Do you often get stomach ulcers or gastritis? Do you suffer from persistent stomach ulcers that do not improve despite treatment? Do you also have diarrhea? Sometimes we think of these as normal things, but today we are going to talk about a rare condition that is hidden behind these, but can be a little serious. This is called Zollinger-Ellison Syndrome.
Simply put, what is Zollinger-Ellison Syndrome (ZES)?
Imagine that there is a switch in our stomach that controls the production of acid. A hormone called gastrin acts like that switch. Normally, when we eat, this hormone is released, causing the stomach to produce acid to help digest food. When the job is done, the acid production is controlled.
However, in people with Zollinger-Ellison Syndrome (ZES), a type of tumor called a gastrinoma develops in the body. These tumors most often develop in the pancreas or the upper part of the small intestine (duodenum). What these tumors do is produce too much of the hormone gastrin without any control. It's as if the switch is always 'on'.
When we have too much gastrin, our stomach starts to produce too much acid. This excess acid is what causes severe stomach ulcers (peptic ulcers) and chronic diarrhea.
About 60% of these gastrinomas can be cancerous , so it is very important to detect and treat them early.
What are the symptoms of this disease? How do we know?
Sometimes, ZES may not show any symptoms in the early stages. But when symptoms do appear, they can be a little more severe than regular gastritis. The severity of symptoms varies depending on the size and number of tumors in your body.
Let's explain this further in the table below.
| Symptom | A simple explanation |
|---|---|
| Severe stomach pain or bloating | This pain occurs when the walls of the stomach and intestines are damaged by excess stomach acid. |
| Chronic Diarrhea | When excess acid enters the intestines, it disrupts the function of the enzymes there, causing diarrhea and food not being digested properly. |
| Vomiting or passing blood in the stool | This is what can happen when bleeding from ulcers in the stomach. Vomiting can be black like coffee grounds or stools can be black like tar. |
| Oily, floating stools | When fat digestion is impaired due to excessive acid, undigested fat is excreted in the stool. |
| Frequent heartburn | This condition occurs due to excess stomach acid moving up into the esophagus (acid reflux). |
| Anorexia and weight loss | Constant pain and digestive difficulties can lead to a decrease in appetite and weight loss. |
| Fatigue and weakness | As stomach wounds slowly bleed, you may feel tired due to anemia. |
In some cases, if these tumors spread to the liver (metastasis) , they can also show symptoms of liver cancer. For example, there may be itching, yellowing of the eyes and skin (jaundice).
Why does something like this happen?
Most of the time, ZES occurs sporadically , meaning it just happens.
But about 25% of patients develop it with a genetic condition called MEN Type 1 (Multiple Endocrine Neoplasia Type 1) . Simply put, this is a rare condition that is passed down through generations. In this, there is a risk of tumors developing simultaneously in several of the hormone-producing glands in our body. ZES is just one part of it.
What tests are done to diagnose this?
If you have the symptoms mentioned above, your doctor will likely order several tests if they suspect you have ZES.
First tests
- Blood Tests: These check the level of the hormone gastrin in your blood. If you have ZES, this level will be abnormally high . This is called hypergastrinemia.
- Testing stomach acid levels: A tube is inserted through the nose into the stomach and a sample of the acid is taken. In ZES, this acid level is very high.
- Imaging Tests: A CT scan or MRI scan is performed to check for tumors in the pancreas or intestines.
Further tests if tumors are confirmed
Further tests are being done to determine exactly where these tumors are, their size, and whether they are cancerous or not.
- Endoscopy: A thin tube with a camera is inserted through the mouth to examine the stomach and upper part of the small intestine. This can help to see if there are any stomach ulcers.
- Endoscopic Ultrasound: This is a combination of endoscopy and ultrasound scan. It can detect even very small tumors in the pancreas.
- ERCP: This is also a specialized scan.
- Biopsy (Fine-needle aspiration): A very small piece of tissue is taken from the tumor and examined under a microscope to see if it contains cancer cells.
What are the treatments for this?
Treatment options depend on the severity of your symptoms and whether the lump is cancerous or not. There are three main treatment options.
| Treatment method | Description |
|---|---|
| Medication | The most commonly used medications are called proton pump inhibitors (PPIs) . These work by controlling the production of acid in the stomach. These medications may need to be taken for the rest of your life. |
| Surgery | If the tumor can be removed, surgery is recommended. The type of surgery varies depending on the location of the tumor (e.g., Pancreatectomy - removal of part of the pancreas, Duodenectomy - removal of part of the small intestine). |
| Cancer Therapy | If the tumors are cancerous and have spread to other parts of the body, treatments such as chemotherapy are given. This works to control the growth of cancer cells and reduce symptoms. |
What will my future be like with this situation?
This is a question that many people have. Your future depends on the type of cancer you have.
- Noncancerous tumors: These are not life-threatening, but you will need to continue taking medication to control stomach acid.
- Cancerous tumors: The situation is a little different here. If all the cancer cells in the body can be removed through surgery, the disease can be completely cured. Even then, you will need to continue to undergo medical tests to see if the disease comes back.
According to expert statistics, more than 90% of patients who have had all of their tumors surgically removed survive for 5-10 years. If surgery cannot remove all of the tumors, the 5-year survival rate is about 43%.
But keep this in mind: These statistics are just averages based on data from thousands of patients. Your individual situation may be much different. Therefore, the best person to know exactly what your condition is is your treating doctor.
How should I take care of myself?
If you are diagnosed with ZES, you will need to make some changes to your life.
- Take your medication correctly: It is essential to take acid-reducing medications (PPIs) at the right time, as prescribed by your doctor.
- Regular medical checkups: Especially if you have had cancerous tumors, you should go for follow-up checkups at regular intervals as directed by your doctor to see if the disease has recurred.
- Be aware of symptoms: If symptoms such as stomach pain and diarrhea recur after treatment, inform your doctor immediately .
It's normal to feel anxious and scared when you learn that you have a rare disease like this. You have many questions. Talk to your doctor openly about all of them. Listen carefully to your test results and treatment plans. They are ready and willing to help you.
Take-Home Message
- Zollinger-Ellison Syndrome (ZES) is a rare disease caused by tumors called gastrinomas that produce excess stomach acid.
- The main symptoms associated with this are frequent stomach ulcers that do not respond to treatment and prolonged diarrhea.
- These tumors may or may not be cancerous, so early detection is very important.
- This disease can be successfully controlled with the right medications, surgery, and, if necessary, cancer treatment.
- If you have these symptoms, do not panic and immediately consult a qualified doctor for advice.
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