Running With Crohn's Disease

Date: September 9, 2016 at 10:04 am- by Ali- Comment(s): 23

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.

I had to make three bathroom stops and was still mildly flaring the first time I ran the New York City Marathon. But I did it.

I had to make three bathroom stops and was still mildly flaring the first time I ran the New York City Marathon. But I did it.

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.

My best little caretaker.

My best little caretaker.

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.

Missing this in a major way...

Missing this in a major way…

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.

#seenonmyrun in Burlington last week. Good for the soul.

#seenonmyrun in Burlington last week. Good for the soul.

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.

Healthier times at the track!

Healthier times at the track!

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.

23 Responses to "Running With Crohn's Disease"

As a fellow runner with Crohn’s, your tips are spot on! I’m a back of the pack runner and you inspire me. Thank you!

I don’t have any tips but just wanted to say hi and let you know that I didn’t want to run last night because I’m lazy, but then I saw your Instagram post (“Imagine lining up…”), got my butt off the couch, and stayed on track with my half marathon training. Thank you for the kick in the butt I needed. I hope this flare disappears ASAP. Good luck with your run tonight.

You are such an inspiration Ali. I love reading your blog and your dog is the cutest! Just to let you know that I don’t have Crohn’s, but I do have a very fussy tummy and have had several accidents mid run. It just happens and it’s normal and as you say, we just deal with it. I can’t imagine how hard it must be to get out there and run when you must feel like shite, but you do it and for that, you are amazing. Keep at it and keep that blog going!

I usually tried to stick close to my house when I was flaring. I could plot out a 1 to 2 mile loop that would have me passing by my house for emergency stops, and that worked well. I also run best on an empty stomach. Ironically enough, there was a period of time when I wondered if my UC would keep me from running at all, but then it turned out that what is keeping me from running these days is my lame hips. Go figure.

I’m sorry you’re dealing with another flare. Here’s hoping it’s a short one and not marathon length!

Love knowing about Ally’s Law–I am 23 weeks pregnant and can’t seem to make it through a run without a bathroom stop or nearly peeing myself. I live in a city which makes the “sneak into the woods” thing not really an option. I have mapped out my routes based on business I know let me use their facilities but frankly, I am getting tried of those loops. Now I will feel more comfortable waltzing into a business asking to use their facilities!

No Crohn’s, but totally remember how marathon training did weird stuff to my gut, and taking breaks on the side of trails. I always ran with my dog, and every time I stopped he would get so confused, and just run over and stare at me while I was going. Hope Ellie can be your trail poo buddy soon once (and if) she starts running more!

Love this post, you inspired me four years ago to look into Team Challenge and it dramatically altered my life. Here’s hoping you get through all 13 tonight and you feel much better soon. Thinking of you, xo.

I adore you! I, too, run even when I feel over crohnsy because I CAN. I am a huge advocate of trail running and rarely run anywhere but the woods or my little neighborhood where I am super close to home. Even though it sometimes mean interminable boring loops. 🙁 Here’s hoping you’re almost at the end of this particular crap fest and feeling fit quick!

I don’t personally have Crohn’s but I grew up with a father with it and I think your analogy of not knowing where in the race you are is perfect. His flare-ups seemingly came out of nowhere and we never knew how long it would last or the destruction it would leave behind. He’s still battling today at 75 years-old after 53 years with the disease! Keep running Ali and my prayers are with you that this one is short!!

So sorry that you’re back in this place, thinking of you!
True story when I first went to a doc thinking something was truly wrong (blood is not normal) I was told I “ran too much” and took almost 3 years to gather the courage to seek diagnosis when I then got to flare for a year. yay!
But all advice you shared is so spot on. I never stopped running for the same reason but took months to get the courage to head back outside after a few back to back unpleasant instances. Treadmill next to the bathroom = success.

