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Running With Crohn's Disease
This week is a cutback week in marathon training. So my long run this week is “only” 13 miles.
I woke up early today, got dressed, and spent two whole hours going back and forth to the bathroom. Eventually, I felt like I was OK enough to get out for my run.
I made it .16 miles before I had to turn around and come home.
I’m frequently asked about running with Crohn’s disease — how to make it work, what to do, etc. And I’m certainly no expert (ugh, I wish I were, then I could cure myself!), but I’ve been doing this for a while, so I figured I’d shed some light on what I’ve learned as a runner with Crohn’s.
Imagine lining up at the start of a race. The gun goes off, but you have no idea how long the race is. It could be an 800-meter sprint, or an ultra-marathon. You don’t know, so you just start putting one foot in front of the other and you try to hang on, hoping for the best and trying to catch a glimpse of the finish line.
That’s how life generally feels for me when I’m experiencing a Crohn’s flare. There’s a lot of unpredictability and uncertainty. For me, the hardest part isn’t necessarily the physical pain or discomfort — it’s the unease that comes with having no idea what’s going to happen.
Right now, I’m in the bad-but-not-the-worst phase of a flare. I’ve had milder flares, and I’ve had far worse ones. I’m experiencing the stomach pain, the near constant need to be close to a bathroom, and a lot of blood every time I go to the bathroom (sorry — no graceful explanation for that one). I’m getting daily headaches that are debilitating and painful, and I have a bit of joint pain. I can deal with those things, especially since I’m not currently experiencing the fevers and night sweats that tend to accompany most of my flares.
My issue, though, is that I have no idea where I am in this race. I don’t know if I’m .16 miles into a 26.2-mile race, or if I’m approaching the final straightaway on the track to wrap up a 400-meter sprint. I don’t know if this flare is going to take me totally out of marathon training, or if I’m just going to miss some speedwork and a few runs here and there.
I lose more sleep and shed far more tears over the fact that I don’t know exactly how this flare will impact my life rather than crying over the actual pain. (And trust me, the pain sucks. I’m just used to dealing with it and it’s not shocking to me anymore, unfortunately.)
So if running while I’m flaring is so frustrating, why do I keep doing it?
I do it because I still can.
My sick girl runs aren’t quality runs if you’re going by the numbers. Yesterday I was able to get out for nine miles, which sounds great on paper (or Strava), but in reality, I ran nine miles and made as many bathroom stops. I was literally running from one bathroom to the next. But there were fleeting moments when I felt alive, when I didn’t feel sick, and when I wasn’t panicking about where I’d be able to stop next. And I live for those moments.
I keep running because, three years ago, I couldn’t run at all. I was so sick and so sidelined that I went days, sometimes weeks, without even leaving my apartment. I was deeply depressed, extremely ill, and couldn’t even think about the proverbial finish line, let alone picture one.
Each time I get sick, I keep running until I can’t. Hopefully this time around there won’t come a point that I can’t. But I never know. So I keep trying.
That tends to strike a nerve with some people. People love telling me to stop running. That running will make me sicker, will make me feel worse. I’ve talked with all the doctors I’ve ever had about this, and not one of them has told me that running is the reason I’m sick, or that running will make me sicker. We all agree that I have to be respectful of my body, and that some days that might mean not trying to run because my body doesn’t need the added stress and will better benefit from extra rest. But other days, the focus might be on my mind, and going for a run gives me the mental strength I need to keep going on the tough days.
I do, of course, come equipped with some tips. Here are a few things I’ve learned — and re-learned — about running with Crohn’s disease:
- Plan your route around available bathrooms. Know when the bathrooms open in the morning. Know if they’re usually stocked with toilet paper. Know if it’s a single stall where you might have to wait until the person in there is done, or if there are lots of stalls and it’s a generally quiet bathroom. Know which Starbucks locations have lock codes on the door (jerks), which Duane Reades have unlocked bathrooms, and which restaurants are open early for breakfast and will have available bathrooms.
- Always run with paper towels. Grab a few, fold them up, and stick them inside a Zip-loc bag. (Toilet paper is less durable, and if a drop of sweat touches the TP, it’ll be mostly useless. Paper towels are the way to go.) Just trust me on this one.
- Experiment with pre- and mid-run fueling until you find what works for you. I don’t care what everyone else is doing or even what people tell me to do. I know that I run best on an empty stomach, and that I race best without taking in very much water. Everyone tells me that’s wrong. Unless it’s hot, I don’t usually stop for water during half marathons or anything shorter. (I do fuel and drink for longer races, though.) Water sloshes around in my stomach and makes me need a bathroom immediately. Food does the same. Do what works for you and your fussy stomach.
- Figure out when to run. Timing is important. My stomach is at its worst in the mornings — so it’s no huge surprise that my run today didn’t happen. It tends to feel better as the day goes on, so evening runs work better for me when I’m flaring.
- Stick to trail running if you can. I’m far more comfortable running in the woods than I am on city streets. People in cities, particularly New York, can be real assholes about letting you use their bathrooms. But no tree or bush has ever told me to please move aside. Plus, I find trail running to generally be more relaxing anyway, and a calm mind often equals a calm belly.
- Don’t take no for an answer. Some states have passed Ally’s Law (the Restroom Access Act), which means that if you have a medical condition (Crohn’s, ulcerative colitis, pregnancy, etc.) that may make you need urgent access to a bathroom and a retail establishment doesn’t have a public restroom, the store has to let you use the employee restroom. Obviously not all employees know about this law (and not all states have passed it), but it’s good to know your rights! Yesterday, I bolted into a local gym and asked — in clear desperation — to use the bathroom. The guy at the front desk said, “It’s for members only.” And I said, “I wouldn’t be asking if it weren’t an emergency,” and just went.
- Understand that accidents may happen. This is probably the least talked about factor when it comes to having Crohn’s, and that’s because, well, it’s gross. But it’s also the unfortunate reality of having this disease. The cool thing about runners is that most runners get it. While plenty of my friends with Crohn’s or ulcerative colitis have had their share of on-the-go accidents, just as many of my perfectly healthy runner friends have had them mid-run, too. It’s life, man. We can take it really seriously, or we can roll with the less glamorous parts of it. I advocate for the latter.
- Run with people who get it. Runners tend to be pretty cool and understanding. If you’re looking for a group of like-minded people, check out Team Challenge. I ran my first half marathon with Team Challenge and was a mentor for a season, which was so rewarding. Team Challenge raises money for the Crohn’s & Colitis Foundation, and I loved that during our long runs, our coach always told us where the nearest bathrooms would be.
I’m going to try to do my long run tonight. I may have to stop after .16 miles again — but I may also get through all 13. The only way to find out is to try.
ANY OTHER RUNNING-WITH-IBD TIPS TO SHARE WITH THE CROHN’S KIDS OF THE WORLD? Have at ’em.