At age 9, Natalie Rosenthal began to have terrible stomach aches, fatigue, and diarrhea. He had dark circles under his eyes. Stopped growing or gaining weight.
“He had spasms every time he ate something,” says Rosenthal, now an adult. “At first, the pediatrician told my mom that she had a nervous stomach.” Medication to calm the muscle spasms didn’t help, so her mother pushed for another diagnosis.
“She was a real tiger mom,” says Rosenthal, who lives in Atlanta. “She kept taking me back to the doctor. He said that I was not a nervous girl and that I was not afraid or anxious about school or socializing. She said, ‘This is no psychological.'”
After a year, a gastroenterologist gave Rosenthal a colonoscopy that showed she had Crohn’s disease, not nerves. Symptoms of Crohn’s disease include stomach pain, fatigue, diarrhea, nausea, or vomiting, so doctors may mistake it for other conditions. Tests that show inflammation or its damage, such as injuries, can reveal the correct diagnosis.
Different people, different symptoms
Crohn’s disease is caused by a runaway immune system that causes inflammation in your gastrointestinal (GI) tract.
It is difficult for doctors to pin down the disease because it can affect different parts of the tract. That means not everyone has the same symptoms, says Edward V. Loftus, Jr., MD, a gastroenterologist at the Mayo Clinic in Rochester, MN.
“It is important to rule out other conditions, because the symptoms are not specific,” he says.
Stomach pain, diarrhea and fatigue could also mean you have irritable bowel syndrome (IBS) or celiac disease, says Loftus.
Mild swelling may not show up in blood tests. Your doctor might mistakenly think that you have anemia from low iron levels, not from low iron levels and the bleeding that can accompany Crohn’s disease. Infections like salmonella E. coli, and tuberculosis may also have symptoms similar to Crohn’s disease.
Treatments for these conditions are quite different, Loftus says, so it’s important to do definitive testing before starting, Loftus says.
You can help in the process
Talk about all of your current or past symptoms so your doctor can pinpoint Crohn’s clues, says Shamita Shah, MD, medical director of the inflammatory bowel disease program at Ochsner Health System in New Orleans.
She says some people have “a symptom, like blood in their stools, and they think, ‘Oh, that’s just hemorrhoids.’ It goes away and then comes back months or even years later.”
Don’t hide any symptoms from your doctor because you feel embarrassed or because you think it’s no big deal. And don’t wait until it gets unbearable either, says Shah. You will risk damaging your intestines or need stronger treatment.
“I’ve seen patients go into the hospital for appendicitis surgery, and then it turned out to be Crohn’s disease,” he says.
Get the right tests
Blood tests can show signs of inflammation, but your doctor will likely need to look inside your digestive tract to diagnose it, Shah says.
“Crohn’s disease can affect you anywhere from the mouth to the anus, so we need to look for signs of inflammation,” he says. These include skipped lesions or areas of inflamed tissue next to areas that appear normal.
These are the most common tests:
- Colonoscopy uses a small camera that is inserted into your anus through a long tube while you are sedated or asleep.
- Enterography is a type of scan that shows a cross section of your digestive system.
- Endoscopy can show lesions in your upper digestive tract.
If these tests still don’t confirm Crohn’s disease, your doctor may want to perform a wireless capsule endoscopy, Loftus says. You will swallow a pill with a small camera that allows your doctor to see your entire digestive tract.
Don’t ignore the symptoms
Crohn’s disease can affect children, teens, or young adults, Shah says. You may be tempted to treat your symptoms on your own, or even downplay them, but those are not good ideas.
Some young people are embarrassed to tell someone about this, or they think nothing is wrong, he says. “They don’t know what these symptoms mean, or they feel like it’s really no big deal.”
Years ago, Dana Hartline was diagnosed with ulcerative colitis, a disease that also causes pain and diarrhea. About a year after that, he found out that he actually had Crohn’s.
Everyone’s body and illness are different, says Hartline, who lives in Marietta, GA. Your doctor at the time was unwilling to listen to your concerns or questions. “I wasn’t experienced enough to know what to ask and I was in a lot of pain at the time,” he says.
If you think your diagnosis is wrong because you are not getting any relief from your treatments, say so.
Or find a doctor that’s right for you, says Hartline. “Diagnosis and treatment came easily when I had someone who was willing to spend time with me and who actively provided me with the history and education about the disease, what to expect, what is normal, and what could raise a red flag.”