How to Advocate for Yourself
If you have ulcerative colitis, one of the best ways to stay healthy and keep your condition under control is to take charge of your own care. It means becoming an expert in yourself – your condition, your health, your needs – and working with doctors and a healthcare team who treat you like a partner.
“It’s invaluable when you can participate in shared decision-making, understand the risks and benefits of therapy with your providers,” says Sushila Dalal, MD, a gastroenterologist at the University of Chicago, specializing in inflammatory bowel disease (IBD).
So how do you do this?
Do your homework
You don’t have to go to medical school and become a gastroenterologist, but spending a few hours learning all you can about UC can help. Find out what causes it, how it’s treated, how your diet may change, and more. It will help you understand what you are going through and take control of your future.
“Look for information approved by experts in the field,” says Dalal. A good place to start is the Crohn’s and Colitis Foundation of America. The organization offers a wide range of educational resources, including a very rich video called Ulcerative colitis 101.
“You can also find educational information at major medical centers with IBD programs,” says Dalal. The best hospitals like the Mayo Clinic and the Cleveland Clinic have information about UC online. The same goes for the American Society for Gastrointestinal Endoscopy and the Canadian Society of Intestinal Research.
Additionally, the Jennifer Jaff Careline at 844-244-1312 offers case management for people with UC and other forms of inflammatory bowel disease (IBD). The people there can help you with financial challenges, like enrolling in Medicare and Medicaid, and appealing denials of coverage from your insurance company.
Find the right partners
UC is a chronic condition, which means you’re going to have it for a long time – probably the rest of your life. You want to forge a solid and lasting partnership with a care team with which you feel comfortable. Your primary care doctor may refer you to a gastroenterologist or an IBD program, but you can also get referrals from friends (you might be surprised at how many people you know have a gastrointestinal condition. gut or know someone who a), support groups online or through the Crohn’s and Colitis Foundation database.
The right partners for your UC journey can include more than your healthcare team. Seek advice from other people with UC. You can find them through support groups in person or online.
“We often match patients with a mentor, someone else who has had the same surgery or has had similar treatment,” says Dalal. “They can offer a different perspective than a supplier. It is a great resource, especially when you are faced with a big decision like having surgery.
Ask about your hospital’s support groups or mentoring programs, or find local support through the Crohn’s and Colitis Foundation.
Having a chronic illness means there’s a lot of information to keep track of, from symptoms and medications to side effects and doctor’s appointments. But keeping it organized can help.
How you do this is entirely up to you, says gastroenterologist Karen Chachu, MD, PhD, assistant professor of medicine at Duke University School of Medicine. “It doesn’t have to be fancy. But it is very helpful for your healthcare team to keep a record, notebook, calendar, or box of information about your condition and treatment, especially if for some reason you see a new doctor.
During or immediately after each visit, take notes on the decisions you and your doctor have made and any plans you have for things like new treatments or surgeries or a change in your diet.
Between medical appointments, write down your symptoms, what seems to be triggering them, and any questions you have for your doctor. Maybe you have read a new medicine and wonder why you are not taking it. Or maybe you have issues with other symptoms – like sleep, fatigue, or depression – that you might not remember to mention on your next date.
“Write down anything that is important to you and bring up those questions and concerns on your next visit. When you find yourself in a situation where you are uncomfortable or nervous, it is easy to forget what you want to talk about. Having a list makes sure that you can talk about the things that are important to you, ”says Chachu.
If you want to take a more technological approach to tracking and managing your UC, you have many options. “There are many apps that can help you track symptoms, track your meds and refills, and take control of your disease,” says Dalal.
A few to check out include
- IBD Healthline
- My IBD treatments
- Colitis follow-up
- Colitis diary
- My IBD manager
Speak for yourself
Talk to your doctors about your treatment preferences. There are a number of options for managing UC, and not all of them are right for you. Don’t be afraid to voice your opinions and tell your doctor that you prefer oral medications to injections, for example.
You should also discuss your short and long term goals. For example, a short-term goal might be to reduce the number of times you have diarrhea. A longer-term goal may be to get your disease under control so that you can start a family.
“Try to leave every date with a plan,” Chachu says. “If your next appointment is in 3 months, your plan for the meantime might be to have lab tests, take your medications as directed, monitor your symptoms, and notify your doctor about your condition by e-mail. -mail or patient portal message in a month. Your doctor is doing their part, you are doing yours, and together you are working to make you feel better.
This whole process is called shared decision making. This means that the doctor may be the specialist in your disease, but you are 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 that your doctor is not listening to you? “It’s always okay to ask for a second opinion,” Chachu says. “Don’t worry about offending your doctor. A good doctor who wants good things for you will agree to see another doctor. And the vast majority of physicians appreciate having patients who are active partners in their care, so that we can work together to achieve the best results for you.
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