What Crohn's Disease Feels Like

Date: October 3, 2016 at 7:28 am- by Ali- Comment(s): 23

The other day, a friend asked me a seemingly simple question: “I know what Crohn’s disease is,” she said, “but what does it actually feel like?”

So first, let’s get the disclaimer out of the way: I’m Ali. I was diagnosed with Crohn’s disease when I was 7 years old and have lived with it in varying states. Sometimes it’s totally in remission, and other times it knocks me out of the game entirely. I am in no way here to give you medical advice or to convince you that what I’m doing is the right way to live with Crohn’s. I’m just here to talk about my personal experiences in a very conversational, non-expert way. Any medical questions should be directed to your doctor, not me. I can, however, answer questions about where to find every single bathroom in Central Park or which items have recently made the transition from Lululemon’s full price section to its discounted (but final sale!) “We Made Too Much” arena. Cool? Cool. 

The best little nurse.

The best little nurse.

Crohn’s disease is a chronic illness that, for me, comes and goes, often without warning. My disease seems to be less regulated by what I eat or drink and more dictated by my emotional well-being. (Case in point: Every time I experience a flare, it’s when I’m going through a major life change, such as when I went off to college, when I studied abroad, when I got my first post-college job, when I was later promoted in a big way at that job, and when I was wedding planning.) Stress is a major trigger for me. (So you would think I’d be an expert at managing my stress by now, right? Not quite. But I’m always working on it.)

When I’m not experiencing a flare, I still have Crohn’s, but it’s mostly dormant. On a “normal” day, though, my stomach is still over-active. I still have to spend a lot of time in the bathroom in the morning particularly, and I still find myself likely to make bathroom stops while running. (High impact activities = stomach jostling = bathroom immediately, please.) I generally feel well, but my normal isn’t quite normal. I’m not generally in pain or discomfort, but I do spend more time in the bathroom than most people.

But when I’m flaring, that all goes right down the toilet. (Confession: I actually hate poop and bathroom jokes. I find that a lot of Crohn’s kids love them and use them all the time, and I generally loathe them. I’ve also never once used the poop emoji, because I hate that, too.)

A flare, for me, comes out of nowhere. Let’s take this most recent flare, for example.

I was marathon training, working, and going through life just fine. My training was going great, and I was feeling strong and happy.

At my happy place with my happy people.

At my happy place with my happy people.

Then, Brian, Ellie, and I went up to New Hampshire to stay with my family for a few days. I was supposed to do a track workout, and I couldn’t even make it to the track. Thank goodness I was in New Hampshire where there are plenty of wooded areas, because I had to use them multiple times. I knew immediately that a flare was pending. My parents and Brian were all, “Maybe it’s just something you ate,” but I knew.

By the next day, it was clear: I was in the bathroom constantly, I was too uncomfortable to run, and what was happening in the bathroom made things very evident. When I’m flaring, I’m not just going #2 a lot — when I go to the bathroom, it’s mostly blood. So when I say I go to the bathroom dozens of times a day — and yes, that number is accurate — I’m mostly running to the bathroom to sit on the toilet and, well, bleed from a place no one wants to bleed from. It’s painful and, no surprise here, pretty gross.

The bathroom trips are also incredibly urgent. It’s not like, “I’ll go for a run and there’s a bathroom a few miles down the road, so if I need one, I’ll use that one when I get there.” Instead, my stomach goes from OK to “I need a bathroom right this second,” with zero warning. That’s why, when I’m at J.Crew trying to shop like a normal human, I can’t just stroll down the mall to eventually work my way to the back of Bloomingdale’s to use the Ladies’ Lounge there. I need a bathroom now, or I will have a very unfortunate accident. It’s embarrassing and mortifying having to beg someone to let you use their bathroom.

Outlet shopping is great because there are usually lots of bathrooms along the way!

Outlet shopping is great because there are usually lots of bathrooms along the way!

Which brings me to my next point, which is that Crohn’s is, for the most part, an invisible illness. In one sense, that’s nice! On days I want to power through a flare in an attempt to feel normal, no one looks at me like I’m the sick kid!

