5 Things I've Learned about IBD Over the Years

It’s been 30 years since I received my Crohn’s disease diagnosis, which is a form of inflammatory bowel disease (IBD). During that time, I have witnessed profound advances in understanding IBD and incredible changes in available treatments, including the advent of biologics. I have also become a much savvier patient. The following are five things I've learned about IBD that have helped me keep it under control.

In the early years of having IBD, there was no known connection between diet and disease flare-ups. Research has shown that diet can play a role in IBD. Resources like Nutrition Therapy for IBD provide the latest tips on dietary options and offer recipes that fit your dietary needs and restrictions. I now work with a registered dietitian and consider my diet one of the most important things that keep me in remission.

Even after living with Crohn’s disease for more than 20 years, I struggled with disease flare-ups. I felt isolated and struggled with my preexisting major depressive disorder and the impact flare-ups had on my daily life. I decided to search online for a support group. Joining and becoming an active member of Girls With Guts, was one of the best decisions I have ever made.

IBD symptoms like incontinence and debilitating pain, can make it difficult to maintain friendships and have a social life. Peer support reminds me that I am not alone, offers social opportunities due to friendships made in the support group, and has enhanced all facets of my life. I also have taken advantage of online events offered in my support group like crafting with other women who have IBD or ostomies. Not only does it combat the isolation of IBD, but it also gives me access to a community where I can ask questions of and learn from others’ experiences.

There are tons of support groups to choose from online, ranging from Zoom meetings with Crohn's and Colitis Foundation facilitators to Facebook communities, as well as discussion boards and private forums. There’s a support group out there for everyone.

When I go to my doctors’ appointments, I bring a list of questions, symptom trackers, and other information that I hope to discuss. Preparing ahead of time for appointments ensures that I get the most out of visits. I am the center of my care team, and it is my job to advocate for myself. That means knowing my medical history and medication lists, staying informed about the latest research in IBD, asking questions, and if I’m not satisfied with my provider, finding a new one.

Living with IBD is already hard. Add stress to the mix and it can be overwhelming. Research has shown that psychological stress plays a role in disease progression. Working with a therapist and learning ways to combat stress has helped me control symptoms and improved my overall health. Mental illnesses like depression and anxiety often can occur with IBD. Being in active treatment for these illnesses helps me to not only be more present in my life, but also practice better self-care, which I have found plays a role in reducing my symptoms.

Over the years, I have been hospitalized in a variety of places, seen doctors who work in a wide range of settings including stand-alone offices, larger academic teaching hospitals and in rural small-town hospitals. I have also used a variety of pharmacies that range from chain pharmacies to independent ones for my medications. Where I seek treatment, the affiliations of my physicians, and the pharmacies I work with matter significantly.

The best primary care I have had was at an office that offered care coordination. Care coordinators helped to set up referrals and appointments and took some of the administrative tasks off my shoulders. Similarly, I use a specialty pharmacy located within a larger teaching hospital. As a patient of that pharmacy, I receive regular consultations with the pharmacist, and they navigate all my prior authorization needs, as well as referrals to prescription savings programs.

These services are not available at every pharmacy or primary care office. So, make sure to ask if they are offered. I have also found that I prefer to see a gastroenterologist (GI) at an IBD clinic within a larger teaching hospital. In this setting, my doctor works primarily with IBD patients, has access to clinical trials hosted at the hospital, and can refer me to other specialists. While I must travel over an hour to see my GI, he offers the best practices for managing IBD. And, the clinic refers patients to IBD registered dietitians and related mental health resources. I’ve found that when I went to a GI at a smaller hospital or in a stand-alone office I did not have access to the added resources of a teaching hospital and my GI was not as up-to-date on the latest advances in IBD.

I have found that having IBD can be hard at times, but it’s manageable, and remission is possible. Finding support, advocating for yourself, and choosing healthy lifestyle habits, like managing your stress and following a recommended diet, are key to living a full life with Crohn's disease.