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.
Super-Soft Pajamas
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.)
I was trying to take a nice family photo. We’ll try again later…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.
It’s a little glowing giraffe!!!Ambien
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.
Internet Friends
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.
BRIAN SAYS HE WILL CATER THE PARTY!!!Online Shopping
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!)
Little Walks
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.
#seenonmylittlewalkAKA 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.
Fake it ’til you make it, right? THIS IS ASTRO.And Things That Make Crohn’s Disease Feel Even More Impossible
Onesies
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.
Social Media
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.
HANG OUT WITH YOUR FANGS OUT.Zippers
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.)
Ellie LOVED the nurse who came over to give me an IV.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.
Spicy Food
Looking at you, pad thai. You look good and you taste great, but you’re a real bitch to my insides.
Making Plans
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!
I will make plans with you…and then I will cancel them to do THIS.ANYTHING YOU’D LIKE TO ADD?
34 Responses
love to you! my brother wanted all the cuddles when he was flaring, but he had his colon removed almost two years ago. it was a hard choice, but seems to have worked for him.
The worst: when people who are not my doctor recommend a diet. Like suggesting I eat lots of fruits and veggies- are you trying to kill me??? I agree with the heating pad and cotonelle being the best! What else..when people compare IBS or a sensitive tummy to Crohn’s. Hate. So. Much.
So much wisdom in this post..i splurge on tp all the time, SO worth the extra cost. And the nightlight tip might be a game changer for me. I never thought of that, but it’s brilliant!! Thanks for the tip, I hate turing the light on full blast and waking myself up in the middle of the night! Good vibes being sent your way for this flare to leave ASAP!
An addition to the “don’t” list… CAFFEINE. When I am flaring even green tea will send me to the bathroom quickly. I don’t need any more trips than are already happening, thanks.
After reading your TP comment, I want to suggest one of those squirty bidet attachments. They’re cheap on Amazon and you can attach them yourself.Game changer! Feel better.
The worst feeling in the world is not wanting to make future plans for fear of not being able to keep them or in my case worry that it won’t work out. My anxiety can mess with my head and sometimes I see I have too many “fun” things planned for a random weekend 3 months from now and I’m panicking. I’m rsvp ing yes for the party!!!
Pajamas are the best. When my kids are sick, I always make sure to put them in their favorite pjs. But more importantly, APPLE CIDER MIMOSAS?! How did I not know this was a thing?
I would like an invitation to your “fuck you Crohn’s , don’t ever return” party. We could have those Runner’s World Tacos and Brian’s mimosas.
OMG those tacos…
Apple cider mimosas??? I’ll bring the baked pumpkin bread!!!
My friend just told me about onesies with trap doors and it has completely changed my perspective on onesies being impractical/I might purchase my first onesie: https://www.amazon.com/Lazy-One-Cheeks-Flapjacks-Onesie/dp/B00G96Y3I4/ref=cts_ap_1_vtp?_encoding=UTF8&pf_rd_m=ATVPDKIKX0DER&pf_rd_p=2601945442&pf_rd_r=P96HSRNRC6AV6KV98GVH&pd_rd_wg=2JOZ3&pf_rd_s=desktop-detail-softlines&pf_rd_t=40701&pd_rd_i=B00G96Y3I4&pd_rd_w=2CODh&pf_rd_i=desktop-detail-softlines&pd_rd_r=P96HSRNRC6AV6KV98GVH
I hope you feel better soon. This sounds so, so awful.
“Trap doors” LOLOLOL amazing.
….and I hit submit prematurely but sending you warm, healing vibes and KNOW that you will bounce back from this. You are an inspiration to many!
This is so appreciated! It’s been refreshing and comforting to hear your honest perspective, so thank you! I do not have Crohn’s, but I am dealing with other health issues and can relate to a lot of what you’re saying, especially feelings of isolation. So again, thank you for keeping this blog!!
I hate to be selfish, because your life sounds horrid right now, but I’m not sure I can wait a day/week/few weeks till you’re better so I can have apple cider mimosas. Do you have a recipe you can share??
Seriously…sending love.
x
Hahaha. Anything for you. And it’s just like a regular mimosa: 3/4 champagne, 1/4 apple cider (or whatever ratio you fancy). Throw in a cinnamon stick if you’re feeling extra fancy!
