What is Crohn’s disease
According to David T. Rubin, MD, Associate Professor of Medicine and Co-Director of the Inflammatory Bowel Disease Center at University of Chicago Medical Center, Crohn’s disease is a chronic immune-mediated intestinal disorder, in which the body’s immune system attacks the gastrointestinal tract and, sometimes, the surrounding organs.
More common in women, but affecting both men and women of all ages, Crohn’s disease is characterized by periods of active inflammation and symptoms followed by periods of less severe symptoms and even remission. “Because Crohn’s disease can involve any portion of the intestinal tract from the mouth all the way down to the anus, symptoms may vary substantially among patients,” says Dr. Rubin.
He adds, “The most common symptoms of Crohn’s disease are abdominal pain (often in the right lower quadrant) and diarrhea. Some patients will have nausea or vomiting due to bowel obstruction, and some will have blood in their bowel movements. In children, sometimes the only presenting problem is a failure to grow or to achieve developmental milestones.”
Other symptoms, as experienced by Olympic kayaker Carrie Johnson, are extreme fatigue, anemia and significant weight loss (be sure to read Competing with Crohn’s for Johnson’s courageous battle with Crohn’s while training for and competing in the Olympics).
Early diagnosis of Crohn’s leads to better outcomes
Dr. Rubin says that because most people with Crohn’s disease are young when their symptoms start (most between 15 to 30 years old), the diagnosis is often delayed or not even pursued. “People attribute their problems to an irritable bowel, to stress or their diet,” he adds.
Dr. Rubin also emphasizes that Crohn’s is a type of inflammatory bowel disease, and not irritable bowel syndrome (IBS), as it is sometimes mistakenly referred.
Unfortunately, because many people with Crohn’s suffer a long time before they get diagnosed, it is possible that they will need hospitalization or surgeries to remove portions of the bowel that are affected. Dr. Rubin says, “We have learned that early diagnosis and effective treatment provide better outcomes of care and help patients achieve healthy, normal lives. Better therapies have really improved our ability to control this condition.”
However, it is imperative that you see your doctor if you have intestinal irregularity or symptoms that have persisted beyond a week or two. And pursue an accurate diagnosis with a specialist if the problem persists.
Top 6 things to do if you have Crohn’s disease
Though you will have Crohn’s for life, Dr. Rubin says “its not a life sentence.” There are things you can do to manage your condition. Here are six of them.
1. Expect and demand to live a normal life and pursue your dreams. “Many people think that once they are diagnosed with a chronic bowel disease like Crohn’s, they should expect to live an unpredictable life in the bathroom and that they will be socially isolated. That couldn’t be further from the truth,” says Dr. Rubin. “Carrie Johnson is a fantastic role model for all of us.”
2. Find a doctor who will listen to you. Dr. Rubin stresses that if you have Crohn’s or suspect you have Crohn’s, see a specialist who understands Crohn’s disease or see a medical professional who will send you to specialist if you need it. “Communicate symptoms or new problems early, so adjustments can be made to keep you well. In the last two years alone, the FDA has approved three new therapies for Crohn’s disease, and there are more to come,” he says.
3. Expect remission. Remission of Crohn’s is characterized by the absence of inflammation and symptoms due to the inflammation. Dr. Rubin says that the newest therapies for Crohn’s disease are effective at achieving remission, and that you shouldn’t settle for anything less than remission. Find a new doctor if yours can’t find the right treatment protocol to achieve remission.
4. Stay on your medications. Dr. Rubin is very emphatic about you staying on the medications prescribed by your doctor. He says, “The standard approach to managing Crohn’s disease includes a maintenance plan, which is designed to keep you in remission and prevent relapses. It takes much less energy and time to keep you in remission than it does to get you back if you relapse because you have not been taking your medications.” And it is nearly inevitable that a relapse will occur if you don’t take your medications as prescribed.
5. Ask questions. Knowledge is power, so look for reliable sources of information and learn what you can to take control of your condition, and not let Crohn’s take control of you. Dr. Rubin recommends not falling into the pit of what he calls the “testimonial terrors.” It is easy to get wrapped up in reading too many horrific individual testimonials about Crohn’s on the Internet, many of which often don’t apply to you, your condition or your treatment protocol. Dr. Rubin suggests reliable sources of information, such as Crohn’s and Colitis Foundation of America, CrohnsAndMe.com and the Web sites for some of the major medical centers, such as the Mayo Clinic, Johns Hopkins, and the University of Chicago. In addition, ask your doctor any and all questions you have and be sure to question your treatment plan, if something is not working for you.
6. Attend patient-only support groups. There are a number of support groups for people with Crohn’s and family members with loved ones with Crohn’s. Dr. Rubin says that support groups are a successful coping strategy for everyone involved, but particularly the person with Crohn’s. “We teach our patients that it can be very helpful for them to attend patient-only support groups so they develop a broader network of support for their condition and can therefore not always lean on the same small circle of loved ones,” he adds.
What you should know if you are a loved one of someone with Crohn’s
Crohn’s disease affects more than just the patient. Because it can affect an individual’s ability to function in social environments, it can result in strains on family and interpersonal relationships.
Dr. Rubin says, “Those who are closest to the person with Crohn’s disease should learn all that they can about the condition, attend patient education seminars with them, and be understanding and flexible when their loved one isn’t feeling well enough to go out or complete planned activities. They should also encourage them to seek the best treatments and achieve an unrestricted quality of life.”
Bottom line
If you have Crohn’s, don’t simply accept Crohn’s as a disease that is going to forever negatively change your life. Carrie Johnson could have let the disease destroy her dreams of competing in the Olympics (and it almost did), but, instead, she chose to diligently seek treatment and compete in both the Athens, Greece Olympics in 2004 and, this year, in the Beijing, China Olympics. You may not have Olympic dreams but you still owe it to yourself to pursue the goals you have and take control of your condition. Crohn’s can be managed with proper treatments, and you can live your life to its fullest.
And if you don't have Crohn's but do want to keep your gastrointestinal system running smooth, check out 10 tips for digestive health, guidelines put forth by the World Gastroenterology Organization (WGO).
