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The Many Faces of Crohn's Disease

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If you walked in a crowd, how many people could you pick out who have Crohn’s disease? It is one of those chronic conditions that are invisible. Most patients, including myself, have to deal with a broad range of emotions. There’s physical, mental and emotional exhaustion as well as being overwhelmed at times from dealing with severe pain, ER visits, seeing the GI or facing surgery.

Inflammatory bowel disease doesn’t discriminate, Children, young adults and even older adults can be affected and not even know it, or some will have symptoms and tests to determine how much the disease has affected their digestive system. There are times, though, when Crohn’s patients like myself have felt fine one second and terrible the next. Some folks often assume that we’re faking our symptoms and are judged as being lazy. This couldn’t be further from the truth.

It reminds me of “an uphill” climb. Some of us have a tough time getting use to the fact that we’re living with an incurable disease. Our lives consist of medications, many physician appointments, going for blood work, MRIs, CT scans, outpatient procedures or operations. Besides the digestive system complications, there are extra-intestinal manifestations such as arthritis, joint pain, bone, eyes and kidneys as well as anemia.

There are newer treatments out there, but it takes time and patience for it to kick in to get the desired results. There are side effects to watch out for such as difficulty breathing, dizziness and rash to name a few. Medications aren’t always perfect. What works for one person, may affect the other differently. The best thing we can do is research the treatment in question and then speak to the GI to see if the benefits outweigh the negative side effects.

Sometimes we have to “level off” to keep the flare-ups under control. lf our body feels exhausted, then we need to rest. I’ve always told myself that “the dishes and dust bunnies can wait” or “our well being comes first.” If we’re having a bad day due to feeling fed up with people who insist they have “cures” or recommendations on what will get rid of our stomach problems, it’s due to their lack of understanding and education. It’s tiring after a while trying to explain what IBD is and the severity of it.  Since most of us look generally well, folks will then assume we’re doing very well even though we’re in excruciating pain. When life throws us out of balance, Crohn’s survivors find a way to keep things in perspective.

We find that the disease has given us a new sense of empathy for others. It’s reminded us of never taking a “good day” for granted. Due to the many challenges we have to face, it has made us realize that we are stronger than we think. While flares can blindside us, all we can do is manage it to the best of our knowledge and have confidence that every comeback will be stronger than the next. This illness can show how resilient we really are.

To quote one of my favorite songs by Rachel Platten that exemplifies the strength many of us “crohnies” have:

“This is my fight song
Take back my life song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me”

Getty image by kiyanochka

Originally published: March 8, 2021
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