Staying Informed: Resources for Patients and Caregivers

Inflammatory bowel disease, or IBD, refers to a long-term disease that causes inflammation and irritation in your digestive tract. Common types of IBD are Crohn’s disease and ulcerative colitis. Current estimates of people living with IBD in the United States vary greatly depending on where the data is coming from; however, it is estimated that anywhere from 2.4 to 2.8 million people are living with IBD. Unfortunately, it’s thought that the prevalence is on the rise.

Luckily, chronic IBD research is making strides for those living with irritable bowel disease! At Foodguides, we know how important resources for patients and caregivers can be. So, we will discuss those resources in this article to help you stay informed about the latest research advancements. It is with good news to share that there is hope on the horizon for the IBD community!

Reliable Websites for Crohn’s and Ulcerative Colitis Information

Whether you were recently diagnosed with IBD or have been living with IBD for a while, there are resources that you’ll want to save to your favorites list. You must look at resources from reliable sources. I often suggest two sources to my patients: the Crohn’s & Colitis Foundation and the National Institutes of Health.

You'll find a plethora of information on the Crohn’s & Colitis Foundation website. The information ranges from the basics of just getting diagnosed with IBD to nutrition and diet to treatment options. They even have a medication guide, which is very useful! The medication guide is your one-stop shop when you are trying to learn more about any medications your doctor has prescribed. This removes the pain of having to search multiple platforms to find the information you want. In the guide, you can see what drug class the medication is, the delivery method (oral or injection), if it’s safe for pregnancy and breastfeeding, and common side effects. 

Something else that I love about the Crohn’s and Colitis Foundation is the option to connect with others. They have local resources where you can find a chapter, a support group, and even upcoming events! The fact that there is an easy way to connect with others experiencing the same IBD difficulties as you can be very helpful.  

Similarly to the Crohn’s and Colitis Foundation, the National Institutes of Health (NIH) offers a wealth of resources. At the NIH, you can find the definition and facts on Crohn’s disease, as well as symptoms, how people typically get diagnosed, treatment options, and diet and nutrition guidelines. 

The Role of Clinical Trials in Advancing IBD Treatment

Clinical trials are research studies that involve people and are one of the final stages of a long research process. They are very important as they look at new ways to prevent, detect, or treat disease and are essential to all medical advancements. Not only can clinical trials help with medical advancements, but they are also designed to improve the quality of life for people with chronic illnesses. 

If you choose to volunteer for a clinical trial, it is imperative that you talk to your doctor about whether or not it is right for you. Volunteers are an important piece of clinical trials as they can help researchers figure out if their research will be successful. To learn more about clinical trials, visit www.ClinicalTrials.gov and search for Crohn’s or visit the clinical trials sections of the Crohn’s & Colitis Foundation and the National Institutes of Health.

1. _{Lewis, J. D., Parlett, L. E., Jonsson Funk, M. L., Brensinger, C., Pate, V., Wu, Q., Dawwas, G. K., Weiss, A., Constant, B. D., McCauley, M., Haynes, K., Yang, J. Y., Schaubel, D. E., Hurtado-Lorenzo, A., & Kappelman, M. D. (2023). Incidence, Prevalence, and Racial and Ethnic Distribution of Inflammatory Bowel Disease in the United States. Gastroenterology, 165(5), 1197–1205.e2. https://doi.org/10.1053/j.gastro.2023.07.003} 
2. _{U.S. Department of Health and Human Services. (n.d.). Crohn’s disease - NIDDK. National Institute of Diabetes and Digestive and Kidney Diseases. https://www.niddk.nih.gov/health-information/digestive-diseases/crohns-disease}