Having Crohn’s disease is never easy. But fortunately, after 24 years with this dumb disease, I’ve figured out a few things that make flare-ups more tolerable, plus a few things that make it less bearable. Like for example, you would think that “comfy onesies” would be on the “hell yes” list, but twist, they’re not! Here are a few more not-so-expert firsthand insights…
Things That Make Having Crohn’s Disease Easier
A Heating Pad
Does it actually help? Probably not. But sometimes it feels nice to have a heating pack on my stomach while I’m in bed. (Ellie really likes it, too.) I use this one, which has six heat settings and gets really toasty.
I never understood the power of good pajamas until my mom bought me a cute pajama set when I was sick a few years ago. When you’re sick, it helps to find anything that’ll make you happy. For me, that means a matching pajama top and bottom. (Gap makes really soft PJs, which I’m loving right now.)
The Best Slippers Ever
I actually get sad when I have to leave the house or go to bed because it means I have to take my slippers off. These make my feet very happy.
The Softest Toilet Paper Money Can Buy
Don’t be afraid to splurge here, people. You’re going to be using it a lot. Don’t skimp on the cheap public restroom-style stuff. I like Cottonelle best, but I wish they would bring back the little puppy on the packaging.
A Night Light in the Bathroom
I tend to get up a lot during the night to use the bathroom, and I hate having to turn on the bright bathroom light (and, with it, the super loud-because-it’s-broken fan). So I bought a night light, which keeps the bathroom just light enough to be able to find the toilet. It’s also cute. Probably because it’s made for children, but whatever.
I hate to turn to drugs, but after several days in a row of not being able to sleep and getting up constantly, Ambien helps me actually sleep through the night, no matter what’s happening in my intestines. It’s very helpful to actually wake up in the morning feeling somewhat refreshed.
Thank you for being here, saying nice things, and sticking around. I’m going to have a party when I’m better and I’ll make us all apple cider mimosas! RSVP IN THE COMMENTS.
Usually in the form of impractical decorative seasonal throw pillows from various clearance sections. We have so many throw pillows in our apartment, and I think Brian secretly threw out half of them when we moved. Online shopping is fun because deliveries can really perk up your day — and you can do it all from the comfort of your bathroom! (And it doesn’t have to be big stuff — sometimes I’ll just order new highlighters or pens, because even that will make me smile in a very affordable way!)
Even though I try to resist them, going for a short walk and getting fresh air can have a massive impact on my perspective. Case in point: Monday night. My day had been so miserable, but walking Ellie home from school brought me back to life.
AKA the best game ever. I’m addicted and wish I had infinite lives. (I refuse to fall prey to in-app purchases, though.) Two Dots comes in handy in the bathroom, yes, but also when I’m riding the ferry and need a distraction so I’m not just thinking about my stomach and how there’s no bathroom on board.
A Positive Attitude
As hard as it may be to maintain, the mind-body connection is strong. When my head is in a better place, my body is more likely to follow suit. It’s a work in progress.
And Things That Make Crohn’s Disease Feel Even More Impossible
I know what you’re thinking: “But Ali, you love onesies!” And you’re right! But you’re also wrong. Because a Crohn’s flare means many an unpredictable and urgent run for the bathroom. There’s simply no time to unzip and disrobe. So while onesies are cozy and adorable, they’re simply not practical mid-flare.
Particularly on weekend mornings. Nothing makes me feel worse or sadder than seeing everyone out crushing their races and workouts while I’m stuck on the couch or in the bathroom. (How many times can I say “bathroom” in this post? Ugh.) Social media can be a wonderful way to connect with people, but when life feels tough, it can also make it feel way worse.
See above re: onesies. No time.
Anything Touching My Stomach
Think jeans, high waistbands, or basically anything that resembles work-appropriate attire. I’ve been living in loose dresses at the office and low-riding, baggy sweatpants at home.
People Asking What Medicine I’m Taking
I know you mean well. I know you care. I know you want to know what’s going on. But my medical history is so long and complicated and exhaustive, and I just don’t feel like getting into it most of the time. If I had $10 for every time someone in the past week asked, “Are you still doing that clinical trial?” I would have like…$20. At least. I know people are well-intentioned, I just hate talking about it and getting into it because it’s a lot. (But for everyone who is asking, the clinical trial ended in April, so I’ve been off that medicine since then. The drug is now going through the finalizing and FDA approval process. There was no “compassionate extension” program I could enroll in, so I couldn’t keep getting the drug. Trust me, I tried. When I see my doctor next week, we will likely discuss two options — Stelara and Entyvio — and go from there. I’ll keep you posted.)
Commercials for Humira
Or any other Crohn’s-related medication that promises to make people feel better. GFY. I tried you already. You didn’t work for me. And your commercial is dumb.
Looking at you, pad thai. You look good and you taste great, but you’re a real bitch to my insides.
I hate making plans because, even though I hope I’ll be better in time to see them through, I know there’s a big chance I’m eventually going to have to reach out and cancel on you. And I hate having to do that. So I spare myself the potential embarrassment and sadness and I just avoid making plans in general. We can hang out when I’m better, though!
ANYTHING YOU’D LIKE TO ADD?