4 Key Terms for the Newly Diagnosed

Being diagnosed with an inflammatory bowel disease is often an overwhelming experience. First, there are the basics of dealing with symptoms like pain, fatigue, a constant need to use the restroom, and weight loss, just to name a few.

Then there is learning about a number of different treatment options, many of which are administered in different ways and have a number of potential side effects. On top of all of this, there are many new words that will be said to you and about the disease or your symptoms.

For those who have been living with Crohn’s disease or ulcerative colitis for a long time, many of these terms become second nature, but for those who are dealing with this for the first time, it can seem like your doctor is speaking a whole new language. Here are a few key terms you might hear and a breakdown of what they mean.

What is inflammation?

Inflammation of the intestines. You are actually already very familiar with inflammation, even if you do not realize it.

Inflammation is a natural reaction by your body to protect itself. It is seen in the form of redness and swelling when you sprain your ankle or cut your finger. When your immune system starts fighting against something harmful, inflammation often occurs.

Usually, once the issue has been dealt with, the swelling and pain will go away; however, inflammation can become harmful itself when it becomes a chronic, or long-lasting, condition. This usually occurs when the immune system starts fighting against its own cells (See Autoimmune disease below).

So, if your doctor says you have inflammation in your intestines, what does that mean?It means that the lining of your intestine, either your small intestine (ileum) or large intestine (colon), has begun swelling due to an immune response. This swelling can lead to pain, poor absorption of nutrition and water, ulcers or open sores, and a narrowing of the intestine, which could stop digested food from being able to travel through the intestines.

When inflammation becomes a long-lasting condition, it can destroy some of the body’s cells, which can create permanent damage in the intestinal tract. This is why it is so important to treat the cause of the inflammation, rather than simply treating the symptoms such as pain and diarrhea.^{1, 2, 3, 4}

What does colitis mean?

Colitis simply refers to inflammation of the colon (large intestine). It is often confused with a diagnosis of ulcerative colitis, but they are actually not always the same thing. If you are diagnosed with ulcerative colitis, then that means you do have inflammation in the colon.

However, if you are told you have colitis, it does not necessarily mean you have been diagnosed with ulcerative colitis. (I know, it is confusing sometimes.) Inflammation of the colon can be caused by a number of different things: It can be due to Crohn’s disease, an allergic reaction, or even irritation from a foreign object.

If you are ever confused about being told you have “colitis,” be sure to ask your doctor to explain more about what your specific diagnosis is.²

What does it mean to have an autoimmune disorder?

Your immune system is meant to protect your body from disease and infection. An autoimmune disorder occurs when the body’s immune system starts attacking healthy cells in the body, rather than only harmful cells. This is what leads to harmful inflammation in parts of the body.

Unfortunately, we do not yet know what causes the immune system to react in this way. Outside of Crohn’s disease and ulcerative colitis, some other common autoimmune disorders are rheumatoid arthritis, multiple sclerosis, and lupus.⁵

What to know about an endoscopy or colonoscopy:

An endoscopy and a colonoscopy both refer to exams done to check for any issues in the digestive tract, including inflammation. For both exams, a long, flexible tube with a camera on the end is used to view the inside of the digestive tract. The difference is which part of the digestive tract is being checked.

An endoscopy or upper endoscopy begins at the mouth and can view the upper part of the digestive tract (mouth, esophagus, stomach, and small intestine).

A colonoscopy is done through the rectum and can view the lower part of the digestive tract (rectum, colon, and some of the small intestine). Both are usually done under sedation and often require bowel prep to clear out digested food.

A doctor is also able to perform some tests or take a biopsy during these procedures. One or both of these exams are often used in order to determine a diagnosis of inflammatory bowel diseases.^{6, 7}

Always ask your doctor to better explain terms to you

This is just a small sample of some of the new words you might hear when first diagnosed with an inflammatory bowel disease, so if there are other terms that you do not understand, be sure to ask your doctor to explain them to you. It is easy to forget that some words they use frequently may not be a part of everyone else’s vocabulary.