Crohn’s disease may not be as well-known as cancer or heart disease, but it can consume a person’s life just as much, if not more so. Crohn’s is a chronic inflammatory disease of the gastrointestinal (GI) tract. It most often affects the large and small bowels, though it can wreak havoc on any part of the GI tract.

Here are 14 things doctors want you to know about this disease.

1. There are flare and remission phases

Most people with Crohn’s disease cycle through flare-ups and remissions. Symptoms related to GI inflammation are at their worst during a Crohn’s flare-up. During a remission phase, Crohn’s sufferers feel pretty normal.

Common symptoms of a Crohn’s flare-up include:

  • abdominal pain (which typically worsens after meals)
  • diarrhea
  • painful bowel movements
  • blood in stool
  • weight loss
  • anemia
  • fatigue

Crohn’s disease can also manifest in other ways, such as joint pain, eye inflammation, and skin lesions, says Aline Charabaty, M.D., director of the Center for Inflammatory Bowel Diseases at MedStar Georgetown University Hospital.

2. More people are diagnosed each year

More than 700,000 Americans have been diagnosed with Crohn’s disease, according to the Crohn’s & Colitis Foundation of America (CCFA). That number is continuing to rise.

Immune-mediated diseases in general, including inflammatory bowel diseases and Crohn’s, have increased in recent years, says Charabaty. This increase is mainly seen in industrialized countries.

Men and women are equally affected, and symptoms of the disease can start at any age. However, it most often shows up in adolescents and young adults between the ages of 15 and 35.

3. No one knows exactly what causes Crohn’s

The specific causes of Crohn’s disease are unclear. Most researchers believe it is the result of a combination of factors. These factors include the interaction of three things:

  • genetic or hereditary factors
  • environmental triggers, such as medications, pollution, excessive antibiotic use, diet, and infections
  • a wayward immune system that starts attacking its own GI tissue

More research is being done around the connection between environmental factors and Crohn’s disease.

4. Family history could play a part

If you have a family history of irritable bowel disorders, you may be at an increased risk for developing Crohn’s disease. Most people with Crohn’s disease, however, have no previous family history. That’s why researchers believe the environment could play an important role in understanding this disease.

5. You can’t cause Crohn’s

Doctors don’t know what causes Crohn’s disease, but they do know that people aren’t causing it themselves, says Matilda Hagan, M.D., a gastroenterologist at Mercy Medical Center in Baltimore.

6. Smoking can make symptoms worse

There may be a connection between smoking cigarettes and Crohn’s disease. Not only can smoking cause people to have worse or more frequent symptoms, but some data suggest that cigarette smoking may even increase your chances of developing Crohn’s disease.

“Smoking has been reported to affect the overall severity of the disease, with smokers having a 34 percent higher recurrence rate than nonsmokers,” says Akram Alashari, M.D., a surgeon and critical care physician at the University of Florida.

7. There are many ways to treat Crohn’s disease

Crohn's disease can present itself in a myriad of different ways. Your symptoms and frequency of flares could be different from another person with the disease. Because of this, treatments are tailored to the particular symptoms and severity of any given individual at any given time.

There are many medical therapies available to treat Crohn’s disease. Therapies include immunosuppressives, steroids, and biologics.

Current research is looking at new treatment options. These include manipulating the gut bacteria with antibiotics, probiotics, prebiotics, and diet. Fecal microbiota transplants are also being explored. More research needs to be done to determine effectiveness for the treatment of Crohn’s. Preliminary studies have shown promise for ulcerative colitis, another inflammatory bowel disease.

Most treatments are aimed at controlling the different parts of the immune system that lead to increased inflammation and debilitating symptoms, says William Katkov, M.D., a gastroenterologist at Providence Saint John’s Health Center in Santa Monica, California. 

8. Crohn’s disease may increase your risk of GI cancer

The risk of colorectal cancer is higher about in people with Crohn’s disease. This risk increases the longer a person has Crohn’s.

9. Surgery is a reality, but rarely a cure

Many people with Crohn’s disease will undergo surgery at some point in their life. Surgery is used when medication is not enough to keep the disease under control. The disease and scar tissue can lead to bowel obstructions and other complications. Surgery is often only a temporary solution.

10. Early diagnosis is the best treatment

The sooner someone is diagnosed with Crohn’s, the better chance that doctors have at improving that person’s quality of life, says Rubin. Look for a doctor who has experience treating Crohn’s disease. Because the disease and the treatment options are often complex, you will want to work with a doctor who has extensive experience treating people with Crohn’s.

11. Crohn’s often goes undiagnosed for long periods

Crohn's disease often goes undiagnosed for long periods of time. If you have chronic abdominal pain and diarrhea, or other persistent and unexplained GI symptoms, you should speak with your doctor about the possibility of having Crohn’s.

12. Crohn’s disease can have a huge impact on a person’s life

Crohn’s disease often starts when a person is young and continues to affect them throughout their life. Because of this, the disease can take a toll on even the strongest person. Not only can the symptoms become debilitating, but also people with Crohn’s often have multiple doctor’s appointments, tests, and procedures. Between the symptoms and the regular appointments, quality of life can be severely impacted.

A fear of rushing to the bathroom at any given moment, of being intimate, or explaining symptoms to friends can pervade everyday thoughts. Social outings can be stressful and your productivity at work may suffer.

13. Practical support can help as much as a hug

If someone you know or love has Crohn’s disease, emotional support is vitally important. Listen to their feelings, and be supportive and understanding. Practical aid can also be helpful.

Offer to do the grocery shopping, take them a home-cooked meal, or help out with other household errands. This can help remove stress from a person’s life. You may also offer to tag along to a doctor visit. Sometimes an extra ear is welcome and helpful.

14. Crohn’s is more controllable than ever before

Early diagnosis and access to the right experts can make it easier for Crohn’s to be controlled. If you suspect you may have the condition, speak with your doctor. The sooner you get help, the sooner you can lead a normal, pain-free life.

Living with Crohn’s

A diagnosis of Crohn’s disease is an important step towards getting better. Once you and your doctor know what you are dealing with, you can start planning a course of treatment.

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