August 18, 2023 – Elizabeth Svoboda was just 15 years old when she suddenly developed a nagging abdominal pain so severe that she needed to lie within the fetal position for hours until the pain subsided. Every few weeks and over the following twenty years, the sensation returned, leaving her disabled.
“I've experienced labor and would say my pain at its worst was comparable to that,” said Svoboda, now 42, of California.
It wasn't until college that she went to a physician together with her pain, who eventually, without doing any tests or imaging, attributed it to irritable bowel syndrome: an intestinal disorder that causes abdominal pain, bloating, diarrhea and constipation.
“At that point, I kind of threw my hands up in the air and said, 'Nobody's going to be able to figure this out,'” Svoboda said. “I just accepted that this is my normal state of being.”
She didn’t know that it might take nearly 20 years of pain before she discovered what was bothering her: chronic appendicitisAlthough there is no such thing as a official definition, an individual is taken into account to have this condition when their appendix, that finger-like pouch at the tip of the massive intestine, becomes inflamed and causes periodic abdominal pain which will last for weeks, months, or years.
Chronic appendicitis is currently estimated to be rare. Studies have shown that it occurs in about 1% of all cases of appendicitisand affects adults and Children even.
appendicitis is nearly all the time acute, meaning it occurs suddenly and worsens quickly, requiring emergency surgery to remove the organ. It occurs in 7% of the US populationwith 250,000 cases reported every year; most are diagnosed in people between the ages of 10 and 30, but anyone can get it.
Both the chronic and acute types of the disease cause similar symptoms: pain that begins across the navel and eventually spreads to the lower right abdomen, in addition to nausea, vomiting, fever and lack of appetite.
The essential difference between the 2 is the timing, said Reezwana ChowdhuryMD, a gastroenterologist and assistant professor of drugs at Johns Hopkins Medicine in Baltimore. Acute appendicitis often occurs inside 24 to 48 hours, while chronic appendicitis may occur in bouts lasting several hours and recur randomly for not less than every week, but often longer.
Because individuals with chronic appendicitis have pain that comes and goes and is frequently not severe enough to require hospitalization, Chowdhury says the disease is commonly misdiagnosed for a lot of other conditions, including irritable bowel syndrome, gastroenteritis, Crohn's disease or an infectious disease. CT scans And White blood cell countwhich are sometimes elevated in patients with acute appendicitis, may also turn out to be normal, making it even tougher to detect chronic cases.
Experts don't know what causes chronic appendicitis, but just like acute cases, it is assumed to occur when the appendix becomes partially or completely blocked by hardened stool balls, inflammation on account of infection or other intestinal diseases, or cancerous tumors, said Cherise BerryMD, chief of the Division of Acute Care Surgery at NYU Langone Health in New York City.
Appendicitis happens randomly, she said, so there are not any clear risk aspects that would make one person more at risk of it than one other.
These unknowns, researchers say, make it difficult to know whether chronic appendicitis is the results of untreated acute appendicitis or whether it's a a completely different disease.
As rare because the cases could also be, chronic appendicitis has gained importance within the medical community as a growing variety of case reports on the disease are published in scientific journals. first was reported in 1949.
However, the diagnosis of this disease is controversial. Many doctors have never treated a case themselves and a few are unaware that it's an actual medical phenomenon.
“I have never seen a case of chronic appendicitis and unfortunately I don't know how often it comes up in the differential diagnosis for many of our patients,” Chowdhury said. “The problem is that there are no official diagnostic criteria and it is usually a diagnosis of exclusion,” meaning doctors diagnose the disease by strategy of exclusion.
Svoboda never received an official diagnosis. Shortly before Christmas 2012, she was hospitalized on account of unbearable pain, where a CT scan revealed that she had acute appendicitis and her appendix was immediately removed. It was only after extensive research and discussions together with her father, who's a physician, that Svoboda realized that it was more than likely a chronic condition.
“If I had had a doctor who knew to look for chronic appendicitis, he might have been able to detect it earlier and certainly could have changed the course of my life in the more than 15 years that I had this pain,” said Svoboda, who has been pain-free since her surgery. “That's why it's so important to me to raise awareness about this issue. If it could save people years of the pain that I had, I think that would be a huge success.”
Longer misdiagnoses have consequences
Chronic appendicitis will not be considered an emergency, but it may turn into one whether it is left undiagnosed or misdiagnosed.
A untreated appendix can eventually burstThe longer you wait to have the organ surgically removed, the greater the chance of swelling of the abdominal wall (peritonitis) or a set of pus (abscess), which might result in infection within the body.
In rarer cases, appendicitis can mask appendix cancer, which is why most doctors recommend surgery slightly than antibiotic treatment for his or her patients, Berry said. CT scans don't all the time detect appendix cancer, especially if it's low-grade. In many cases, it may only be detected by laboratory tests on the appendix after it's been removed.
It is believed that appendix cancer one to two people per 1 million per yearin response to the National Cancer Institute, but studies show that it's becoming more common, especially in people under 50.
Otherwise, the results of a late or incorrect diagnosis are weeks, months or years of unnecessary pain. The excellent news: Studies have shown that surgical removal of the appendix offers relief to most people in a chronic case.
Steven Teleky can attest to this. The 28-year-old San Francisco Bay Area resident felt sharp pains around his belly button during a baseball game in April. The pain went away over time, so he thought lack of sleep was the cause. The following month, Teleky went on vacation to Portugal together with his family, and the severe pain returned.
“With every right step, boomterrible stabbing pain in my belly button,” he said. “Again, I attributed it to fear of the brand new place, or possibly even a hernia, and ignored it.”
One month after returning home, the pain in his right lower abdomen returned, this time causing extreme swelling in the pelvic area and daily nausea that robbed him of his appetite.
Last week, Teleky went to the hospital. Although he was not in severe pain at the time, the physician's assistant in charge of his treatment insisted on having Teleky undergo a CT scan. This revealed moderate inflammation of his appendix. Appendicitis was quickly diagnosed and his appendix was successfully removed.
At a follow-up appointment, his surgeon confirmed that he was suffering from chronic appendicitis and is now on the road to recovery.
“I'm very grateful that the physician's assistant who examined me pushed for scans despite the fact that I used to be within the emergency room with no real pain. Who knows what would have happened if she hadn't insisted on ruling out the worst-case scenario,” Teleky said. “She really saved me plenty of headaches – and possibly saved my life, too.”