Whether you think you have ulcerative colitis (UC), have just been diagnosed, or have lived with it for years, there is a lot to learn about this condition. We spoke with Sarah Streett, MD, clinical director of inflammatory bowel disease at Stanford University, to find out what a doctor who treats this disease every day wants you to know.
Track your symptoms if you think you have UC
Ulcerative colitis can start slowly with mild symptoms and gradually get worse. Most of the early signs are related to stool and may involve frequent, bloody bowel movements. The most common symptoms of UC include:
- Bloody stools
- Urgent need to go to the bathroom
- Having to go to the bathroom more often
- Stomach pain and cramps
You could also lose weight. Keep track of your symptoms and let your doctor know how often you have them. They may suggest blood or stool tests, colonoscopy, or other tests to make a diagnosis.
Finding the right medicine can take time
Ulcerative colitis is a chronic condition, so you will need to take long-term medication to treat it. But finding the right medication for you can take some time.
“People are unique in the severity and extent of their colitis, as well as in the treatments that work best for them,” Streett says.
Medicine is important for relieving symptoms and for protecting your colon from damage that can result from continued inflammation.
It’s understandable to worry about the risks of drugs, but you need to weigh them against the known risks of untreated chronic UC. This can lead to scarring and a higher risk of colon cancer. “Effective treatment significantly reduces these risks,” says Streett.
Lifestyle changes are essential
In addition to taking your medication, you will also need to make simple changes to your daily habits.
“Taking care of yourself as a whole person, mind and body, is essential,” says Streett, also a spokesperson for the American Gastroenterological Association. Try:
Do not skip doctor visits, even if you feel well
Seeing your inflammatory bowel disease (IBD) care team regularly is essential, even when you’re feeling well and symptom-free, says Streett. Now is the time to make sure that you are doing all you can to keep your UC in remission and your overall health as good as possible.
Your doctor and other members of your healthcare team will make sure that your medications are working well and that you are up to date for any vaccinations, exams, and tests that you may need.
You can live a normal life
When you worry about urgent trips to the bathroom and diarrhea, you might think you’ll never feel well again. But you can control the flare-ups and you will feel better.
The goal of treatment is to find effective therapy so that UC doesn’t keep you from reaching your life goals, Streett says. It requires a strong partnership between you and your IBD care team.
Ulcerative colitis and Crohn’s disease are not the same
Ulcerative colitis and Crohn’s disease have similar symptoms and are two types of IBD. But they are different.
UC is more common than Crohn’s disease. It only affects the inner lining of your colon and rectum. Crohn’s disease can appear in any part of your digestive tract or any part of the lining of the intestines. People with Crohn’s disease may have healthy areas of the bowel between the inflamed parts. But with UC, the whole intestine is inflamed.
You did not cause your UC
Doctors used to think that diet and stress triggered UC. Now they believe they can make it worse, but they don’t get it started. So don’t blame yourself.
We don’t yet understand why otherwise healthy people get ulcerative colitis, but exciting research is ongoing.
“Some people are more likely to have inflammation of the colon,” says Streett. “The triggers for this inflammation are unclear, but we are seeing a rapid increase in UC during this generation in areas of the world where it was rare.” As a result, she says, researchers are turning to items in the environment that might be to blame.
Remission is possible
Remission can be difficult for people with more aggressive types of UC, but achieving it is still an important goal, Streett says. There are two types of remission: clinical and endoscopic. Clinical remission occurs when you do not have symptoms. Endoscopy is when your colon has healed as well.
“It’s important because there are times when people feel better, but there are areas of the colon that haven’t fully healed and need therapy adjustment,” she says. Therefore, you should never stop taking your medicine, even if you feel better. This could trigger a flare-up and end your remission.
Don’t handle this alone
Dealing with flare-ups can be overwhelming, so make sure you have family or friends to talk to when you’re not feeling well. Or find a support group of other people with UC.
Even if you are not an extrovert, seeking help is essential. It is a sign of strength because you are actively taking care of yourself.
“Having a chronic illness adds a layer of difficulty and stress to life,” says Streett. Sharing what you are going through gives people who care about you, and people who understand what you are going through based on their own experiences, a chance to give you perspective and strength.