Crohn's Disease: A Patients Definition

I would imagine there are some readers here who are not familiar with Crohn's. If you search for the  definition it is, a disease causing chronic inflammation throughout the lining of the digestive tract. It doesn't sound too bad, does it?

That's Google's definition, here is mine: A chronic disease which there is no cure, that causes severe stomach cramps similar to labor pains. Constant diarrhea and food anxiety. No specific treatment plans. Hemorrhoids. Diaper rash. Low energy levels. Anxiety of having an accident in a public place because you can't control bowel movements. Theinous task of needing to wake up in the middle of the night to replace the bedsheets because you had an accident. Handfuls of drugs morning, noon and night with terrifying side effects. Tears in doctors offices because you are fed up with not achieving relief from treatment. Hospital stays away from your loved ones for extended periods of times and never knowing when your next surgery may be on the horizon.

That's just the short version.  I haven't even touched the side effects that the medicines used to treat CD cause.

A lot of time, unless a patient is in a hospital gown, laying in a hospital bed, you may not even know a person suffers with Crohn's. But I can tell you, the worst thing you can ever possibly say to someone with an invisible illness is, "but you don't look sick." I can tell you that by the time you have gotten to the word "don't," in that sentence, we have already turned 50 shades of red and are silently cussing you out. Or in some cases, not-so-silently.

People suffering from invisible illnesses deal with this situation of disbelief all time. We get it from co-workers, friends, family members, spouses, even DOCTORS and it is one of the things that make us feel more alone than ever in this fight. We aren't asking for sympathy, we simply want to be understood.

The second worst phrase we hear from non-sufferers that will send steam out of our ears is, "it could be worse." Seriously... WTF? IT COULD ALSO BE A LOT BETTER! Thanks for the words of encouragement, I'm going to go back to feeling like I'm having contractions in the 19th hour of child labor with no epidural.

Never. Say. Those. Phrases.

Repeat after me: NEVER. SAY. THOSE. PHRASES.

As Crohn's patients, we walk a lot of this turf uncharted and solely on our own. There is no one treatment plan than can help everyone who battles Crohn's. A lot of people can't sympathize with the daily struggles we face. Doctors still don't have every detail of this disease nailed down. What foods work for some people to eat may cause a flare for another. Medicine that once worked for a patient, loses efficacy. Diets play an effective role in the disease, but which one? Paleo? Gluten free? Keto?

If I could sum up this definition in one word, it would be "frustrating."



This particular disease, as I'm sure many do, have a lot learning curves for both patients and the people surrounding them. While a lot of this disease is lonely and aggravating, it is been such a pleasure being able to socialize and engage with other patients and caregivers on social media. If I can help one person see the upside of this disease by writing this blog, it will make me a proud girl.




All my best,
Brooke