10 Ways People With Crohn's Disease Live Differently Than You
Crohn’s disease is so much more than just a “pooping” disease. Yes, some of us poop more often than “normal people,” and others get chronically constipated. Shit happens… literally. But there’s so much more to it than just the bowel aspects, as Crohn’s is an autoimmune disease. Our immune systems literally attack our bodies, making us more prone to developing other illnesses, diseases, infections, syndromes, disorders, and so on and so forth. This includes things such as anemia, arthritis, oral issues, skin issues, blood disorders, clotting issues, infertility (temporary and permanent), paralysis or loss of limb function, extreme weight loss (or gain) and so so so much more.
Here are some basic ways we live our lives different than “normal people.”
1. We see doctors. A lot. Like, once a month, if not more. And it’s more than just a quick pop in with our primary care doctors, although we do that too. We see our GIs, blood specialists, pain management (because who really wants to either live in pain or become addicted to pain medications), ortho, physical therapists, dermatologists, infectious disease, nutritionists, surgeons… you get the point. Our insurance companies probably hate us.
2. We keep a spare set of clothing (undies and all) in our cars… a couple of trash bags too for those (literally) shitty days we have an urgent situation and cannot make it to a restroom in time. Toilet paper too, for those long drives home and you just gotta pop a squat in the trees along the road.
3. Every single place we go, and I mean every place, we immediately scope out the venue for where the restrooms are.
4. We try our best to stay within a five-minute distance to the bathroom. A lot of us do not have the ability to hold it for very long. Once the urge hits us, we have to go, and we have to go now. There’s almost always no way to continue the conversation and just wait for it to finish. It’s a, “I truly hate to end this conversation, but would you please excuse me for a moment.” Often, if the person we’re talking to doesn’t know us and know about our disease, they find us rude — which is another story and issue in and of itself.
5. The emergency room staff knows us by name when we come through the doors.
6. We watch what we eat. Constantly. Even if we absolutely love something, we steer clear of it. And while in September I may have said “no way, José” to spaghetti, I very well could be perfectly fine eating it in October, because that’s how unpredictable this disease is. One week, month or year something may bother us, and the next it doesn’t affect us at all.
7. We have our good days, where we feel invincible… on top of the world, even. But then we have our bad days…and our bad days are bad days. Call out of work, can’t get out of bed, can’t eat, can hardly drink, screaming and crying in pain kind of bad.
8. We fake smiles daily. When asked “how are you?” We just smile and say “I’m good! How are you?” Even though our pain level is about a 4 or 5, but we don’t think anyone actually cares to hear “well, I’m in a great deal of pain; I want to be in my bed, not socializing and hardly existing.”
9. We can’t take ibuprofen, Motrin, or any other nonsteroidal anti-inflammatory drugs (NSAIDs). Our over the counter pain relief option is basically Tylenol. And that’s it. Or our doctors will prescribe a Tylenol-based narcotic. NSAIDs cause ulcers. Ulcers cause pain, and flares, and many other issues. And then, our “management” or “maintenance” medications are pills (which can cause cancer), chemotherapy (which kills cancer) or giving ourselves shots.
10. We often get accused of being “junkies” or “druggies,” as some of us are extremely thin (due to our disease; it isn’t by choice and it’s a struggle to gain the weight back), and have multiple IV scars in our arms, hands and feet — we are often needing blood draws, fluids for dehydration, iron transfusions, blood transfusion, IV medications, IV nutrition, etc. These accusations often come from doctors, nurses, strangers on the streets, cashiers at the stores, pharmacists that noticed we’re picking up yet another 20-day supply of Percocet, because we’re dealing with another flare, and Tylenol just does not cut it anymore.
There are many more than 10 ways we live differently than “normal” people. These are just some basic ones I can think of, based on my own experiences. Every single day is a different day, a different struggle, a different obstacle. But despite all of the daily stressors, struggles and obstacles, each day is also another day I get the chance to spread awareness, spread positivity, inspire others to keep pushing, to fight back against this disease, to choose life.
Follow this journey on the author’s blog.
Photo by Artur Nasyrov on Unsplash