Watching netflix in the bathroom, golden syrup flapjacks (it’s all I can face in a flare), audiobooks, kittens, a husband happy to hold hour long cover stations through the bathroom door.
I am available for NYC mimosas between 11/9 and 12/9. We don’t need to make plans, just set out the bat signal and we’ll all come with bubbly.
PERFECT, come on over! BYO onesie.
Thinking about you and sending love. Ironically the Humira commercial came on as I was reading this. I’ll come to your party, bring on the mimosas.
I love reading your blog and am convinced in the non-creepiest of ways that we would be great friends IRL, and I absolutely love your honesty and openness about your health. I don’t have Crohns, but I do have IBS, and while it’s no where near as serious I have had times where it’s debilitating and I feel like I should just move to the bathroom and live there. PREACH on Cottenelle, my husband complains about the cost but I refuse to use anything else in the safety of my home bathroom. Also the Candy Crush franchise is my Two Dots (total cliche I know). Throughout 20 years of gastroenterologist visits, chasing diagnoses, and dealing with this shit (pun intended) I’ve finally realized that you gotta do you when it comes to your GI health and sometimes try to ignore everyone’s well-intentioned advice. You eat to a point where you know what works for you, physically and emotionally. I have so many words to say about all things intestinal but I’ve already written so much so mainly, fingers crossed for you to be on the up and up soon and in the meantime LOVE ON ALL THE DOGS.
LET’S BE GREAT FRIENDS IRL!
I am RSVP-ing YES!! You have no idea what a constant source of inspiration you have been my dear. At my lowest and most literally painful moments in bed and the bathroom, you have been there. You keep me company when I can’t bear to actually be around anyone, and you never fail to make me smile. I’m sending you bunches of warm, comfy, cramp free good vibes lady! Feel better soon <3
YES, BRING BACK THE COTTONELLE LABRADOR PUPPY!
And RSVP me on one of those apple cider mimosas. YUM!
Just THANK YOU. I am not alone in this mess. You are amazing to be so open and honest. It gives me strength. The comments people leave are also awesome! Love you all! Hugs.
…And agreed on the Humira ad. Like WTF?
LOVE this list. I personally can’t live without the moist flushable wipes – I buy them in a giant case from Costco and follow the rule of “one wipe per flush”. I’m also partial to the BEST toilet paper, although my brand of choice is Charmin. Agree with almost everything else you said – I hate the HUMIRA commercials, and they’re on every 2 seconds, although HUMIRA is my current drug of choice and it’s working well for me at the moment (with an increased dose and a side of aza). I believe smartphones are one of the greatest inventions for Crohn’s patients… so much easier than having to make sure you had a constant bathroom magazine stock back in the old days!
I feel like a total jerk for sending you the picture of the giraffe onesie now! I had wondered if onesies would be tough right now. Fingers crossed that you can enjoy it soon! I’ve been known to yell “F- you Humira” at the tv during the commercials due to the massive flare and abscess that ensued when it stopped working for me.
NO NO NO THE ONESIE IS AMAZING AND IT ARRIVED LAST NIGHT! I won’t wear it while I’m flaring but it will be ready and waiting as soon as I’m back up and running. (I’ll send you the picture — I modeled it for Ellie this morning and she went crazy, she loved it so much.) YOU ARE NOT A JERK I LOVE YOU.
I feel like Ellie is super hard to impress, so if she loved it it must be FABULOUS!
I have a Two Dots hint for you. When you run out of lives, set the clock on your phone a few hours ahead, then flip back into the app and voila, more lives! Just don’t forget to set your phone’s clock back to normal (which doesn’t take away the Two Dots lives you just got).
GAME CHANGER OMG.
I don’t have Crohns but have friends like you who are suffering with it. I hope with all the hope I can hope that they find a cure to this mess. In the meantime I hope that you feel better. I hate all pharma commercials. We have food allergies in my house and so the one that drives us crazy is the epi-pen commercials which make my son so nervous he can’t watch them. I agree gfy – your commercial is dumb.
Okay – who is Astro? He is sooo cute!
I would add to the “things that make it worse” list – people giving unsolicited advice. My husband has a chronic pain condition and can’t work. While I know people are trying to be helpful – stop suggesting jobs he could do because you can sit down, and yes he’s tried that drug too.