Most people with Crohn’s disease know what a glare feels like. Symptoms such as diarrhea, abdominal pain, nausea, and fatigue can be bothersome and embarrassing. So it is a relief when they are gone. But if you don’t have any symptoms, does that mean you’re in remission?
The answer is more complex than you might imagine. There are many types of calm. Ariella Holmer, MD, a gastroenterologist at New York University’s Center for Inflammatory Bowel Diseases Ariella Holmer, says the word “remission” tends to mean something different for patients than for their doctors.
“Patients focus on the symptoms, because that is the reason for the low quality of life and disability and why they come to see us in the first place,” she says.
But for doctors, being calm means your small and large intestines are healthy so you can avoid complications, she says. There can be a disconnect between symptoms and what’s going on in the digestive system.
“You can walk around feeling better and still have active disease that shows up when we do endoscopy or MRI,” she says.
She explains that it’s ultimately the inflammation in your gut that leads to complications.
Holmer says Crohn’s disease is often aggressive. If not treated the right way, Crohn’s disease can lead to ulcers and holes in the intestinal wall. You may develop strictures (narrow areas in the intestine), as well as fistulas (abnormal channels connecting the intestine to another organ).
These complications often need to be repaired with surgery. Long-term inflammation in the intestine also increases the risk of colon cancer.
Bottom line: Even if you don’t have symptoms, you’ll need to get tested to see if your disease is still active.
What are the types of forgiveness?
The definition of Crohn’s disease remission has changed over the past few years. Most IBD experts use at least four different terms to describe different types of remission.
Clinical remission. This is something you can determine for yourself. This simply means that you do not have any noticeable symptoms.
Biochemical remission. This means that you are in remission according to lab tests, specifically blood tests and stool tests. A gastroenterologist should perform blood tests to monitor the level of C-reactive protein, an inflammatory substance, as well as stool tests to check the level of another inflammatory substance called calprotectin. Ideally, both markers should be low in order to be in biochemical remission.
Laparoscopic remission. Endoscopic remission means that when you get a lower endoscopy (colonoscopy or sigmoidoscopy), your doctor sees no signs of inflammation, ulcers, or bleeding. This is a very good sign that your disease is under control.
The International Organization for the Study of IBD recommends that clinicians use endoscopic remission as a long-term treatment goal for Crohn’s disease. In other words, the fact that you feel better is not enough. Doctors should continue to adjust your treatment until your gut shows evidence that you really are better.
During the endoscopy, your doctor will also likely take small samples (biopsies) of your bowel tissue for analysis. If there is no inflammation that can be seen under a microscope, it is said that you are present Histological remission. (Histology refers to the microscopic examination of tissues.)
deep remission. If you meet the definitions for both endoscopic and clinical remission, congratulations. You are in deep remission. Research has found that people with Crohn’s disease who reach deep remission soon after their diagnosis and stay there for at least a year are less likely to develop advanced disease and later complications.
How to avoid setbacks
There is no cure for Crohn’s disease. People who suffer from it tend to go through periods of remission with flares from time to time. Reaching deep calm should increase the chances that you will remain in a state of calm for longer – possibly many years. Holmer says there are other things that also affect what your future with Crohn’s might look like.
These include how old you were when you were diagnosed. People diagnosed after age 30 usually fare better than those who have had Crohn’s disease since childhood. It’s also important to what extent your gut is affected by Crohn’s disease (less is better).
It also makes a difference whether you have complications such as ulcers, strictures or fistulas. If you have had it before, you are at risk of further complications in the future.
There is no way to guarantee that you will remain calm. But you can turn the odds in your favour. Take your medications as directed by your doctor. And see your gastroenterologist regularly – even if you feel better.
“You should always stay in touch with your doctor and continue to monitor your disease with biochemical and endoscopic tests,” Holmer says.
Some patients think, ‘Okay, I’ve been in remission for 5 years, so I can stop seeing my doctor. “These are the ones who end up relapsing.”
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