National Crohn’s and Colitis Awareness Week: FAQs for Living With These Diseases

December 1-7 is National Crohn’s and Colitis Awareness Week. An estimated 3.1 million adults have been diagnosed with inflammatory bowel disease (IBD), which includes both Crohn’s and colitis. We sat down with Capital Digestive Care’s very own expert, Dr. Erica Cohen, who offered insights into treatment options and recommendations for those living with these diseases.

Q: What’s the difference between Crohn’s disease and ulcerative colitis?
A. Both Crohn’s disease and ulcerative colitis are immune-mediated diseases that cause inflammation of the intestinal tract. Ulcerative colitis starts in the rectum and can extend up through the rest of the large intestine. Crohn’s disease can cause inflammation anywhere in the intestinal tract (esophagus, stomach, small intestine, or large intestine). Ulcerative colitis manifests as redness or ulcerations of the colon. Crohn’s disease can cause ulcerations or inflammatory disease, but also can cause narrowing of the intestinal tract due to scar tissue (called a stricture), or fistula formation. A fistula is a connection between two organs that should not otherwise be there. A certain portion of patients with IBD can also have extraintestinal manifestations, which include oral ulcers, joint pains, rashes, eye redness, or pain and inflammation of the liver.

Q. Is one worse than the other?
A. One is not “worse” compared to the other. You can have mild Crohn’s disease or severe ulcerative colitis and vice versa. It is more important for you and your care team to understand how your disease behaves. What are your typical symptoms of a flare? Where is your disease located in your gut? Do you have any extraintestinal symptoms? What are you blood or stool test abnormalities? Understanding your disease is important to monitor to optimize therapy and ensure your disease is adequately controlled.

Q. How are these conditions diagnosed?
A. The gold standard of diagnosis is made through an endoscopy/colonoscopy and obtaining biopsies. Certain diseases can mimic IBD such as high NSAID use, or certain infections. Your care team should take together your clinical presentation, and endoscopic and histologic (pathology) findings to make the diagnosis.

Q: Is there a cure for these conditions?
A: Currently there is no cure, although scientists around the world are working very hard to find one. In the meantime, we have an excellent armamentarium of medications to induce a clinical remission (resolution of symptoms) so that you have an excellent quality of life. However, data shows we cannot stop at clinical remission (or feeling well) because that is not associated with less flares in the future. Our next goal is endoscopic remission– meaning the inflammation seen in your intestinal lining has healed. The most durable remission is histologic remission, which means healing the microscopic inflammation seen on biopsies. We know that endoscopic and histologic healing is associated with less risk of flares, hospitalizations, and surgeries in the future. So, while we don’t currently have a cure, we have excellent treatment options that can induce a durable remission.

Q: What dietary recommendations do you suggest for someone with Crohn’s or colitis?
A: There are a variety of dietary recommendations that are best used as adjunct therapies to standard medications. For patients who have severe active inflammation or structuring Crohn’s disease, a low fiber/residue diet may minimize exacerbation of symptoms. This is not a recommended long- term diet. Data has shown that a Mediterranean diet is as effective as a more restrictive specific carbohydrate diet at inducing clinical remission in Crohn’s disease. To date, no diet has improved objective inflammatory markers, however more studies are needed to evaluate the ability of diet to heal active inflammation.

Q. Do these conditions cause or lead to more serious GI conditions?
A. Patients with ulcerative colitis beyond the rectum, or Crohn’s colitis in at least one third of the colon are at increased risk of colon cancer 8-10 years after diagnosis. This risk improves with endoscopic healing. After having IBD for 8-10 years, you should start getting colonoscopies every 3-5 years. A small percentage of patients will have an inflammatory condition of the bile ducts called primary sclerosing cholangitis. This is associated with a very high risk of colon cancer and requires colonoscopy surveillance every year.

Q. How do Crohn’s or colitis affect someone’s daily life?
A. The goal of your care team is to try and minimize the effect IBD has on your life. We want to you get married, travel, go to school and have children if you desire. However, a flare can lead to debilitating abdominal pain, diarrhea, bleeding and significant urgency to have a bowel movement which can truly impact your life. That is why we cannot just rely on clinical symptoms. Your care team should monitor you with blood tests, stool tests and periodic endoscopic or imaging studies to identify potential disease before you feel it. This proactive approach lets us adjust our treatment plan ideally before you feel sick. That is why it is important to follow up with your team even if you feel well.

Q. When should someone with Crohn’s or colitis make an appointment with their GI specialist?
A. Patients on immunosuppressive therapies with active symptoms should be seen frequently to evaluate for response to treatment and adverse effects. Once clinical and endoscopic response has been confirmed, you should still check in with your care team twice a year and have periodic blood and stool tests to monitor for disease activity and adverse effects.

Q. How long are patients on medication?
A. In my personal practice, I request that patients remain on their current medications for three years after we have confirmed healing. Then we can have a risk versus benefit discussion of medication cessation. There is generally about a 50% risk of relapse by 3 years. I will not be able to confirm that we can recapture a response with the same medication in the future. Further, certain medications have an increased risk of side effects after a prolonged drug holiday. But I promise that we can have an in-depth discussion about the risks vs. benefits of medication cessation after three years. Most patients elect to continue on therapy as long as it is maintaining their remission. It is also important to recognize that IBD and our medications can affect other parts of the body. We recommend you obtain all non-live vaccinations including influenza, pneumonia, shingles, HPV, and COVID-19. Addressing mental health needs is integral to gut health. And, pre-conception counseling and optimizing nutrition and bone health are all part of holistic IBD care.

Q. How do inflammatory bowel diseases affect pregnancy?
A. Data shows that if you have active inflammation in your gut, it’s difficult for your body to fight inflammation and successfully grow a fetus. With active inflammation there is a higher risk for spontaneous abortion, early term labor, and complications for both the mother and fetus. Be sure to talk about your potential timeline for pregnancy with your care team. You must be on a medication that is safe in pregnancy, and a pre-conception colonoscopy to confirm endoscopic healing is recommended. If you have endoscopic healing leading up to pregnancy, the risks of complications are generally similar to those without IBD.

Q. What’s your outlook on current treatment options for Crohn’s and colitis?
A. It’s a very exciting time in the field of IBD. In the last 5-10 years, we’ve revolutionized how we think about IBD, how we monitor it, and how we treat it. We realize that different ethnicities and races may have different disease types and responses to certain medications. Further, we have an arsenal of medication options and a lot more coming down the pipeline. I am also hopeful we will be able to use precision medicine to identify your individual inflammatory disease and start a medication based on your own specific biology. There is a lot to be excited about and I feel privileged that my patients trust me to support them on their journey.

For more information on Dr. Erica Cohen, check out her bio. Or, to schedule an appointment with her, please click here.