NO TWO PEOPLE WITH CROHN'S DISEASE ARE EXACTLY ALIKE
Crohn's disease affects everyone very differently. Sometimes, it doesn't seem right to call itthe same disease. Some patients remain mild, but most have the tendency to flare or worsen. And some are at high risk for future surgery and a difficult course, especially
- those younger than 40 years when Crohn's was diagnosed
- the teen who isn't growing or maturing
- those who smoke cigarettes
- those with deep ulcerations on endoscopy
- those with stricturing or penetrating disease
- those who have already had surgery
- those who can't get off of steroids
That means that those at increased risk and those who aren't responding rapidly to routine medications or to diet should be placed on one of the more effective medications to get their Crohn's under control. That also means the disease needs to be monitored frequently, looking for real progress.
Clinical symptoms provide a useful guide–particularly if a patient is not doing well. If he or she is having abdominal pain, waking at night to have a loose bowel movement or passing blood, that alone tells the physician that either the patient has an infection or active disease and treatment needs to be redirected. But in the patient who claims to doing well (where the disease may still be worsening inside), blood tests (often including a C-reactive protein) and / or a stool test for calprotectin may suggest the need for a change or suggest the need for a re-evaluation of the intestine with a pill camera, MRE or colonoscopy .
When patients are stable, especially while on milder medications, many patients can just be seen every 6 months. With the medicines where side effects have to be looked for more often, every 3-4 months is usually recommended. And when the disease doesn't seem to be under control, they may to be seem even more frequently. Not always for scopes and imaging studies but for a careful physical exam and lab work.
Using More Effective Medicines
Effective measures are needed in those not responding to their current therapy (medical, nutritional or a combination) or those in one of the high-risk categories. Otherwise, their Crohn's disease is likely to progress requiring surgery (the problem there is that surgery has its own set of side effects, including the frequent need for further surgery later).
The two main problems are
- many of the medications are expensive
- all medications have side effects
As a result, some patients and parents are reluctant to advance to the medicines that have been recommended. They are often concerned by the relatively rare side effects rather than the greater risk that they may have more and more problems with their Crohn's disease, afraid that they'll simply trade one problem for another. While those concerns are understandable and need to be considered in order for both the patient and doctor to actively share in the decision, treatment strategies must focus on the long-term needs of the patient and the life-long complications that can arise from Crohn's disease (not just their current symptoms) as well as the potential risks when using specific medications.
Further reading Bouguen G et al. Clin Gastroenterol Hepatol 2015; 13: 1042-50) proposes a "new paradigm for the management of Crohn's disease."
This article, as well as all others, was reviewed and edited by a member of our Medical Advisory Board.
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