Ryan Stevens went to his gastroenterologist feeling fine. Actually, he felt more than fine; he felt better than he had in a long time. He was so convinced he was in the clear that he bet his doctor his scope test would yield nothing. Stevens was devastated, however, when the doctor came back with the news: his small bowel showed inflammation from active Crohn’s disease. After enjoying a yearlong remission, his dormant Crohn’s reared its ugly head once again.
“I naively thought getting my colon removed would be the ticket to not having to deal with the disease anymore,” said Stevens, who was diagnosed in 2009. Crohn’s disease is a type of inflammatory bowel disease (IBD), an autoimmune condition characterized by inflammation anywhere in the digestive tract. When Stevens removed his colon, the surgery did not remove the disease. It simply found a new area to occupy.
Remission for Crohn’s disease
Remission is possible for people living with Crohn’s disease. But there are different types of remission. Dr. Christina Ha, Clinical Assistant Professor at the Center for Inflammatory Bowel Diseases at UCLA, explains there are three different levels of remission. Clinical remission is when symptoms are no longer present in a patient. Endoscopic remission, also known as mucosal healing, is when the bowels themselves are healed and reveal no active disease after testing. Deep remission is when both the tissue and bowels are healed and symptoms are no longer present. Dr. Ha said deep remission is always the end goal when treating IBD. “We do know that the deeper the remission we can obtain and the more sustained the remission is, the less likely you are to flare again,” explained Dr. Ha.
Triggering a flare-up and next steps
So how does one go from remission to an extreme flare-up? It’s important to remember that Crohn’s disease is a chronic condition, so symptoms will recur over time and a person may go in and out of remission throughout their life. A flare-up can be triggered at any time—even when someone is in remission—due to a range of variables. The most important thing is to alert your doctor as soon as possible if you think you’re having a flare-up.
“It’s trying to do some detective work to figure out what was the trigger,” said Dr. Ha. One of the first questions a doctor will ask a patient is their adherence to therapy. Even when a patient is in deep remission or limited disease state, they must still follow their maintenance therapy by maintaining a healthy lifestyle and taking their prescribed medications. Patients who feel great with no symptoms are more likely to skip their medications or dosages. If medications aren’t taken properly, they won’t work. Other factors that can trigger a flare-up are travel, infections and stress, among others. Dr. Ha said it’s important for the doctor to understand the patient’s activity leading up to the flare to help narrow down the possible trigger(s). She also said it’s important to distinguish if the symptoms are actually active Crohn’s versus, for example, a stomach bug that mimics Crohn’s symptoms.
After getting a detailed recent patient history, several tests may be performed to understand the extent and severity of the flare-up. A patient might undergo bloodwork, stool tests, endoscopy/colonoscopy, or imaging tests, such as CT scan. Based on these results, recent events and symptoms, the doctor and patient should work together to figure out either an adjusted or new treatment plan.
Sometimes a patient is completely compliant without many life changes and they still spiral into a flare. So what gives? In these cases, the medications that previously worked maybe no longer do. The body can build tolerance or resistance to medications and produce antibodies against treatment. “The last thing we want to do during a flare is run in place,” said Dr. Ha, “So if a medication was working previously and it’s not working anymore, we have to figure out why.” Ha said doctors should also look at the dose regimen to see if it is too complicated or weight changes that can affect medication levels. The solution may be switching to a different type of medication or changing the dosage or adding an additional medication. However, explains Dr. Ha, the regimen that initially resulted in remission is the one doctors usually want to stick to unless evidences shows that regimen is no longer working.
The main takeaways
From a doctor’s perspective, Dr. Ha said her advice to patients is to know their baseline, adhere to therapies, communicate with their doctor, and don’t wait if something is wrong. She also recommends patients follow a healthy lifestyle and continue to show up for check-ins with their doctor even if they’re in a deep remission. “We don’t want our patients to disappear,” she said.
To help cope with his relapse, Stevens hit the pool—a place the avid swimmer and former triathlete finds comfort. Swimming was his main outlet for his frustration and anger. Stevens said the biggest lessons he has learned throughout his journey with Crohn’s is to find a good IBD specialist, follow treatment even when the report is clean, and be proactive. Despite several setbacks, he has never stopped fighting. Stevens has even attempted to swim across Lake Erie to raise awareness and money for IBD. He still hopes to achieve that goal. “Find an outlet, whatever it might be. Don’t let it stop you.”