‘No, It’s Not the Same as IBS’: What I Wish Others Knew About Inflammatory Bowel Disease

For the millionth time … just kidding, kind of. If there is one misconception I hear most often when disclosing my ulcerative colitis (UC) to someone, it’s that they “can relate, since I have IBS.” On the surface, inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) are similar in symptom presentation. They both impact the GI tract. However, there’s one big difference: inflammatory bowel disease is a chronic inflammatory condition that can cause harm to the GI tract, and IBS is a syndrome that comprises a handful of symptoms that don’t cause harm to the GI tract. So while the symptoms of each may look similar, IBD is chronic and often calls for a serious, ongoing treatment plan (but IBS can be difficult as well, so if you’re reading this and live with IBS, I totally feel for you!).

• What is Ulcerative Colitis?

It remains important for loved ones of people living with IBD to understand how they can best support that person. One way to do that is to learn the truths about life with IBD. The “easiest” one to see and acknowledge is the bathroom aspect, which, yes, is probably the most known part of IBD. However, it’s not the whole story. In fact, there are four other things everyone should know about life with IBD:

1.   There are two main types of IBD.

Crohn’s disease and UC are the most commonly discussed forms of IBD, and each can also manifest in smaller “subtypes.” Crohn’s can show up in any part of the GI tract, from the mouth all the way down to the rectum. UC, however, stays within the large intestine. I know what you’re thinking – what if Crohn’s is only in the large intestine? How do you know it’s not UC? I thought the same thing, and one common distinction is that healthy spots may appear in between inflammation with Crohn’s. With UC, it’s often continuous inflammation without any healthy spots. 

1.   You live with it forever.

I’ve lost track of the number of people who have told me they “got rid of” or “cured” their UC, only to end up flaring months or years later. There is no known cure for IBD. While things like surgery can remove the inflamed areas for some, this isn’t a cure; it simply removes the diseased areas. This is why it’s paramount for those living with IBD to continue their medication as prescribed. I wish remission for everyone, but remission is just that: remission. People achieve remission from proper, ongoing treatment and disease management.

1.   No, it’s not just about diet.

“Have you tried giving up _____?” Why yes, yes I have. I’ve also eaten Halloween candy and felt fine. While a healthy diet is a big part of condition management for many people, it’s not the only solution. I know some who don’t take any medications for IBD and maintain remission through a squeaky clean nutrition plan. I know other people who tried that and ended up in the hospital. I know people who eat well and also take medication (like me). I know people who opt to not do anything for management and still have good days. Everyone is different.

1.   It is indeed an “invisible illness.”

This sentiment reminds me to be kind to others, because you really don’t know what they’re going through. There have been many times where I’ve gone to a social event and have been in agonizing gut pain the entire time. But I wanted to be there, so I made it work around bathroom breaks and “stepping outside.” It wasn’t a flareup; it was simply a bad evening that could or could not be related to my UC. The same thing is true for someone who may be going to the coffee shop for the very first time in months because of IBD. Just because someone doesn’t “look sick” doesn’t mean they aren’t feeling crummy. 

What would you add to the list?