Crohn's disease

What It's Actually Like Living With Crohn's Disease

Date: September 25, 2018 at 7:02 pm- by Ali- Comment(s): 45

I wrote this last night when I was feeling, let’s say, a bit overwhelmed. I’d had a particularly exhausting day, and maybe it was the Crohn’s disease or the fact that I’m now nine months pregnant and am very aware that life is about to change — I don’t know. But I did some writing. The kind of writing I didn’t really intend to share, but then thought, that’s the kind of writing that tends to matter and should, perhaps, be shared. So here you go. It’s wordy! Late-night writing at its most vulnerable! 

I woke up officially around 5 AM today. But really that’s just when I decided it was an acceptable time to get myself out of bed. In reality, I had been up all night — tossing, turning, and running for the bathroom.

I probably ate too much for dinner last night. I should’ve eaten earlier, and less, but that doesn’t always happen. So I went to bed with a full, uncomfortable belly. I knew it probably wasn’t going to be a restful night for me. But I curled up with my pup, arranged my pillows just right, and eventually dozed off. I have no problem falling asleep most nights. It’s staying asleep that’s the problem.

And I didn’t stay asleep last night. I had terrible gas pains, and the thing about gas when you have Crohn’s disease is you just can’t trust it. So any time I feel like I need to release some gas, I have to run to the bathroom and do so in there, on the comfort of the toilet seat. If I don’t, I risk having an accident, and I’d rather not literally shit the bed.

So I spent hours repeating that routine: toss, turn, bathroom, gas, return to bed, can’t get comfortable, back to bathroom. Add a nine-months-pregnant belly (and bladder) to the mix, and we’re not exactly talking “sweet dreams” over here.

Which is why, at 5 AM, I decided to call it. I was up. I played on my phone, I read some emails, I stood in the living room looking at the skyline. But mostly, I hung out in the bathroom, with my feet firmly placed on my beloved Squatty Potty. I sat there as I played level after level of Two Dots. I’m on something like level 1700 at this point. And considering I pretty much only play this game when I’m in the bathroom, that tells you just how much time I’m spending in there. (I’m not that good at Two Dots.) At one point, I was in the bathroom for so long that when I went to stand up, I nearly toppled over. My legs and feet had fallen asleep.

A day in the life with Crohn's disease

Trying to appreciate the beauty instead of wishing I were out running underneath that beautiful sky.

Mornings with Crohn’s disease, for me, are a nonstop, incredibly urgent parade to and from the bathroom. My stomach is at its most active right away, so morning runs and sunrise walks are a thing of the past. That sucks because those are my favorite things. I don’t remember the last time I was out on a run at sunrise. Or out on a run outside, period. Instead, I sit on the toilet until I think I’m done, and then I get up and attempt to have breakfast or get some work done, but I’m often running right back to the bathroom. And it’s urgent. It’s always urgent. Sometimes I get steps from the toilet but I’m not close enough, and I don’t make it.

Few things in life are more discouraging, disheartening, and embarrassing than having a toddler-style accident in my own apartment, steps from my own toilet. It feels pathetic. I am 33 years old and sometimes I poop my pants. It is my least favorite thing about myself. That, and that I’m really, really, exceptionally prone to bug bites.

Eventually, my stomach felt somewhat calm and I was exhausted, so I crawled back in bed with Ellie who, at 6 AM, was obviously still sleeping. I fell into a deep sleep pretty immediately, only to be awoken minutes later by Brian leaving for work — and then a few minutes after that by my alarm. So my attempt to catch up on at least a tiny bit of sleep was thwarted.

I worked in my office for a bit until Ellie woke up, and then it was up to me to take her for her morning potty walk. When Brian is around, he does this, which is a HUGE help, since my stomach is so unstable and unpredictable in the mornings. (Actually, it’s completely predictable: I predict that it will erupt, and it always does. I just can’t control it.)

And here’s what happens every single time I take Ellie out mid-flare: First, I go to the bathroom to try and make sure my stomach is totally empty (which it never seems to be). Then I go “just one more time.” Then I put on Ellie’s suit (her harness) and leash her up and she stands there, excited to be going outside, and then, just as I’m about to open the door, I need to go again. And so the poor pup stands there, with her outfit on, wanting to go out, staring at me while I do what she wants to do. And I sit on the toilet, apologizing to her profusely while, sometimes, crying because I feel so guilty. She wants to do something so simple — go outside and get fresh air and smell stuff and go potty — and I can’t even do that for her. And it’s only 7 AM.

