Five Tips to Navigate Life with a Chronic Illness like IBD

When Dewey Thom was a teenager in the 1970s, he started experiencing stomach pains, which led to a series of invasive tests over a period of many months. Finally, his gastroenterologist told him he had ulcerative colitis, which at that time was thought to mainly impact middle-aged patients.

However, Dewey didn’t let his disease define him. With the support of his parents, he pursued his goals: playing basketball and soccer, attending college, studying abroad in France, and becoming a successful institutional stockbroker. He even participated in 23 Team Challenge races, including the New York City Marathon.

Dewey has thrived and now enjoys traveling the world since he retired, but it hasn’t always been an easy journey. In 1986, he underwent J-pouch surgery, and in 2005, his diagnosis was changed from ulcerative colitis to Crohn’s disease. Through it all, Dewey’s strong resiliency has allowed him to keep a positive outlook on life while managing a chronic disease.

The Centers for Disease Control and Prevention define a chronic disease as a condition that lasts more than a year. Chronic illnesses, including Crohn's disease and ulcerative colitis (collectively known as inflammatory bowel disease or IBD), have a significant impact on the American population. More than half of Americans are affected by these conditions. Six in 10 adults in the U.S. have a chronic disease and four in 10 have to cope with two or more chronic conditions. Individuals with chronic conditions, which include cancer, heart disease, stroke, diabetes, and arthritis, may face daily symptoms or experience fluctuating symptoms.

If you've recently been diagnosed with a chronic illness, it's natural to feel confused and scared. Here are five strategies to help you cope with your chronic condition:

1. Educate Yourself and Your Family

The more you learn about Crohn’s disease and ulcerative colitis, the more confident you’ll feel about managing your condition. The Foundation’s MyIBD Learning education programs offers in-person, virtual, and on-demand information on research, treatments, and clinical trials. The IBD Medication Guide is a comprehensive guide of all medications available for patients with Crohn’s disease and ulcerative colitis, so you can make an informed decision about what medication is best for you.

2. Seek Support

Connecting with others who have IBD is crucial when you’re newly diagnosed. The Foundation’s Power of Two mentoring program provides an excellent way to connect with fellow patients and caregivers. The Foundation also offers in-person and Facebook support groups that cater to the diverse needs of the IBD community, including veteran, Hispanic/Latino, Black/African American, and LGBTQIA+ patients. For more information on how the Foundation can support you, reach out to the IBD Help Center or your local chapter for assistance.

3. Strive For Acceptance

“One of the most important things one can do for themselves when diagnosed with IBD is to give themselves grace,” said Laurie Keefer, PhD, a psychologist at the Icahn School of Medicine at Mount Sinai who specializes in caring for patients with chronic digestive diseases. “A chronic, lifelong condition will bring many challenges – adopting an accepting, growth mindset will carry you far in the journey.”

“The biggest thing is acceptance,” said Dewey, who co-facilitates one of the Foundation’s support groups in Northern California. “Somehow, I figured out how to accept I had this disease, and I had to live with it and fight it. I meet a lot of patients who struggle with accepting that they will have to take medication for the rest of their lives. I get it because I also struggled with that.”

Taking care of your mental and emotional health is just as important as treating your physical symptoms. If you feel you may be struggling with depression or anxiety, seek treatment from a mental health professional. You don’t have to suffer in silence.

4. Find the Right Care Team

Seeing the right healthcare expert is crucial, yet some patients don’t know where to start or don’t understand the difference between types of specialists. The first step is to find a qualified gastroenterologist who is a specialist in treating patients with Crohn’s disease or ulcerative colitis. The Foundation’s “Meet Your IBD Care Team” video highlights the roles of the various providers who can be involved in your care—including gastroenterologists, psychologists, and colorectal surgeons—and the importance of coordinated care. You’ll also want to track your symptoms — be mindful of how you feel physically and emotionally on a daily basis. Partner with your doctor and take an active role in your care. Don’t be afraid to speak up and let your healthcare team know your preferences, goals, and concerns.

5. Better Navigate Daily Life Using Tools

Managing the physical symptoms of Crohn’s disease and ulcerative colitis is just one part of living with IBD. The following tools can support you in leading a full life while you manage your IBD.

“What can I eat?” is the number-one information request received by the Foundation. To address this, the Foundation created Gut Friendly Recipes, a free online resource designed to help everyone with IBD and other gut issues find recipes that work for their diets and take some of the stress out of meal preparation.

Patients with Crohn’s disease or ulcerative colitis can have unexpected and urgent needs to find a restroom at a moment’s notice. The We Can’t Wait app makes is easy to locate publicly accessible restrooms on the go. When faced with a chronic illness, it is important to access the right strategies to help you manage your condition. The Foundation is here to support you on your journey and help you navigate the challenges more effectively.

You can make an impact on IBD cures! Please consider making a donation to the Crohn’s & Colitis Foundation.