IBD Is a Marathon, Not a Sprint

“Who wants an Oreo?”

A man sits near me in the road, offering Oreo cookies to the bike riders pedaling past him up a massive hill. Another man walks over and asks, “Did you give out cookies last year, too?”

“Probably,” says the man in the road.

“Well, if it was you, it was a highlight for me, getting that cookie. I really appreciated it.”

I am on the sidelines of the IRONMAN Wisconsin race: a feat of endurance for athletes who will swim 2.4 miles (3.86 kms), bike 112 miles (180.25 kms), and run 26.22 miles (42.20 km) in one day. Many of the spectators are previous racers themselves: they sport hats, shirts, backpacks, and even tattoos with the IRONMAN logo.

IBD, Swimming & Me

My friend, Ryan Stevens, who is competing, is what brings me to Madison, Wisconsin to see an IRONMAN race for the first time. Ryan is a permanent ostomate who lives with Crohn’s disease. His true sport is swimming: he swam in college and his swim across Lake Eerie was the subject of a documentary, Making A Splash For Patient Advocacy

His Crohn’s diagnosis came in his 30s and put his life on hold for several years while his condition deteriorated and he cycled through treatments, losing weight and becoming, as he describes it, a “ghost” who couldn’t get off the couch. His disease became serious enough that surgery was finally necessary. He had a colectomy with a straight ileoanal pull-through. During this surgery, Ryan’s large intestine was removed and the end of his small intestine was connected to his anus with a titanium ring. It’s a type of procedure that’s not commonly done for Crohn’s disease. His quality of life returned for several years after having the pull-through and he returned to swimming, which included two Lake Eerie swims. It was during this time that I first met Ryan at Digestive Disease Week in Chicago.

A few years later, Ryan’s Crohn’s disease came back again with a vengeance and he needed several more surgeries, including permanent ostomy surgery. During this surgery, a small piece of his intestine was brought outside his abdomen. This is called a stoma. An appliance is worn over the stoma in order to collect waste. The appliance, commonly referred to as a bag, is emptied as needed throughout the day.

Walking towards Lake Monona in Madison, Wisconsin for the IRONMAN Triathlon, I get a notification on my phone that Ryan has entered the water. It’s 6:50 AM. I’ve downloaded an app which tracks the athletes during the race through a device they wear on one ankle. It’s not exactly real time; it works through estimates. The app calculates the athlete’s pace and then gives an estimated time when they’ll pass over the next tracking mat. The mats are placed throughout the race route and are designated on the map within the app. While it’s not a perfect system, it does work pretty well. 

The night before Ryan told me his strategy was to get in the water soon after the professional athletes and make the 2.4 mile swim in under an hour. The first part of the plan was clearly underway, and I was already a few minutes behind on my race-watching.

I find a spot high above the lake on the top of Monona Terrace, the lakeside convention center designed by architect Frank Lloyd Wright. I see the swimmers in the water but of course, can not make out which is Ryan, even with binoculars. This time, I trust the tracker and when he starts the final loop of the swim, I head towards the finish line. 

I make my way as close to the finish as I can; it’s crowded and I’m shorter than the average adult human so I work my way in as best I can. The professionals are coming out of the water; stripping off their wetsuits as they run to the transition area where they’ll change and prepare for the bike race.

I finally ask the people in front of me if I can move forward for a few minutes. “My athlete is coming out of the water,” I tell them. One of the men near me is taking video on his phone of all the athletes. I then realize that some of the spectators are more aptly described as “fans.” I also know that Ryan’s time in the swim will be closer to the professional times and that a lot of the people in this huge crowd are going to be standing there for another hour (or more) before their athlete finishes the swim. (At the Starbucks, I proudly tell people his swim time and take glee in their amazed expressions.)

I recognize Ryan as he gets out of the water and am able to take a few seconds of video where his name is announced as he makes his way to the transition area. His time is a few minutes behind where he wanted to be and while he looks strong he also looks frustrated and I wonder if something went wrong.