But it can also provide a large burden. When we were waiting to go through customs at the airport on the way back from Paris, we were probably 80th in a line that was moving so. slowly. I’d scoped the bathroom situation, so I knew there were restrooms kind of close, and that I could probably make it to one if I needed. But I was so tense and uncomfortable the whole time we were waiting. To my left, there were two people in wheelchairs, who went straight to the front of the line.

And I was so jealous of those two people.

An f-ed up way to feel, I know. But I looked at them and I longed for my disease to be visible. I wanted to have a cast on my leg, I wanted to have crutches, or I wanted to have any kind of physical setback so people wouldn’t question me when I had to cut the line, whether at customs or in the very long bathroom lines at the Louvre. It’s one thing to run to the front of the line and say, “I’m nine months pregnant — see? — do you mind if I scoot in front of you?” But most people haven’t heard of Crohn’s disease, so the few times I’ve actually really needed to cut a line, I’ve had to explain my disease and why it’s an emergency, and beg them to take pity on me. (Like that time in J.Crew when I was reduced to actual tears in the middle of the store, begging to be let into the employee restroom.)

I’m of course in no way saying that people with visible physical disabilities have it “easier” or that they’re always treated as they should be. I’ve ridden public transportation enough in NYC to know that no one has it easy in this world! But sometimes I wish I had a sign or something that said, “I’m sick, even though I don’t look it. Please be nice.”

Looking normal, feeling awful.

Looking normal, feeling awful.

As for how Crohn’s actually physically feels…

The way I always describe the feelings of a flare are to imagine a hand mixer — like the KitchenAid or Cuisinart kind you register for when you’re getting married and plan to bake cookies or mashed potatoes in the future — and imagine it being on a low speed…inside your stomach, at all times.

That’s how I generally feel during a flare. I’m not always in pain. But I am almost always uncomfortable, as if there’s a constant churning or unsettling going on in my abdomen.

Then, that churning will, without warning, of course, go from first speed to top speed. When that happens, I have to make a high-speed run for the bathroom. Once I’m in the bathroom, I generally get a bit of relief, at least for a little while. Some of the pressure goes away, at least until the next time the hand mixer really wants to mix things quick.

During a flare, there’s also more than just the stomach stuff. That’s what hits me the hardest and affects my lifestyle the most, but there are also fevers, night sweats, joint pain, hair loss (coming in hot with this flare — it’s falling out by the handful every time I shower), anemia, exhaustion, and a host of emotional factors, too.

The unpredictability and uncertainty surrounding this disease are the most draining factors for me. Yes, the physical stuff completely sucks. But the emotional toll it takes is massive. Crohn’s disease can be incredibly isolating and lonely, so if you know someone who has it, just try to be extra nice and maybe a little sensitive. Sometimes we feel totally fine, and other times we collapse into a puddle of hysterical tears. Sometimes we can sit on the couch with you and chat for hours, feeling totally fine — probably because we’re in the comfort of our homes and can chill out knowing the bathroom is just around the kitchen — and other times we go weeks without sleeping because we’re running back and forth to the toilet all night.

Turns out I don't have many pictures of myself being sick and crying, so here's another happy picture.

Turns out I don’t have many pictures of myself being sick and crying, so here’s another happy picture.

I hope this explanation — personal as it may be — is a little helpful. Crohn’s disease affects people so differently. There’s no, “This is a stress fracture, so rest for eight weeks and you’ll be good to go.” It’s a little less definitive, a lot less certain, and, in many cases, pretty uncontrollable.

So that’s what Crohn’s disease feels like for me. A hand mixer in my belly and a dark cloud over my head.

ANY QUESTIONS? 

Posted in Crohn's disease and tagged -

23 Responses to "What Crohn's Disease Feels Like"

It has to be tough to have a disease where no one can tell from the outside- I have a couple friends that struggle with mental illness issues and it’s the same- people don’t feel bad for you or cut you any slack unless they can see a disability. As always I love your transparency and I’m wishing you lots of healthy and healing vibes <3

I used to work retail and we were told that we weren’t allowed to let the public use our restroom in the back. We always made exceptions for little kids, but never for adults. If I ever work retail again, I will let anyone that asks use it because you just never know.

