Whether you think you might have ulcerative colitis (UC), you’ve just been diagnosed, or you’ve lived with it for years, there’s 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 may start slowly with mild symptoms and gradually get worse. Most early signs are related to bowel movements and can involve frequent, bloody stools. The most common UC symptoms include:
- Bloody stool
- Urgent need to go to the bathroom
- Having to go to the bathroom more often
- Belly pain and cramps
You might also lose weight. Keep track of your symptoms, and let your doctor know how often you have them. They might suggest blood or stool tests, a colonoscopy, or other tests to make a diagnosis.
Finding the Right Medication Can Take Time
Ulcerative colitis is a chronic disease, so you’ll need to take medicine long-term in order to treat it. But finding the drug that works for you might take a while.
“People are unique in the severity and extent of their colitis, as well as what treatments work best for them,” Streett says.
Medicine is important to ease symptoms and to protect your colon from damage that can result from ongoing inflammation.
It’s understandable to worry about the risks of medications, but you should compare them to the known risks of chronic untreated UC. It can lead to scarring and a higher risk of colon cancer. “Effective treatment markedly lowers these risks,” Streett says.
Lifestyle Changes Are Key
In addition to taking your meds, you’ll 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, who’s also a spokesperson for the American Gastroenterological Association. Try to:
Don’t Skip Doctor Visits, Even if You Feel OK
Seeing your inflammatory bowel disease (IBD) care team regularly is key, even when you’re feeling well and symptom-free, Streett says. It’s a time to make sure you’re doing all you can to keep your UC in remission and your overall health as good as it can be.
Your doctor and other members of your health care team will make sure your medicines are working well and that you’re up to date on any vaccinations, exams, and tests you might need.
You Can Live a Normal Life
When you’re worried about urgent trips to the bathroom and diarrhea, you might think you’ll never feel OK again. But you can control flare-ups and you can feel better.
The goal for the treatment to find an effective therapy so UC doesn’t stand in the way of you reaching your life goals, Streett says. This requires a strong partnership between you and your IBD care team.
Ulcerative Colitis and Crohn’s Disease Aren’t the Same
Ulcerative colitis and Crohn’s disease have similar symptoms, and are both types of IBD. But they are different.
UC is more common than Crohn’s disease. It affects only the inner lining of your colon and rectum. Crohn’s can show up in any part of your GI tract or any part of the wall of the bowels. People with Crohn’s can have healthy areas of the intestine in between inflamed parts. But with UC, the whole intestine is inflamed.
You Didn’t Cause Your UC
Doctors used to think diet and stress triggered UC. Now they believe they can make it worse, but they don’t cause it to start. So don’t blame yourself.
We don’t yet understand why otherwise healthy people get ulcerative colitis, but exciting research is underway.
“Some people are more likely to get inflammation in the colon,” Streett says. “What the triggers are for setting off this inflammation is unclear, but we see UC rapidly rising in this generation in parts of the world where it had been rare.” As a result, she says, researchers are turning their attention to things in the environment that might be to blame.
Remission Is Possible
Remission can be hard to reach for people with more aggressive types of UC, but getting there remains an important goal, Streett says. There are two types of remission: clinical and endoscopic. Clinical remission is when you aren’t having symptoms. Endoscopic is when your colon has also healed.
“This is important because there are times when people feel better but there are areas of the colon that have not healed fully and need adjustment of therapy,” she says. That’s why you should never stop taking your medicine, even if you feel better. Doing so could trigger a flare-up and end your remission.
Don’t Handle This Alone
It can be overwhelming to face flare-ups, so be sure to have family or friends you can talk to when you don’t feel well. Or find a support group of other people who have UC.
Even if you aren’t outgoing, reaching out to get support is key. This is a sign of strength, because you’re actively taking care of yourself.
“Having a chronic disease adds a layer of difficulty and stress to life,” Streett says. Sharing what you’re going through gives people who care about you, and people who understand what you’re going through based on their own experiences, a chance to give you perspective and strength.