10 Top Questions to Ask Your Doctor About Ulcerative Colitis

by Sheila M. Eldred Health Writer

A recent diagnosis of ulcerative colitis (UC) brings with it a load of Qs—that is, until you’re standing in the exam room and can’t remember a single one.

That’s why having a crib sheet of exactly what to ask your care team can help you sort out your thoughts and become your own best advocate. Gina Lin, M.D., a physician in the department of gastroenterology at Kaiser Permanente Santa Clarita, shares the top 10 questions you’ll want to broach right away.

Woman with digestive pain

What part of the digestive system is my UC affecting?

This is a biggie, because not everyone’s UC disturbs the same part of the gut.

“Ulcerative colitis can involve the rectum (proctitis), lower end of the colon and rectum (proctosigmoiditis), left colon (left-sided colitis), or entire colon (pancolitis),” Dr. Lin says.

Because UC can manifest differently from person to person (the National Institutes of Health has a helpful illustration), it’s helpful, on a basic level, to familiarize yourself with your digestive system and the functions of each organ. But more so, since various parts of the digestive system respond differently to each treatment and medication, the answer is essential for your doc to determine the best way to proceed.

Doctor listing treatment options to a patient

What treatment or medication do you recommend for my UC?

If you Google “ulcerative colitis treatments,” jillions of links will appear—links of various dubiousness (remember: Dr. Google doesn’t actually have an M.D.). Treatments are highly specific to the individual patient, so, again, what works for someone else may not be the right route for you. Your treatments could involve medications, specialized diets, steroid treatments, and sometimes surgery, according to the Crohn's and Colitis Foundation.

When will my UC symptoms subside?

Of course you want them gone, like, now — particularly when you’re in the thick of a flare and it feels like nothing will ever change. Some medications and treatments require more time than others to take effect. For example, with one type of Rx is called an immunomodulator, it may be several weeks to three months before it kicks in. While your care team can’t make the symptoms disappear any faster, at least knowing when you can expect to feel better provides some solace. It also alerts you to when you should recontact your doc if your symptoms still aren’t budging.

Woman standing on a scale

What are the possible side effects of my UC treatment?

Ignorance here certainly isn’t bliss, physically or mentally. Ask for detailed information about how various treatments and medications could influence how you feel. If you’re being treated with steroids, for instance, the side effects can include acne, mood swings, weight gain, and more, according to the National Institutes of Health. Understanding the risks and benefits of a particular treatment can help you and your doctor decide the best choice for you.

Man grocery shopping with his son in the dairy aisle.

Are there foods I should avoid with UC?

One of the most confusing (and, frankly, maddening) things about living with UC is navigating your diet — figuring out your trigger foods can be a long process of trial and error. To get started, your doc can give you a general idea of the types of foods you’ll probably want to avoid (for example, you might need to cut dairy and alcohol). Ask for printed or online resources that you can keep handy for grocery shopping and cooking. It’s also a good idea to keep track of your symptoms after meals so you can start to identify patterns; here’s how to put together your own food diary.

Man waking up with digestive pain

What UC symptoms should I be concerned about?

Find out which symptoms or reactions are expected and which symptoms require medical attention. You can avoid unnecessary worry by understanding what to take in stride — and when it’s time to call your doctor.

Woman doing yoga at home

What other lifestyle changes should I make for UC?

In addition to dietary alterations, other lifestyle tweaks may alleviate your symptoms. For example, your GI may recommend you get more exercise — working out can help your body combat inflammation. Also, people with UC are at a greater risk of issues like depression and anxiety, and exercise can soothe those, too. You may also consider starting therapy, which can help you process the complex emotions of living with a chronic disease.

Doctor holding an endoscope for a colonoscopy

How often should I see a doctor for follow-up care like colonoscopies?

As you may have guessed, those with UC will need more frequent colonoscopies (a screening test that looks at the walls of your colon for cancer or polyps) than the average person, says Dr. Lin. A healthy adult should get a colonoscopy every 10 years starting at age 50, according to the Centers for Disease Control and Prevention, But if you’ve had UC for at least eight years, you’ll need a colonoscopy every one to two years to screen for colorectal cancer.

Ask your doctor about how often you should receive other follow-up care, including blood work. This schedule will morph over time as your condition changes — for example, if you’re in remission, you’ll likely need less frequent doctor’s visits.

Doctor and patient discussion

Do I need to worry about serious health complications from UC?

Early recognition — and prompt treatment — are key to avoiding the worst complications of UC, according to the Crohn’s and Colitis Foundation, so it’s important to know up front what the possibilities are. Two of the more serious — but rare — complications include toxic megacolon, a life-threatening condition that requires immediate attention, and a rupture of your bowel.

One of the other main concerns? “People with ulcerative colitis have an increased risk of colorectal cancer,” Dr. Lin says.

That cancer risk increases starting around the eight-year mark with UC (that’s why colonoscopy frequency starts to increase around this time, too). Your risk also hinges on the severity of your colon inflammation, your family history of colorectal cancer, and whether you have signs of cell changes in the colon or rectum, per the Crohn’s and Colitis Foundation.

Surgical team during an operation

When is surgery needed for UC?

The thought of surgery can be scary, but it can be a highly effective treatment for UC if you have serious complications or your meds just aren’t cutting it. About 20 percent of UC patients get surgery during their illness, according to the Crohn’s and Colitis Foundation.

Some types of surgery for UC include:

  • Strictureplasty: If you get a stricture, or a thickening of your intestinal wall due to UC, surgery can widen the area to stop it from getting worse and preventing you from pooping.
  • Intestinal resection: Sometimes, part of your intestine becomes too damaged from UC to function; in this procedure, that section is removed and the two healthy ends are joined back together.
  • Colectomy: Your colon (large intestine) may need to be completely removed, with your small intestine connected to your rectum so you can still poop. Some people call this a “cure” for UC, but that’s controversial among some patients. While the colon removal can provide a huge amount of relief, the other parts of your digestive system may still flare.
Sheila M. Eldred
Meet Our Writer
Sheila M. Eldred

Sheila Mulrooney Eldred is a graduate of Columbia’s School of Journalism and a former newspaper reporter. As a freelance health journalist, she writes about everything from life-threatening diseases to elite athletes. Her stories have appeared in The New York Times, Nature, FiveThirtyEight, Pacific Standard, STAT News, and other publications. In her spare time, she and her family love running, cross-country skiing, and mountain biking in Minneapolis.