A day in the life with Crohn's disease


When we finally made it out this morning, all I could think about was my stomach. I couldn’t appreciate the amazing, fresh, crisp fall air, or the cool breeze, or the fact that I was wearing a big sweatshirt and was so cozy. Instead, I was constantly darting my eyes around to see where there were people and where no one was standing, in case I needed to run into the very few bushes surrounding our building. I looked up at the three buildings Ellie and I stood between, wondering if anyone was out on their balcony with their morning coffee, people watching — anyone who would witness if I had a very public accident.

That’s something I worry about a lot. We live in an age where people just adore taking photos and videos of total strangers and posting them online. Public shaming, yay! I am terrified I’m going to have a Crohn’s-related accident in public, and that some asshole is going to think it’s funny or gross or otherwise worthy of sharing, and I’ll become a viral sensation for shitting myself, or pooping behind a bush somewhere. It’s a paralyzing fear for me.

I managed to walk Ellie for a minute, all the while consumed by thoughts of, “Is my stomach OK now? What about now? Still OK? Deep breaths, Feller. You got this.” I’m constantly giving myself pep talks when I’m not immediately near a bathroom. This morning, it failed me.

If I were to walk into our apartment building through the lobby and to take the elevator up to our floor, I’d be in our apartment in about four seconds. It’s very convenient.

But building management recently decided the lobby is NOT, in fact, dog-friendly (rude!), and that people with dogs must use the service entrance on the side of the building, and then take the service elevator upstairs. (There is only one service elevator, as opposed to several regular lobby elevators.) This is as far as possible from the lobby, and as far as possible from our apartment. Normally that wouldn’t be a big deal. But for me, with this urgency-related disease, it means tragedy is more likely to strike. And today it did. We were waiting for the service elevator, and as I waited for it to come down from the 7th floor way too slowly, I knew I couldn’t wait. I ran back outside with Ellie (not sure what that was going to accomplish), and we just barely made it outside when it happened. I’ll spare details. It wasn’t that bad, but it wasn’t good.

This brings us to 7:20 AM. An hour when many people are still asleep — or some are just finishing up their beautiful, Instagrammy morning runs — and I’ve already spent nearly 2.5 hours focused solely on my bowels and my growing collection of dirty laundry.

A day in the life with Crohn's disease

This view always makes me feel a little better.

Being inside the apartment, at least I’m calm. My stomach may be crazy, but I’m home. I have bathrooms, I have privacy, I can relax.

Every time I go outside is the same, though. If I go to an Orangetheory class, I often have to use the bathroom in my building lobby, because I can’t always make it from my apartment to my car panic-free. The drive to OTF is fine — when I’m in my car, alone, I’m relaxed. I keep a towel on the front seat of the car “just in case,” and that comforts me. It’s like a security blanket, and it works and helps.

I’ll sometimes go to the bathroom once I get to Orangetheory, but I’m relaxed there, too. There are three bathrooms, and it’s extremely rare that all three are occupied at once. And if something bad happens, I can just leave. Not ideal, but I always have an exit strategy and a bathroom plan.

Then, throughout the rest of the day, it’s a lot of sitting at my desk, going to the bathroom occasionally, and repeating the same routine of taking Ellie out, panicking, and sometimes having an accident. Today, I had more than one, all within a 10-foot radius of my own front door. I’m not proud of that. I hate that.

It happens when I’m about to record a podcast, too. It’s silly, since I’m at home and the conversations are over Skype and they aren’t even video calls. But in the moments right before we record, I’m often running to the bathroom constantly. I know it’s partly mental. I’ve tried finding ways to keep my brain at bay, but I’m not always successful.

Then, on this particular day, I was feeling sad, exhausted, and defeated, and was really hoping Brian would be home to take Ellie for her nighttime potty walk. She admittedly got next to zero exercise all day, which I hate. She’s a high-energy dog. She loves to be outside and play, and I love nothing more than to do those things with her when I can. It’s one of the many reasons I love being freelance and working from home. But right now, I just can’t. I can’t even take her out to pee without having an emergency of my own. I definitely can’t get her the exercise she needs, and I don’t want to send her to daycare every single day. So I do my best. And today, my best really sucked.

A day in the life with Crohn's disease


I felt so guilty by nighttime. She was restless, and as 10 PM neared and Brian wouldn’t be home for a while, I knew it was on me.

Ellie’s nighttime walk was fine. Short, but fine. When it’s dark out, I’m more relaxed, and being relaxed helps. There are more dark corners I can duck into if needed, and there are fewer people outside with smartphones ready to take a photo they think is hilarious and innocent but that could ruin someone’s (my) life. (Dramatic? I don’t really think so. It’s a legitimate concern here in 2018, sadly.)

