Fast Facts About Crohn's Disease and Ulcerative Colitis

IBD FAQs from an Expert

IBD FAQs from an Expert

We tracked down an expert – Dr. Ellen Scherl – and asked her some common questions about the diseases.

Dr. Ellen Scherl is the Director of the Jill Roberts Center for Inflammatory Bowel Disease, the Jill Roberts Professor of Inflammatory Bowel Disease, and a professor of clinical medicine at Weill Cornell Medicine.  She is also an attending physician at NewYork-Presbyterian Hospital/Weill Cornell Medical Center. A well-known expert in IBD, Dr. Scherl specializes in Crohn’s Disease and Ulcerative Colitis, and has served as a principal investigator on many CD and UC clinical trials.

Common Questions from People with CD and UC

Will someone who has Crohn's disease (CD) or ulcerative colitis (UC) always have to be on treatment to manage the symptoms?

Because CD and UC are chronic and can impact all patients differently, the diseases need to be treated on an individual basis. Typically some form of ongoing management is required, particularly to achieve and maintain remission, which is one of the main goals of therapy, but exactly what that is varies from patient to patient.

One of the most important things someone can do is have an ongoing and open dialogue with a healthcare provider to determine the management plan that’s best for him or her. Having an active role, and at times taking charge of these conversations, is critical to finding the right treatment option.

Why do symptoms flare up when they do?

CD and UC symptoms may flare up for no apparent reason, but some possible triggers have been identified, including: medications not working, stress, eating certain foods, and smoking.

It can be very challenging both physically and emotionally to cope with symptoms. That’s why it’s so important for patients to work closely with their healthcare teams so that they feel comfortable telling them as much detail as possible about personal experiences. This will allow their healthcare teams to better monitor and help patients manage their health.

What else can be done to manage CD or UC?

Everyone experiences these diseases differently and has different symptoms. The most important thing people with IBD can do is to be in tune with how they’re feeling and discuss everything with a healthcare provider, who can then work with them on a personalized basis to help them better manage their disease.

Are there support groups for people with CD or UC? How about for loved ones/families?

Support for people with IBD, as well as support for their loved ones, is critical. What support looks like is different for each person – this could be a doctor, nurse, family and friends, others who are touched by this disease, or online communities.

There are many support groups, from in-person gatherings to online forums/communities. A helpful place to start can be through an advocacy organization such as CCFA, which has local chapter support groups, online support communities, peer-to-peer mentors, and various local and national education programs. To learn more, contact CCFA’s IBD Help Center or 1-888-694-8872.

Do you have any advice for how I can tell others what I’m going through, without sharing too many details?

Everyone should feel confident enough to unmask their CD or UC for their friends, families, and most importantly, themselves. When you’re with someone you trust, it can make it easier to feel more comfortable sharing details about your experiences.

As for others, you can share as little or as much as you want – from simply informing them you have IBD, which is a chronic and challenging disease requiring ongoing management, to letting them know more specifically what you’ve gone through. For helpful guides on how to talk to friends, family, and significant others about your IBD, check out the Join Forces page or visit CCFA’s IBD Help Center or 1-888-694-8872.

How can I tell if my IBD is truly under control?

It all comes down to how you feel on both a short- and long-term basis. If you find yourself actively planning your daily activities based on your symptoms, and making specific accommodations or preparations, it may be beneficial to talk with your healthcare provider about your symptoms.

It’s important for patients to pay attention to and closely monitor their symptoms, so they can share a detailed account with their healthcare provider. The most important thing you can do is be aware and keep track of everything you’re experiencing, physically and emotionally – keeping a journal or using a mobile app may help – and discussing these details with a healthcare provider. Don’t be afraid to speak up and ask if you can be doing better! There are multiple treatment options available, and working together with a doctor, people with IBD can find a treatment plan that is best for them.

General Questions About IBD

Is there a cure for inflammatory bowel disease (IBD)?

While there is no therapeutic cure for IBD (including CD and UC, the two most common types), there are many ways to help manage symptoms and the disease. If you have or think you may have IBD, speak with a healthcare provider about what you’re experiencing, and the two of you can identify the best disease management approach for you.

Is IBD genetic or hereditary?

While there is no known cause for IBD (including CD and UC, the two most common types), many researchers believe that the interaction between genes, the body’s immune system, the microorganisms that live on our bodies, and environmental factors may play a role.

Is IBD common?

IBD is not uncommon, with more than five million people worldwide affected by IBD. More than 1.6 million people in the U.S. are affected. In fact, 1 in 200 people in the U.S. has IBD.

How are CD and UC treated?

It’s especially important for people living with CD or UC to have an ongoing and open conversation with their healthcare provider about what they’re experiencing in order to find the treatment plan that’s best suited for them.

There are multiple treatment options available, and people with CD or UC should feel empowered to make shared decisions with their healthcare team. Active participation and shared decision-making can help facilitate conversations and give patients control over disease management, and also make sure they are receiving all of the information needed.

I know someone with IBD – what’s the best way I can help support them?

For people living with IBD, having loved ones who care enough to be involved and be part of their support system can be invaluable.

Living with a chronic disease like IBD may be challenging, isolating, mentally and physically exhausting, and embarrassing to discuss. That’s why having the support and understanding of family and friends is extremely important.

Sometimes simply letting friends and family know you are there to help in whatever way they need – perhaps to vent, to talk through a challenge, to help out in other ways when they aren’t feeling well, or any other number of things – is the first step. While some people living with IBD are forthcoming about their disease, others may feel reluctant to speak up – so it’s okay to offer a gentle reminder once in a while that you’re there for them.

Are IBD and IBS the same thing?

While both IBD and irritable bowel syndrome (IBS) affect the gastrointestinal or digestive tract, the two are very different conditions.

CD and UC are the two most common types of IBD, and are chronic diseases marked by inflammation in the lining of the gastrointestinal tract. UC impacts the large intestine, which includes the colon and the rectum, while CD can impact any part of the digestive tract, and predominantly affects the ileum.

IBS is a disorder characterized most commonly by cramping, abdominal pain, bloating, constipation, and/or diarrhea. IBS causes a great deal of discomfort and distress, but it does not harm the intestines and does not lead to other health problems.

It is important for any person experiencing gastrointestinal distress to discuss their symptoms with a healthcare provider to receive a diagnosis and proper treatment.

Someone I know has IBD. What should I not ask or say to them?

Having the support of family and friends can play a vital role. The best thing you can do is be there for them in whatever capacity they need. If you aren’t sure how to help but want to do something, ask. For helpful hints check out the Join Forces page.

For what not to do, try to not judge, criticize or belittle what this person is going through. IBD can be very physically and emotionally challenging, and people living with it need positive, empowering, understanding and encouraging support – not the opposite.

Management of CD and UC

The most important step in managing your disease is to have a conversation with your healthcare team to determine the best approach for you.

The five main classes of medications used to manage CD and UC include:

  1. Antibiotics
  2. Aminosalicylates
  3. Corticosteroids
  4. Immunomodulators
  5. Biologic therapies

Surgery may be recommended for complications caused by UC and CD.

CLICK HEREFor more information about a prescription treatment option for adults with moderately to severely active Crohn’s disease and ulcerative colitis.

IMPORTANT NOTICE: The content on IBDUnmasked.com is not, nor is it intended to be, medical consultations, diagnoses, or treatment recommendations. The content on this site is not intended to replace guidance from your healthcare providers. Always consult your healthcare providers for all medical- and health-related matters.