Cases of eosinophilic esophagitis (EoE), once considered rare, are becoming increasingly common. More than 470,000 people in the United States live with EoE, a chronic inflammatory disease of the esophagus that causes symptoms that can interfere with daily life.
A proactive approach to care can help you stay ahead of EoE and live your life without being defined by your illness.
Understanding EoE
EoE affects your esophagus, the tube that connects your mouth to your stomach. This happens when your immune system floods this tube with white blood cells in response to certain allergens, an abnormal reaction known as type 2 inflammation.
Over time, white blood cells called eosinophils build up in the lining of your esophagus, causing swelling that can lead to EoE symptoms.
In adults, difficulty swallowing, also known as dysphagia, is the most common symptom of EoE.
Other symptoms of EoE can include:
- Chest pain
- Food gets stuck in the throat after swallowing (impaction)
- After swallowing, food comes back up (burping)
- heartburn
- Stomach pain
These symptoms may be constant or come and go, but EoE is a lifelong chronic disease – and that means treating it is a lifelong commitment.
Taking steps to proactively manage your EoE, even if you don’t have symptoms, will help you better control the condition.
Why endoscopy is important
If you have EoE, your doctor probably used an endoscope to diagnose it. This long, thin tube with tools such as a light and camera is used to examine the lining of your esophagus. Tissue samples may also be taken that provide clues about your condition.
The name of the procedure in which your doctor uses an endoscope is called an endoscopy. To keep an eye on EoE, it’s important to have endoscopy regularly – even if you’re feeling well.
“To assess EoE, three areas need to be measured: symptoms, endoscopy (what the esophagus looks like) and histology (what the biopsy says),” said Evan Dellon, MD, director of the Center for Esophageal Diseases and Swallowing at the University of North Carolina School of Medicine. “This is because symptoms are not always a reliable indicator of how active EoE is.”
A patient may be doing well, but their esophagus may still show signs of EoE activity. Or a patient may have many symptoms even if the esophagus and biopsies look fairly good.
Dellon suggests that people with EoE have an endoscopy after any change in treatment, whether starting something new or tweaking their current approach.
“We also recommend having an endoscopy even when things are under control to ensure that treatments are still working. However, the time frame for this is determined individually based on a patient’s specific disease characteristics,” Dellon said.
Know the signs of EoE
In addition to having an endoscopy, you can keep track of your EoE by knowing how to tell if your treatment isn’t working.
“Usually if treatment works well, symptoms should eventually improve… and endoscopy and biopsies will also improve,” Dellon said.
“If [symptoms were previously improved]But now symptoms – for example sticky food or difficulty swallowing – are returning, then that is a sign that the treatment may not be working.”
Flexibility is key when it comes to EoE
Nothing stays the same in life, and that often includes your EoE treatment needs. The treatment that has always worked well for you may no longer work, or new treatment options may become available. Or you may decide to try a different treatment option and see what happens.
Life changes may also require a change in the way you manage your EoE. These can include:
- Economic or insurance changes
- Go to college
- Relocation
- pregnancy
- An unpredictable schedule
“For example, someone who is studying may not want or be able to go on a diet and decide to take a drug for EoE,” Dellon said. “But after graduation and when the job situation is more stable, the same person may want to try forgoing medication and trying diet as a treatment.”
Knowing that EoE—or life—can get you into trouble can help you cope when treatment changes become necessary.
Navigate EoE treatment with clear communication
As you navigate life with EoE, it’s important to make it clear to your care team what’s important to you. Communicating your treatment priorities can help your doctors and you put together a plan that meets your needs.
“A tenet of our current treatment approach to EoE is shared decision-making,” Dellon said. There are several safe and effective options for treating EoE. Which one is best for you depends mainly on your preferences and priorities. Figuring out which treatment is best for you requires good communication between you and your doctor.
“Health care providers must provide sufficient information about treatment options so that a discussion can occur and a patient can make a decision.”
It’s also important to understand that handling your EoE may involve trade-offs. For example, Dellon said patients may have to choose between using a drug that is inexpensive but also less effective and one that costs more but may work better.
Read: How shared decision making can lead to better healthcare >>
Stay on course
Although EoE is a lifelong chronic condition, it can be treated – as long as you continue to treat it.
“Although there is currently no cure, we have several safe and effective treatments,” Dellon said. “But they need to be taken for a longer period of time as we know that EoE flares up almost universally when treatment is stopped.”
This educational resource was created with support from Sanofi and Regeneron.
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