Crohn’s disease is SO much more than than just a “pooping” disease. Yes, some of us poop more often than “normal people”, and others get chronically constipated. Shit happens. But there’s more to it than just the bowel aspects, as Crohn’s is an auto-immune 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. 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 GI’s, 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 trash bags too for those (literally) shitty days we have an urgent situation and cannot make it to a rest room in time. Toilet paper too for those long drives home when you just gotta pop a squat in the tree-line along the road.
3) Every single place we go, and I mean every, we IMMEDIATELY scope out the venue for where the rest rooms are.
4) We try our best to stay within a 5 minute distance to the bathroom.
5) The ER 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 Jose” to spaghetti, I very well could be perfectly fine eating it in October, because that’s how unpredictable this disease is. One week/month/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 NSAID. 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), chemo (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 and 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. As we are often needing blood draws, fluids for dehydration, iron transfusions, blood transfusion, IV medications, IV nutrition, etc.
There are many more than 10 ways we live differently than “normal” people. These are just some basic ones I can think of, based off of my own experiences. Feel free to leave feedback in the comments or email me at firstname.lastname@example.org