Ellie and I made it back in, accident-free. I even survived waiting for the freight elevator to come down from the 10th floor. Now, we’re in bed, and I’m sitting here feeling guilty that I was a bad dog mom today, and stressing over how in the world I am going to take care of an infant and a dog and myself. I clearly can’t even take care of myself right now. These thoughts consume me.

I want to be crushing my career right now. I don’t want to be spending so much mental energy thinking about poop. And I want to be doing what everyone keeps telling me to do, which is de-stressing and relaxing and treating myself in these final weeks before the baby arrives. But I can’t relax. If I’m out and about, I’m stressed and anxious. I can’t even go to Target without having a near panic attack, because the restroom is all the way in the back corner of the giant store, and that walk feels like a marathon when I need it.

All the little things most of us take for granted every day — waking up and doing whatever we want, going for a run, going for a walk, walking our dogs, commuting to work, sitting in a meeting — those are things I cannot do when I’m flaring. My bowel movements consume my thoughts and take over my actions. They dictate what I do and, sadly, what I can’t do.

A day in the life with Crohn's disease


I hate having limits. I want to do whatever I want, whenever I want. I want to spend all day every day outside with my dog. I want to go out to lunch with people I think are cool and I want to talk about their careers and learn about their lives. I want to go out with my friends. I want to be engaged in conversations instead of constantly staring at the closest bathroom and counting down the seconds until the person who just went in there leaves. I won’t even go to places that only have one bathroom (which eliminates most NYC establishments).

This disease is exhausting. Physically, it’s draining. Emotionally, it’s…whatever word means more than draining or exhausting. Factor in being 36 weeks pregnant and it’s tough, man.

If you know someone with Crohn’s disease, whether it’s a colleague, a loved one, or a semi-stranger, I urge you to be compassionate. I’m so open about this disease, but there’s still so much people don’t see and that I don’t share. I’ve lost friendships over this disease. I’ve missed so many things I’ve wanted to be at, and I know that many people in my life think I’m a total flake for it. I say I’m going to be at things, and then I bail in the final moments, not because I don’t want to be there, but because I’m either too sick or too anxious about maybe getting sick while I’m out (translation: pooping my pants in a crowded bar because there’s only one stall and there are a bunch of drunk girls in there taking their time).

I do my best to stay positive with this disease. I remind myself that each flare is temporary. But over the past few years, the flares have lasted longer than the remissions. I try not to compare the two timelines, but it’s hard to remember the last time I was healthy for, say, a full training cycle. I was hoping to get through this pregnancy flare-free, and after a solid first trimester, things were looking good. But here we are. Flaring for the second and third. Flaring with a baby just a few weeks away.

I live with constant guilt. For as much as this disease affects my life, I’m tirelessly thinking about how it affects everyone around me. How, for Ellie, it means I can’t take her out to play, even when she gives me her saddest eyes. How, for Brian, it means I’m not a very good wife. Even when, mentally I feel OK, which I have this time around, I’m certainly not a sexy wife, and I rarely want to go out to dinner or away for the weekend because I’m uncomfortable being anywhere but home. How, for my friends, I’m never around. Yeah, I’m OK at texting, but I truthfully never make an effort to see them because I hate going out in public or leaving the comfort of my apartment. I isolate myself so I can be comfortable, and in turn, my relationships suffer and so does my mental health. But I haven’t found a solution for that.

I have no idea what my life will look like when this baby gets here. I’m hoping that the baby will come out, the placenta will come out, and whatever is causing this flare will come out, too. I want to enjoy life with a newborn and all the changes that come with it. I don’t want to force my hungry baby to wait to eat because mom couldn’t get herself off the toilet. (I know there are solutions to all these things. I know I can pump, have bottles ready, etc. I know. I know.)

A day in the life with Crohn's disease

Love this. Even on my toughest days.

Now, it’s 11 PM and I just want a good night’s sleep. In reality, there will probably be some tossing and turning. I’ll wake up when Brian gets home, and I’ll need to use the bathroom a few times. I never just go once. Every time I switch positions in bed, my stomach jostles and I need to go “just one more time.”

Ellie is asleep at the foot of the bed, and I can hear her stomach rumbling, and that terrifies me. I’m afraid she’s going to wake up and run for the door, needing to go out urgently. And I can’t blame her — that’s my entire life, after all. But for me, it’ll mean getting dressed and getting out the door equally urgently. It’ll mean making it down several flights of stairs accident-free, walking her accident-free, and then waiting for that damn freight elevator, accident-free.

And then in the morning — whatever time that is — I’ll make sure the toilet paper is fully stocked for another day with Crohn’s disease.

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