As a fellow Crohn’s kid, I also hate the bathroom jokes. Not a coping mechanism for me. Makes me even more self-conscious and anxious.

The Crohn’s/Colitis Foundation (I think?) used to have a little card you could carry with you staring that you have an diagnosed illness that may require the urgent use of a bathroom. I’ve never used it but it might be helpful to have in case you run into a J Crew situation again somewhere. It came about because of a girl in an Old Navy store who had Crohn’s. Now of course, Old Navy has public bathrooms which is helpful for all of us!!

I don’t have a hand mixer churning, I have a spoon scraping out my insides. And therapy has helped me A LOT with the black cloud. It’s still there but much smaller than it used to be.

The uncertainty about Crohn’s is truly the most difficult thing about it. Every pain, every ache – you analyze it – is this a flare? Does this mean more surgery? Do I need to adjust the meds?

Hang in there – I know it’s tough! Sending you positive thoughts and good energy! ❤️

YES, I have the CCFA card in my wallet actually! It says “I HAVE TO GO” in huge letters. Haha. So I have it, but it’s still awkward to have to flash a card in someone’s face and wait for them to read it and the whole conversation that follows. So YES, you’re right, that’s a resource (and one that I have but admittedly don’t use), thanks to Ally’s Law! (Which, of course, no one has ever heard of, haha.)

Having UC, I can relate to many of your thoughts and feelings. I am so sorry you are going through yet another awful flare. My thoughts are totally with you! My first boss out of college didn’t believe I had UC because “you don’t look sick”. She would give me grief for being late to work (because I couldn’t make it to the bus without going back home to use the restroom) or taking days off (hospital visits). I wanted to tell her to come look at the toilet after I was in there. Once I was in an Urban Outfitters here in Boston and I knew I couldn’t make it across the street to the public restroom, so I asked to use their bathroom. I didn’t want to flash my “I HAVE TO GO” card, so I quickly explained my disease. The employee waited outside the bathroom door for me…was he expecting me to steal TP or something? I hate having the sweats when experiencing a flareup and the constant nervousness about where the bathroom is. Just like you are aware of the bathrooms on your runs in NYC, I know where the bathrooms are along the Charles…even ran into the MIT chapel once. Just wish there were more woodsy areas…

FIngers crossed your Crohn’s will leave your body soon.

Thank you for your openness. I didn’t know much about Crohn’s disease until I started reading your blog. I have a friend with similar symptoms and I’ve often wondered if this is what she has. I hope your current flare up is a short one.

Thanks for the honest, heart-wrenching post, Ali. I can’t even imagine the stress and agony you go through. I did have a question — when you were a child and diagnosed, were your teachers in school accommodating to your needs to use the bathroom as necessary? I imagine as a child it is even more mortifying to have to urgently rush out of the classroom.

Also, not related to Chrone’s, but you DID mention Lululemon, and I have never shopped there but always want to. Want to do a quick list of their Biggest Hits, especially if they’re on the “We Made Too Much” list?

Hope you were able to enjoy Paris a bit despite the pain.

You’ve always been so brave and vulnerable to share, and this post especially shows so much courage. You continue to be an inspiration!

This makes me so sad – I’m sending a virtual hug your way. I think it is obnoxious that you have to put up with so much bullshit (not letting you use the restroom) when you are clearly in distress. I don’t have Crohn’s, but I have something similar called Interstitial Cystitis. It is like Crohn’s of the bladder. I totally can relate to everything you are going through. I am currently flaring and I am feeling down in the dumps. When I am flaring, I pee 70+ times a day. I get up all night because my bladder can’t hold even the smallest quantity of urine. I am in constant pain and I need to be near a bathroom at all times. The best way to describe my pain is that it feels like I drank a gallon of water while having a UTI and I am being forced to hold it in. I also can’t run because I am so uncomfortable due to my bladder being jostled around. Again, it’s like running with a full bladder – so freaking uncomfortable. I am feeling really sad and depressed 🙁 I hope that you start feeling better soon. You are such a wonderful person and talented runner and I really want to see you crush NYCM. Lots of love to you <3

Thank you for sharing your experience, Ali. I really hope that you start feeling better soon.

