares symptoms with irritable bowel syndrome (IBS), acid reflux, and other gastrointestinal disorders. This overlap can confuse patients and health care providers, making it difficult to pinpoint the specific cause of the symptoms.

Lack of Awareness Among Medical Professionals

This is considered a rare condition, meaning many medical professionals may have yet to encounter it frequently. This lack of familiarity can lead to missed diagnoses or a longer diagnostic journey.

Diagnostic Tests and Procedures

The gold standard for diagnosing gastroparesis is a gastric emptying study, where the patient consumes a meal containing a small amount of radioactive material, and its movement through the stomach is tracked using imaging techniques. However, access to these specialized tests may be limited, causing delays in diagnosis.

Variable Symptoms

Gastroparesis symptoms can vary in severity and frequency, leading to difficulty in capturing a clear picture of the condition during medical evaluations. This variability can make it challenging to diagnose, especially if the patient’s symptoms are not consistently present during medical visits.

Delayed Seeking of Medical Help

Many people with this condition might initially attribute their symptoms to temporary issues like indigestion or stress. As a result, they might delay seeking medical attention, allowing the condition to worsen over time.

Misinterpretation as Psychological

Patients with gastroparesis might sometimes be incorrectly diagnosed with psychological disorders due to the overlap of symptoms with anxiety and stress-related conditions. This can prolong the diagnostic process and delay appropriate treatment.

Limited Treatment Options

Since there is no cure for gastroparesis, treatment mainly focuses on symptom management and improving quality of life. This limited treatment landscape can lead to frustration among patients and healthcare providers, further complicating the diagnostic process.

Personalized Symptoms

Gastroparesis symptoms can manifest differently in each individual, making it challenging to generalize diagnostic criteria. This individualized aspect of the condition can make establishing a clear set of diagnostic guidelines difficult.

The symptoms and severity of gastroparesis can change over time, and triggers may evolve or vary among individuals. This dynamic nature makes it difficult to pinpoint a singular cause that remains constant across different stages of the condition.

Everyday Impact of Gastroparesis

Imagine waking up to a world where your stomach has a mind of its own, and every meal feels like a delicate negotiation — that’s the reality for many individuals dealing with this condition. The symptoms and challenges associated with the disease can influence various aspects of their physical, emotional, and social well-being. Here are some of the everyday impacts of living with gastroparesis:

Dietary Restrictions

You often have to modify your diet significantly. You may need to avoid high-fat, high-fiber, and hard-to-digest foods. Meals are usually smaller and spaced out throughout the day to manage symptoms. This can lead to a restricted and carefully planned diet. Skye’s candid perspective on the disconnect between outsider advice and the reality of the condition’s complexities is striking. She debunks the myth that “consuming extra fiber is not good for people with gastroparesis,” highlighting the need for individualized care that considers the intricacies of the condition.

Symptom Management

Nausea, vomiting, abdominal pain, and bloating are constant companions for many people with this condition. Managing these symptoms daily can be physically and emotionally draining, affecting your overall quality of life.

Mealtime Anxiety

The uncertainty of how your stomach will react after eating can cause mealtime anxiety. You may worry about triggering symptoms in social settings or public places, impacting your ability to enjoy meals with others.

Nutritional Challenges

Gastroparesis can lead to malnutrition and weight loss due to inadequate nutrient absorption. This can result in weakness, fatigue, and other health complications that affect daily functioning.

Impact on Work and Productivity

The unpredictable nature of symptoms can affect your ability to work consistently. Frequent hospitalizations, doctor’s appointments, and days off due to symptom flare-ups can impact your productivity and career prospects.

Emotional Strain

Coping with chronic symptoms, pain, and the uncertainty of the condition can take a toll on mental and emotional well-being. Anxiety, depression, frustration, and stress are common among people with gastroparesis. The condition also changes your body in ways that might not be immediately visible to others but profoundly impact how you see yourself. Weight fluctuations, bloating, and self-consciousness about appearance become unwelcome companions. It’s like looking in the mirror and not recognizing the reflection staring back at you.

Impact on Relationships 

Family members, friends, and partners might struggle to understand your limitations and could inadvertently place expectations on you that don’t align with your health needs. This can lead to frustration, miscommunication, and feelings of being misunderstood.

Social Isolation 

Gastroparesis can lead to unpredictable symptoms like nausea, vomiting, and discomfort, which might make you hesitant to participate in social events or gatherings. The fear of symptoms occurring in public settings can result in social isolation, as you might opt to stay home to avoid potential embarrassment or discomfort.

Financial Burden

The cost of medical appointments, tests, medications, and dietary adjustments can add up quickly. People with gastroparesis may face economic challenges due to these ongoing expenses.

Physical Limitations

Symptoms like fatigue and weakness can make daily activities like household chores, exercise, and errands more challenging.

Medication Regimens

Managing a complex medication regimen to control symptoms and aid digestion can be time-consuming and require careful planning.

Treatment Adjustments

Treatment plans for gastroparesis often need adjustments as symptoms change. Constantly monitoring and modifying treatment can be demanding and time-consuming.

Impact on Sleep

Nausea, pain, and discomfort can disrupt sleep patterns, leading to insomnia or poor-quality sleep.

Despite the isolation accompanying gastroparesis, you are not alone in your journey and we hope you can take comfort in knowing that there are others who navigate similar challenges. This realization serves as a reminder that stories of fellow warriors can inspire courage and strength.

Understanding the multifaceted nature of gastroparesis is not just a matter of medical knowledge; it’s an exercise in empathy. The journey from seeking a diagnosis to managing symptoms requires medical intervention and a strong support system that acknowledges the complexities of the condition.

By shedding light on these everyday struggles, we can bridge the gap between the known and the unknown, between those who live with gastroparesis and those who don’t. Sharing our gastroparesis stories invites us to empathize, recognize the invisible battles fought each day, and cultivate a space of understanding and support for those navigating the intricate terrain of gastroparesis.