Tips For Explaining IBD

Inflammatory bowel disease (IBD) can be difficult to understand, let alone explain to other people. Not to mention, there tends to be a lot of confusion among the general public about what exactly IBD is.

Some people have preconceived notions that IBD is the same as irritable bowel syndrome (IBS).

Other people will say that they had colitis once because they suffered from food poisoning or had an infection that resulted in an inflamed colon. {Side note: the term colitis means inflammation in the colon. Ulcerative colitis is a form of inflammatory bowel disease that is chronic and vastly more serious}.

Regardless of other people’s knowledge, I always like to have some kind of game plan on how to explain my disease to others if the situation should arise.

Inflammatory bowel disease (IBD) is an umbrella term

The first thing I do is see if the person or people I am speaking to have ever heard the terms inflammatory bowel disease, Crohn’s disease, or ulcerative colitis. If they have, I am sure to clarify that inflammatory bowel disease (IBD) is an umbrella term that encompasses both Crohn’s disease and ulcerative colitis.

The immune systems role in IBD

I then go on to share how inflammatory bowel disease is impacted by the immune system. Therefore, it has the ability to cause problems throughout a person’s entire body (aka extraintestinal manifestations.)

When speaking about the immune system, I use it as a time to express how serious Crohn’s disease and ulcerative colitis can be. I also try to draw a brief contrast between IBD and IBS during this part of the conversation.

Medications for inflammatory bowel disease

Following that, I give examples of some of the medications used to treat IBD. I usually begin with medications that I have seen advertisements for, like Humira, so the person or people I am speaking to has an idea of the type of medications needed to manage inflammatory bowel disease.

I share that a drug like Humira is called a biologic and is classified as a type of chemotherapy. I am also sure to mention that other immunosuppressive medications are used to help control the disease.

When I speak about the medications, I hone in on how strong they are because I want to do my best to convey the seriousness of inflammatory bowel disease.

Surgeries for Crohn's or ulcerative colitis

If the person or people I am speaking to doesn’t know much about my story, but still seems interested in learning, I share a bit about some of the surgeries that come with an IBD diagnosis. I try to talk about what exactly a j-pouch is, what it means to have a revision, and why an ostomy is needed for some IBD patients.

I also include how complications often arise since it is such a complex disease and typically impacts a “dirty” part of the body. This allows someone to grasp the fact that treatment options for inflammatory bowel disease are hardly cut and dry.

There is so much to understand and learn about IBD

If you are someone who has had difficulty explaining what exactly Crohn’s disease or ulcerative colitis is to other people, please know you are not alone. As I mentioned at the beginning of this article, there is so much to understand and learn about this disease. All of that takes time and often, a lot of trial and error.

Understanding how unique your disease is to you can also be a frustrating battle. So, trying to form coherent sentences to other people while trying to grasp it all in your own mind can be difficult.

How has it been for you if you share your disease with other people? If you shy away from sharing, would you mind telling us why? Have you found it difficult to find the right words to help convey what IBD actually is? Do you notice people care when you do try to explain your disease? Please share your experiences in the comments below!