Talking about inflammatory bowel disease (IBD) with people who don’t have it is hard. It can get even harder when you speak to people who have some vague — but often incomplete or inaccurate — idea of what it’s about.
For the record, inflammatory bowel disease is an umbrella term for different inflammatory disease that affect the gastrointestinal tract, including Crohn’s disease and ulcerative colitis. FYI: It is not at all the same thing as IBS, or irritable bowel syndrome, which is a condition that can cause some similar symptoms but not because of systemic inflammation from an overactive immune system.
I don’t know exactly why — maybe it’s because some GI issues are very common; everyone gets diarrhea and stomach upset from time to time, right? — but there are so many misconceptions out there about what IBD is and is not, how it affects patients like me, and what it is really like to live with this chronic disease for the rest of your life.
When my Crohn’s disease comes up in conversation, people often come with some preconceived notions of what IBD is. Many people are familiar with IBD as a “bathroom disease,” but if you are an IBD patient you know all too well that it is way more than just that.
For example, there’s a big overlap between IBD and arthritis. IBD commonly occurs in people with certain kinds of arthritis — in particular, those in the spondyloarthritis family, such as axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA). People with IBD are also more likely to develop a related form of arthritis, which is known as enteropathic arthritis. Estimates vary depending on which studies you look at, but arthritis has been estimated to occur in anywhere from 6 to 46 percent of people with IBD, according to UpToDate. (That’s what happened to me. About six months after I was diagnosed with Crohn’s nearly five years ago, I got the dual diagnosis of ankylosing spondylitis.)
When people react to my having Crohn’s, I often hear things like, “Oh yeah, it’s just that you can’t eat some foods, right? What are those again?” As chronic illness patients, we want people to be aware of what living with IBD entails, yet it becomes exhausting to constantly educate others on our disease and its related experiences.
That’s why we curated these insights from the Global Healthy Living Foundation’s IBD Patient Council, a group of people living with Crohn’s disease and ulcerative colitis who help create and review our educational content on this topic. We hope they can help others get a fuller picture of how having IBD affects patients’ lives.
More Than a Bathroom Disease
1. “IBD is so much more than a bathroom disease. It really affects your whole body and entire life. People with IBD often are working twice as hard to accomplish the same things that others do. Often, we use up all of our energy more quickly, so we have to balance our schedules even more. Sometimes we have to decide which activity is more important because our body will not let us do both.”
2. “IBD doesn’t just affect the digestive system. While most of my symptoms are related to my GI tract, I wish people knew that IBD also affects my energy level and my ability to focus, and also has the potential to affect the rest of my body, from my eyes to my joints.”
Managing Medications Can be Hard
3. “I want people to understand that IBD is a chronic disease that requires a lifetime of medications that can have all sorts of side effects. I wish people understood that the disease is a really big deal and a very difficult diagnosis to carry.”
4. “Managing prescriptions is hard. We have a normal pharmacy and a specialty pharmacy to order medications from. There are so many moving parts, and it is way more complicated to manage than people know.”
Invisible Illness Is Real
5. “I don’t always seem sick, but IBD affects me every day. Whether I’m in pain or just trying to prevent future pain, I constantly think about the nature of my disease. I wish people understood that just because people don’t look sick, it doesn’t mean that they aren’t sick.”
We Are Not Lazy
6. “Fatigue with IBD is UNREAL. Even in remission, many IBD patients battle severe fatigue on a daily basis. We are not lazy, nor are we just ‘tired.’ This kind of exhaustion cannot be fixed by sleep or rest, or by anything really. Even the most basic things can be too tiring for us, like showering, doing laundry, getting groceries, cleaning your home. We have to deliberately plan out when we’ll do these things, because chances are we won’t have the energy to do them all in the same day, especially if we work.”
7. “The physical exhaustion from a busy day or traveling will often result in GI pain, which then makes me more fatigued. It becomes a vicious cycle.”
IBD Is Lifelong
8. “There is no cure for IBD. Many people with IBD will have to be on medication for life, otherwise the disease will flare again. Remission does not equal a cure.”
Advice Can Get Frustrating
9. “Stop giving recommendations based on what your family or friend find to be helpful. IBD is different for everyone.”
10. “People have this idea of what IBD looks like because of someone they know with IBD. I wish people knew that everyone approaches IBD differently and that means that medications and diet doesn’t work the same for everyone.”
Navigating Food Is Different for Each Person
11. “IBD cannot be controlled just by diet.”
12. “There isn’t just one diet that works for everyone, it takes a ton of trial and error to figure out what works.”
13. “My diet and what foods feel good can change often. I wish people understood it doesn’t mean it’s not as serious as an allergy or not important.”
Explaining IBD Can Be Exhausting
14. “I don’t want to explain it every time someone new is in the room, I wish it was just understood.”
Become a Patient Advocate for IBD
If you want to help raise awareness for what it’s like to live with IBD and improve health care access for people with chronic illness, become a patient advocate with our 50-State Network. Learn more and sign up here.
CDC – What Is Inflammatory Bowel Disease (IBD)? – Inflammatory Bowel Disease – Division of Population Health. Centers for Disease Control and Prevention. https://www.cdc.gov/ibd/what-is-IBD.htm. Published March 22, 2018.
Clinical Manifestations and Diagnosis of Arthritis Associated with Inflammatory Bowel Disease and Other Gastrointestinal Diseases. UpToDate. https://www.uptodate.com/contents/clinical-manifestations-and-diagnosis-of-arthritis-associated-with-inflammatory-bowel-disease-and-other-gastrointestinal-diseases.
IBS vs IBD. Crohn’s & Colitis Foundation. https://www.crohnscolitisfoundation.org/what-is-ibd/ibs-vs-ibd.