People that do not have medical issues usually don’t get it. I have kidney disease along with several less serious but still not curable issues, people think that anything is too much (they mean well but it is really annoying how everyone becomes a doctor). I run, I no longer have marathon hopes, or half hopes for that matter. I am currently training for a 10k that I signed up for before my doctor told me to exercise less strenuously, (I was running, doing P90X, and various classes with few rest days, so yoga two days a week, running four days a week, and at least one rest day a week is a lot less than I was doing).

its hard, with any chronic disease you have to listen to your body. If I can’t do something one day I can always try again the next. When the next day it does not happen it gets hard, but that is the life we lead.

Thank you for sharing your story with us.

As a fellow crohnie, all of your tips are spot on. I plan my routes always based on bathroom stops and don’t do many neighborhood runs unless I’m feeling next to perfect. I never eat or drink anything before shorter runs and do not fuel or water stops for half marathons. I did find fuel that worked when I ran my full in January. I also found that my best pre-race/long training run meal is grilled chicken and white rice. Ate it all thru marathon training and the night before the race…I pretty much hate it now, but will eat it again for the next full! I also agree with you…why do I still run? Because I can!! It may be tough and I may have to stop, but I can still do it and I will as long as I can. Praying for you to feel better quickly!!

Oh man good for you for pushing through!!! You are amazing! I totally understand the multiple stops mid run because your colon won’t let you wait just one more mile! My hats off to you!

Ali, I am not a runner, and will probably never be, but I had to comment (my first – I can’t remember how long I’ve been reading and lurking). You are a true inspiration – not just to the runners – to the others of us that are just trying to “do life”. Your heart and determination and personality just exude the good things in life. I know it’s not all sunshine and roses, but please know you are making a difference. Thank you.

I think you are a true rock-star filled with inspiration to keep going. You fight a good fight Ali and I hope you feel better soon and can continue to run.

This is such an inspiring post and a great reminder as to why I and so many others I know run – the mental strength and toughness. Your desire to keep on running is very admirable and I can see why you keep doing it despite being sick. I really hope this flare settles down for you soon!

I totally feel for you and totally get it.
It’s my reality too.
It just makes me enjoy the good runs even more.

You are such an inspiration. Thank you for your honesty! My husband used to run a lot in high school and college. He has Crohn’s and tried to start running after several years off, but had to stop due to severely swollen ankles and having to go on prednisone for a month. Now he’s afraid of that happening again. He also says the uncertainty is the worst part for him. I plan to run for Team Challenge for my next race and will share this post to encourage others to do so as well. Love you, Ali! Hope you feel better soon!

I hope he is able to get back to it – it’s such great stress relief. I just got off four months of prednisone and I ran the whole time. Harder than usual actually since I had to “get the crazy” out! Best wishes 🙂

I’ve been reading your blog for so many years (without commenting) and just have to say you are such an inspiration! I hope the flare ends soon so you can get back to the track xx

Another Chronie runner! Also in the middle of a small flare:( All i do is think will the flare last days, weeks, months. The worry of it becoming crippling is worse than anything! It stinks and im not doing my 10k tomorrow. But im watching your pattern for how to keep moving with the flare. Love your tips – spot on! Thanks for keeping us all positive and keeping on … feel better

I don’t have Crohn’s and honestly only know what you’ve written, but this is one of the most inspiring blog posts I’ve ever read… for me… without Crohn’s. Thanks for sharing and always being so positive.

What a timely post! I’m having a mini flare and praying it doesn’t get worse. I’m glad I’m not alone in this world who loves to run long distances and has to deal with this disease. I’m training for Chicago (Oct 9) this year and I was looking online wondering if I should defer to next year. Then I spoke to my coach and several running buddies and I realized how far I’ve gone this year (I was in hospital in May but recovered quickly). My training has been consistent, only missing a couple of short runs, modifying ones when necessary, and running a bit slower than my regular paces (which is okay). I’m also feeling better this week, even after running a total of 48km this weekend. I’m not looking for a PB this year. I’m just looking to finish. Because I can. Thanks for this post. It made me cry (which is okay too) and I’m sending you a big virtual hug Ali. I hope you’ll feel better soon. xoxo