Crohn’s disease, an inflammatory bowel disease, currently has no cure. And the chronic condition can leave sufferers doubled over, dealing with symptoms ranging from abdominal cramps and pain to persistent diarrhea, or alternatively constipation, as well as fever and fatigue.

“The most common age of diagnosis is the late teens and early 20s,” says Dr. Corey Siegel, director of the Dartmouth-Hitchcock Inflammatory Bowel Disease Center in Lebanon, New Hampshire, and co-chair of the Crohn’s & Colitis Foundation’s IBD Qorus quality of care initiative. Crohn’s can be particularly disruptive — at a time in life when many people aren’t accustomed to taking medications regularly or managing a chronic disease — making it difficult to keep up with classes or increasing sick days and reducing work hours.

Fortunately, there have been advances in treatment over the past couple decades — most notably, the development of biologic drugs that are used to treat Crohn’s. Experts say these drugs, starting with the approval of Remicade in 1998, have improved management of Crohn’s disease for many patients. “There’s less side effects associated with them, and the response rates and the improvements in symptoms are much better,” says Dr. Robert Sinnott, a colon-rectal surgeon at Lehigh Valley Hospital in Allentown, Pennsylvania. By taking the drugs, many with Crohn’s disease are able to induce remission. “Remission meaning symptoms go away, and we look inside their bowel with either colonoscopy or imaging such as a CT scan or MRI, and we’re able to see that the inflammation has resolved,” Siegel notes.

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Managing Crohn’s Disease

Taking medications as prescribed can extend periods of remission, which can last for days to years, and reduce flare-ups, or the reappearance, of symptoms. But many with Crohn’s land in the hospital and need surgery, such as a small intestine resection procedure, where a section of diseased intestine is removed and the healthy intestine is then reattached.

“In spite of new medications, a majority of patients with Crohn’s disease are still expected to undergo surgery at some point,” says Anne Wheaton, epidemiologist at the Centers for Disease Control and Prevention who co-authored a recent report by the agency evaluating hospitalizations for Crohn’s disease between 2003 and 2013, the most recent decade of data available. Researchers found that even with new therapies that were expected to reduce hospitalizations, the rates of hospitalizations for those with a principal, or primary, diagnosis of Crohn’s did not change significantly during that period.

However, the rate of hospitalization for Crohn’s had been increasing prior to that 10-year stretch. “So it leveled off,” Wheaton says. For clinicians, it’s a silver lining signifying that perhaps treatment improvements will ultimately lead to a decrease in hospitalizations. Regarding surgeries to treat complications from Crohn’s, the proportion of hospitalizations during which a small bowel, or intestine, resection was performed decreased from 4.9 percent in 2003 to 3.9 percent in 2013; but other types of procedures remained stable.

“It’s frustrating that we’re not making a huge dent in changing the natural history of the disease or preventing hospitalizations,” Siegel says. “But I think we have the ability to do that with the treatments that are available.”

It’s key, experts say, that doctors closely monitor patients with Crohn’s and that patients get the treatments they need early on, rather than delaying medical attention when symptoms arise. By waiting too long, inflammation caused by Crohn’s can lead to irreversible damage to the intestine or bowels that medication can’t fix, requiring surgery.

Those with Crohn’s should be under the care of a doctor — typically a gastroenterologist — who has experience managing inflammatory bowel disease, primarily Crohn’s, Sinnott recommends.

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Experts stress open communication between patients and health providers, and that doctors should not just take patients on their word that they’re OK, but closely monitor the disease through other means as well. “Now we’re understanding that we really need to much more carefully monitor our patients with laboratory tests, colonoscopy, MRI scans, and make sure that the inflammation really is all gone — as opposed to just hoping that it’s all gone, because they’re feeling better,” Siegel says.

Just as all medications have side effects, experts note that surgery can lead to potentially serious complications. The better a patient can manage Crohn’s, the less surgery may be needed or the fewer procedures a patient is likely to have. In severe cases, a person who’s had multiple intestine resection surgeries can develop what’s called short gut syndrome, resulting in the body not properly absorbing nutrients. “That is a long-term concern in patients that they could have some absorption problems, depending on how much length of the colon or intestine you have to take out,” Sinnott says. “Patients can be at risk for dehydration and different types of electrolyte abnormalities … and malnutrition.”

Patients who lose parts of their colon because of inflammation may also need an ostomy, or bag for bowel movements, says Dr. Arnab Ray, head of gastroenterology at Ochner Medical Center in New Orleans. Clinicians note this is also sometimes done to give time for intestines to heal. Though such difficulties are not always avoidable, experts stress the importance of disease management to reduce complications and surgery, where possible.

In the worst case scenario, if inflammation goes unchecked it can progress to cancer in the intestinal tract, Ray says.

In addition to closely working with a specialist, getting symptoms treated early, taking medications — and letting clinicians know about how they’re working (or not), so adjustments can be made — lifestyle changes may also be helpful to manage Crohn’s.

Though experts say still relatively little is understood about environmental factors that may contribute to Crohn’s, they know smoking can exacerbate symptoms. “There is a very dramatic correlation between smoking and disease activity,” Ray says. For those who smoke and don’t see improvement from medications, that’s often the reason, he says. “Probably the single best thing they can do if they are smokers is to quit smoking. They [will] see really dramatic changes.”

Respiratory infections as well as infections of the intestines may cause Crohn’s to exacerbate symptoms, too. “Antibiotics may increase flare-ups. But on the other hand, if you’ve got an infection you might need to take antibiotics,” Wheaton says. “It’s very important to talk to your physician about it.” Ask, too, about alternatives to taking nonsteroidal anti-inflammatory drugs, or NSAIDs (such as aspirin or ibuprofen), which may also increase the risk of flare-ups, to manage pain. In addition, alcohol may worsen symptoms, so avoid drinking during flare-ups, and pay attention to individual triggers that can worsen your Crohn’s symptoms. “Crohn’s disease is not a response to any specific foods, but some individuals find that eating certain types of food (spicy food, for instance) increases their discomfort,” Wheaton says.

Genetics play a role in Crohn’s, and even when treatment protocol is followed, it’s not always possible to affect or control how the disease progresses. As a result, experts note that hospitalizations and surgery may be needed, even with proper management. But quality of life — like getting back to work and school — can be greatly improved through proper management.

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“When we treat the underlying inflammation, we see that their symptoms go away,” Siegel says. So abdominal pain goes away, they go to bathroom at more normal intervals, they get their energy back, they gain weight back that was lost due to the disease and they have a much better quality of life, he says. “What I like to say is [they] put Crohn’s disease in the background of their lives, such that it’s something that they don’t have to think about other than taking their medications.”

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How to Reduce the Chances of Being Hospitalized for Crohn?s Disease originally appeared on usnews.com