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Questions to ask your doctor after an ulcerative colitis diagnosis

It's only natural to have questions.

Read full 8 Questions to Ask Your Doctor After an Ulcerative Colitis Diagnosis by Korin Miller.


It can be scary and confusing to struggle with symptoms like bloody diarrheafever, and fatigue. If you seek answers about potential causes and receive an ulcerative colitis diagnosis in return, that can be a lot to take in. You’re far from alone, though: More than 750,000 people in North America have ulcerative colitis, according to the U.S. National Library of Medicine.

After receiving an ulcerative colitis diagnosis, you’ll probably (and rightfully) have some questions about what exactly you’re dealing with and what it means for your life. Remember that there’s no such thing as a stupid or unnecessary question when it comes to your health—you deserve to have information that can help you find as much relief from this chronic condition as possible.

With that in mind, here are some questions it can be helpful to ask your doctor after receiving an ulcerative colitis diagnosis.

1. What exactly is ulcerative colitis?

In case you’re not familiar with ulcerative colitis before getting a diagnosis—and many people aren’t—it’s an inflammatory bowel disease, meaning it involves chronic inflammation of the gastrointestinal tract, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). This inflammation leads to irritation, swelling, and sores called ulcers on the inner lining of the large intestine.

Ulcerative colitis often starts gradually with symptoms becoming worse over time, the NIDDK says. What can make this progression more confusing is that many people with ulcerative colitis experience flares, or periods where they have symptoms, followed by periods of remission. So, pre-diagnosis, you might think your symptoms are just a passing illness once they begin to fade, only to be confused when they return again.

2. What type of ulcerative colitis do I have?

To add to the complexity of this condition, there are actually different types of ulcerative colitis categorized based on which part of the GI tract the disease impacts. These are the types to know, according to the Mayo Clinic:

  • Ulcerative proctitis: This is typically the mildest type of ulcerative colitis, which makes sense when you realize the inflammation in ulcerative proctitis is limited to the rectum, the chamber at the end of the colon that ends at the anus. Rectal bleeding may be the only symptom.
  • Proctosigmoiditis: With this type, inflammation involves the rectum and extends to the sigmoid colon, the lower end of the colon. Symptoms can include bloody diarrhea, abdominal cramps and pain, and trouble pooping even when it feels like you really need to go.
  • Left-sided colitis: Here, inflammation goes from the rectum up through the sigmoid and descending colon, which is (unsurprisingly) the left part of your colon. Symptoms can include bloody diarrhea, abdominal cramping and pain on your left side, and unintended weight loss.
  • Pancolitis: Pancolitis usually affects the entire colon and can lead to bloody diarrhea that may be severe, abdominal cramps and pain, fatigue, and significant weight loss.
  • Acute severe ulcerative colitis: This is a rare form of colitis that affects the entire colon. It causes severe pain, a lot of diarrhea, bleeding, fever, and difficulty eating.

3. What caused my disease?

The short answer: You didn’t, so please don’t blame yourself. The exact cause of ulcerative colitis isn’t known, but there are a few theories about what could cause the disease. One is an immune system malfunction, meaning that when your immune system tries to fend off a virus or bacteria, it reacts in an abnormal way by targeting the cells in your digestive tract too, the Mayo Clinic says.

Genetics may play a role as well. Ulcerative colitis is more common in people who have family members with the disease, the Mayo Clinic says. With that said, it’s not an overwhelmingly strong connection—most people with ulcerative colitis don’t have a family history of the disease. However, knowing that you have it can help put the symptoms of the disease on the radar of your loved ones just in case, Ashish Atreja, M.D., an associate professor of gastroenterology at the Icahn School of Medicine at Mount Sinai, tells SELF.

Keep in mind, though, that your loved ones should only be tested if they’re symptomatic, Megha Kothari, M.D., a hepatologist and gastroenterologist at NewYork-Presbyterian Medical Group Brooklyn, tells SELF. There’s no need for them to get preemptive testing just because you have the condition.

Also, while there aren’t definitive answers in terms of ulcerative colitis causes, some people have found that things like stress and various foods and drinks (such as spicy foods, caffeine, and alcohol) can make their symptoms worse, the Mayo Clinic says.

Posted on: September 1 2020

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