As a Crohns sufferer, I definitely relate to occasionally wishing it was more visible. There is nothing worse that having co-workers compliment you on how “amazing” you look when you lose ten pounds in a week because of a flare.

Thanks so much for sharing your experiences. It is truly inspiring to see you push on as a runner, even though it isn’t easy.

My husband has a muscular condition that isn’t particularly visible. Some days, he needs a wheelchair, some days he doesn’t. On those days, he often gets nasty looks when he parks in the handicap space.

I so admire your tenacity, and honesty, in the face of extreme adversity. I’m sorry you have to suffer. Sending you good juju.

Do you have an IBD emergency bathroom card? Check out the c&c foundation website. You can order one at no cost and they ship all over the world. It can help to show your card when travelling or in public restrooms.

Yes. Just yes to everything. I get it.

Do you take anything for your pain?

Also, for me it’s more like grinding boulders. But I can totally still get the mixer analogy. Are you ever amazed by all the different ways your stomach can hurt?!

In London, the underground (metro system) offers buttons that say “baby on board” and “please offer me a seat” for people to wear who may not have visible pregnancies, disabilities, or illnesses. They seem to work really well and be a subtle and socially acceptable way to get a seat on a crowded train when you really need one. Maybe other places will offer them in the future, I think it’s a great idea.

Thanks for your personal experiences spelled out here for the public. It is helpful to teach others. My younger sister has lived with severe Crohn’s for40 years…numerous surgeries..then the ileostomy that made life better..but of course not a cure as the inflammation may return to the small bowel. I applaud you for educating the public..first teach, then work to get support for more research…Let’s cure Crohn’s..and other auto immune diseases..!!!

Ali, thanks for sharing. I’ve mentioned on twitter that I also struggle with Crohns and very similar whereby it is caused by stress rather than diet (actually if someone tells me what to eat again I might just flip out). It’s hard to explain the mental stress that stomach issues cause, constantly worried what might happen. As you said people with visable disabilities often get sympathy that we do not, and I totally relate.

I don’t want to compare my recent hip surgery to this, but I will say people were VERY nice to me when I was walking around with crutches – I got tables at restaurants, seats on the subway, people let me go in front of them in line for the bathroom. I did get some side eyes as people tried to figure out what was wrong, but overall, so nice. Now that I walk around without crutches, I’m just slow and no one knows anything ever happened – just look like a young healthy person! It’s definitely interesting how a visible disability/issue differs from one you can’t outwardly see.

I can’t imagine having Crohn’s and how it takes over your life. I had food poisoning earlier this year – for one day – and it was miserable. (Another terrible comparison.) Not knowing when it would end or what it would take to get to the end would be so, so hard. Hugs to you.

Oh, honey. I’m so sorry you’re going through this. I had no idea that Crohn’s came with butt bleeding, and I’m even sorrier that I giggled when I typed that because I’m kind of a terrible person. Mostly I’m thankful that you were brave enough to write this and put it all out there. The more people who know, the better, because then they can say “I have Crohn’s and this is an emergency” and go straight to the front of the line.

Thanks for sharing. So accurate.

I completely relate to everything you have said here! Crohn’s sufferer for 12 years now. I was lucky after the first couple years of trial and error I had my disease quite under control with the help of Remicade and then Humira. Then 2 1/2 years ago, while pregnant with my son I started flaring. That flare kept going for a good 2 years until I started Entyvio this past spring (and even now I’m still not at my ‘normal’). It’s so hard to deal with sometimes… My flares have always been from stress too and I was going through the most stress I’ve ever had so it was kinda inevitable! Steroids help but the side effects are almost as bad as the disease! It still makes me so sad that this disease basically robbed me of my son’s1st year. I am sending you positive thoughts and hoping that your flare packs its bags and leaves!! I am so in awe of you for even attempting a trip to Paris! Travelling with a flare is one of my biggest fears. I wish you could have had a pain (and blood 😞) free trip though!