UC: How to Advocate for Yourself

5 min read

If you have ulcerative colitis, one of the best ways to stay healthy and keep your disease under control is by taking charge of your own care. This means becoming an expert in yourself -- your condition, your health, your needs -- and working with doctors and a care team that treat you as a partner.

“It’s very valuable when you can engage in shared decision-making, understanding the risks and benefits of therapy with your providers,” says Sushila Dalal, MD, a gastroenterologist at the University of Chicago who specializes in inflammatory bowel disease (IBD).

So how do you do that?

You don’t have to go to medical school and become a gastroenterologist, but spending a few hours learning everything you can about UC can help. Find out what causes it, how it’s treated, how your diet may change, and so on. This will help you understand what you’re going through and help you take control of your future.

“Look for information that is vetted by experts in the field,” Dalal says. A great place to start is the Crohn’s and Colitis Foundation of America. The organization offers a wide range of educational resources, including a jam-packed video called Ulcerative Colitis 101.

“You can also find educational information from major medical centers with IBD programs,” Dalal says. Top hospitals like the Mayo Clinic and the Cleveland Clinic have online information about UC. So do the American Society for Gastrointestinal Endoscopy and the Canadian Society of Intestinal Research.

In addition, the Jennifer Jaff Careline, at 844-244-1312, offers case management for people with UC and other forms of inflammatory bowel disease (IBD). Folks there can help you with financial challenges, like enrollment in Medicare and Medicaid and appealing coverage denials from your insurance company.

UC is a chronic condition, meaning that you’re going to have it for a long time -- probably the rest of your life. You want to form a good and lasting partnership with a care team you feel comfortable with. Your primary care doctor can refer you to a gastroenterologist or IBD program, but you can also get referrals from friends (you may be surprised at how many people you know have a GI condition or know someone who does), online support groups, or through the Crohn’s and Colitis Foundation database.

Good partners for your UC journey can include more than just your care team. Look for guidance from other people with UC. You can find them through in-person or online support groups.

“We often pair patients up with a mentor, someone else who has gone through the same surgery or undergone a similar course of treatment,” Dalal says. “They can provide a different perspective than a provider can. This is a very good resource, especially when you’re faced with a big decision like undergoing surgery.”

Ask about support groups or mentor programs at your hospital, or find local support through the Crohn’s and Colitis Foundation.

Having a chronic condition means there’s a lot of information to keep track of, from symptoms and medications to side effects and doctor appointments. But keeping it organized can help.

How you do that is totally up to you, says gastroenterologist Karen Chachu, MD, PhD, an assistant professor of medicine at Duke University School of Medicine. “It doesn’t have to be fancy. But it is very helpful to your care team if you keep a folder, a notebook, a calendar, or a box of information about your disease and your treatment, especially if for some reason you’re seeing a new doctor.”

During or right after every visit, make notes about the decisions you and your doctor have made and what plans you have for things like new treatments or surgeries or a change in your diet.

In between medical appointments, note your symptoms, what seems to trigger them, and any questions you have for your doctor. Maybe you’ve been reading about a new medication and you wonder why you aren’t taking it. Or maybe you’re having problems with other symptoms -- like sleep, fatigue, or depression -- that you might not remember to bring up at your next appointment.

“Write down anything that seems important to you, and bring those questions and concerns to your next visit. When you get in a situation where you’re uncomfortable or nervous, it’s easy to forget what you want to talk about. Having a list helps make sure that you can talk about the things that are important to you,” Chachu says.

If you’d like to take a more tech-involved approach to tracking and managing your UC, you have plenty of options. “There are many apps that can help you track symptoms, keep up with your medications and refills, and otherwise take control of your disease,” Dalal says.

A few to check out include

  • IBD Healthline
  • My IBD Care
  • ColitisWatch
  • Colitis Tracker
  • Colitis Diary
  • MyColitis
  • My IBD Manager

Talk to your doctors about your preferences for treatment. There are a number of options for managing UC, and not all of them will be right for you. Don’t be afraid to voice your opinions and tell your doctor that you prefer oral medications over shots, for example.

You should also discuss what your short- and long-term goals are. For example, a short-term goal might be cutting the number of times you have diarrhea. A longer-term goal might be getting your disease under control so you can start a family.

“Try to leave every appointment with a plan,” Chachu says. “If your next appointment is in 3 months, your plan for the time in between might be to get laboratory tests, take your medications as discussed, keep track of your symptoms, and let your doctor know how you’re doing with an email or patient portal message in a month. Your doctor does their part, you do yours, and together you work toward making you feel better.”

This whole process is called shared decision-making. It means the doctor may be the specialist in your disease, but you’re the specialist in you. The Crohn’s and Colitis Foundation has an online guide called Treatment Approaches: Shared Decision-Making to help you take a shared decision-making approach to your care.

What if you feel like your doctor isn’t listening to you? “It’s always OK to seek a second opinion,” Chachu says. “Don’t worry about offending your doctor. A good doctor who wants good things for you will be OK with your consulting another physician. And the vast majority of doctors appreciate having patients who are active partners in their care, so we can work together to get the best outcomes for you.”