By Randy Longman, MD, as told to Marijke Vroomen Durning, RN
I’ve been working with patients with inflammatory bowel disease (IBD), which includes Crohn’s disease, for about 15 years now. Treating patients with chronic illnesses like Crohn’s disease can be challenging, but it’s also very rewarding. As their doctor, I have a unique opportunity to develop long-term relationships with them. I’m there during difficult times to provide medical assistance, care, and support.
It’s also an exciting time to be in the field of treating Crohn’s disease because of ongoing research and new treatment options that can be life-changing for my patients. With so much going on, I don’t want my patients to lose hope because we don’t know what is around the corner. There are so many more medicines and combinations of therapies that sometimes, the next medicine can be the right one for them.
Diagnosis and Treatment Improved Over the Years
Treatment for Crohn’s disease has changed significantly since I began practicing. Early on, we only had oral medicines, such as steroids, or corticosteroids, to offer our patients. These drugs can certainly be helpful in some situations. They reduce inflammation in the gut, especially during exacerbations, or flare-ups. But these drugs also can have serious side effects. For example, long-term steroid treatment can cause cataracts and weaker bones, and it can put patients at higher risk of getting infections. So we don’t want patients to take these drugs too often or over extended periods.
Immunomodulatory medicines were our other option. They are good medicines too, and they help many patients. The most common ones used to treat Crohn’s disease include:Azathioprine (Azasan, Imuran) Mercaptopurine (Purinethol, Purixan) Methotrexate (Trexall)
These drugs reduce inflammation by modifying how your immune system reacts, decreasing symptoms. But they can also have serious side effects, such as nausea, fever, and fatigue, so some people can’t take them.
But now, there’s even more hope. Thanks to research and development, Crohn’s disease treatment has gone beyond steroids and immunomodulatory medicines. Now, we have biologic therapies to offer our Crohn’s disease patients. These are medications that target specific inflammatory molecules in the body. In my opinion, they have transformed the natural history of this disease.
In 1998, the FDA approved the anti-TNF alpha-targeting medication infliximab to treat Crohn’s disease. Over the past 10 to 15 years, we’ve had many other anti-TNF alpha-targeting medicines come into the space, as well as other drugs that target certain enzymes and their pathways. These new medications provide new options for patients who have not had success with traditional treatments.
But Crohn’s Disease Treatments Don’t Stop There
Historically, we treated Crohn’s disease patients by giving one treatment at a time, adjusting or changing the medication if they didn’t respond well. But we’ve learned a lot about combining medicines to make them work better. This gives us yet another approach to helping our patients.
Testing has improved, too. We can now find out how well a patient responds to treatment, not just from symptom relief, but we can now do blood tests for therapeutic drug monitoring (TDM). Measuring drug levels in the blood allows us to actively check on our patients’ progress, making the most of their care.
We’ve also come up with new diagnostic technologies, including genetic and molecular blood markers. These markers tell us the type of intestinal inflammation and subtypes of Crohn’s disease the patient has. This knowledge helps us design personalized therapies for patients.
Recognition Is Coming Earlier
The sooner patients with Crohn’s disease are treated, the better, and earlier recognition and diagnosis play a big role in this. Organizations like the Crohn’s and Colitis Foundation and others have done tremendous work raising awareness of IBD, including Crohn’s disease. Their outreach encourages people to talk about symptoms even if they are embarrassing or difficult to talk about. Allowing and encouraging people to speak about symptoms like belly pain, diarrhea, or even rectal bleeding means they may be diagnosed earlier if they have IBD.
A Team Approach Improves Crohn’s Disease Care
Obviously, the primary focus must be identifying the right medications to help manage the intestinal or systemic inflammation from Crohn’s disease. But even once the inflammation is controlled, there can still be uncomfortable intestinal symptoms like gas, bloating, and diarrhea.
Malnutrition in Crohn’s disease is also a real problem. Because of the inflammation in the intestine, nutrients aren’t easily absorbed, especially vitamins. Children with Crohn’s disease could have delayed growth as well.
One of the ways that we approach this at our center is by having an IBD-focused dietitian. Having dietitians who know about nutritional issues that come with IBD can make a huge difference in a patient’s well-being.
Health care professionals to address the psychosocial issues related to living with Crohn’s disease are also essential. These issues can affect anyone at any age, but some groups may be at higher risk. Crohn’s disease symptoms frequently start in late adolescence and early adulthood. This can be a very stressful time for most adolescents in high school or college adjusting to life with a chronic illness, so being sensitive and supportive is critical. In our practice, and at many IBD centers, a social worker is frequently on the team. As a result, they can screen for challenges our patients may have and provide resources and support.
It’s also important to recognize that even for adults, this can be a very stressful disease. Not only are there medical issues, but there are social and professional issues, and a financial burden comes with treatments. So even if you do have insurance, and even good insurance, there are always significant medical and financial issues if you have a chronic illness.
I think there are still several unmet needs when working with people with Crohn’s. First, a lot of research is looking into identifying the disease earlier, especially among people with a family history of it. Another major focal point is knowing which medicine to select for which patient, based on algorithms, how severe the disease is at that time, and other things such as medication side effects.
We also need to look at areas of active research into the complications related to Crohn’s disease. For example, it can cause a fistula, an abnormal opening in the colon, and this can be very aggressive. Crohn’s disease can also cause fibrosis, thickening and tissue scarring in the colon, which can result in a stricture or blockage. This major complication of Crohn’s disease can lead to the need for surgery.
We don’t yet officially have medicines that directly target fibrosis or stricturing. But I do anticipate that over the next 5 to 10 years, we will have medicines to specifically target this and reduce the stricturing burden that comes with Crohn’s disease.
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