I Like to Ride My Bike

I’m fortunate with this race being in Wisconsin: I have an ace in the hole in the form of Megan Starshack, co-founder of The Great Bowel Movement, who I also met for the first time at Digestive Disease Week years ago and whom I collaborate with frequently. She’s a local so not only does she know the area but she also knows races so she’s able to download me on several things. We meet up at the swim finish and she drives us to the bike race area: which, for the spectators, is a party.

Megan, a runner and cyclist, knows many of the people at the race area from a bike shop, Emerys Cycling. There’s hot dogs, hamburgers, pop, beer, chips, and cookies roadside under big yellow tents as we wait for the riders. Because Ryan was out of the water so quickly, we make our way to the big hill on the race route fairly early and are able to catch the first few professionals as they ride by. It’s quiet in the beginning and Megan and I take the opportunity to get some chalk and draw a message for Ryan in the road.

“Ryan’s favorite is Captain America, right?” Megan confirms with me. She begins to draw a giant version of Captain America’s shield. Below it I start lettering a quote from Avengers: Endgame, from a scene where Captain America agrees with Tony Stark about his own posterior: “That IS America’s ass.” I misremember the quote and write it incorrectly, but the sentiment is there. So is the word “ass.” 

“Hey lady, this is Wisconsin,” a man with a megaphone calls to me, “We don’t use that word. There’s children here!”

“I know what that word is. I hear it every day,” one of the children near us declares, before her mother shushes her.

Crisis averted.

I am mistaken in thinking we can’t go near the riders but I see several people run up the hill next to the cyclists, cheering them and providing support. I’ve heard a lot of discussion about touching and disqualifying based on different things that happened in previous races and, being a rule follower, I certainly don’t want to run afoul of anything.

“Can we do that?” I ask Megan. She confirms that we can.

“We’re doing that,” I tell her.

When the app tells us that Ryan is coming near our location, Megan stands closer to the bottom of the hill and I stay near the middle with my camera. We realize we don’t know what he is wearing so we are on high alert until we figure it out. We had time to go through a few of Ryan’s older race photos so we think we have an idea of what his bike and his helmet look like. I recognize Ryan, though, as he gets close to Megan so I begin taking photos. Megan runs along side of him and as they come close, I stop taking pictures and run on his other side. We are both shouting encouragement. I’m told that this is helpful but at a certain point I wonder if we are actually annoying, like loud little gnats. The hill is long and steep enough that we can keep pace with him until he reaches the top and picks up speed again.

Riders do the same route twice, so we have a second chance to see Ryan and run along side of him as he goes by again. We tell him he’s stronger than the hill (using a few words that hopefully the children present don’t actually hear every day).

“This is still better than surgery,” Ryan tells Megan and I before once again reaching the top of the hill and speeding away from us.

The Dark Side

The crowd on the bike route has already begun to thin out, and Megan and I make our way back to town to see the running portion of the race. The entire course winds through downtown, between restaurants and shopping, in the shadow of the Capital building. To me, the route is confusing, even using the map in the app, but we figure out where the runners will come out of the transition area and we stand at the bottom to wait for Ryan. Once again, we don’t know exactly what he’s wearing and this time, we almost miss him. I manage to get a few photos with my phone as he runs past us.

I know that this is the worst part for him: Ryan makes no secret of his dislike of running. And now he’s running a marathon. After swimming. And biking. I’m reminded of the period a few years ago when a series of infections sent him into surgery over and over again and finally to ileostomy surgery. Quite frankly, it was really scary, and I’m so happy to be on the sidelines of this race.

Intercepting the runners at different points along the route isn’t easy because it would require a lot of running ourselves. Megan and I are left to our own devices for a bit so we meet up with other friends and take in the energy of the race.

The night before Ryan mentioned a bakery called Insomnia Cookies, and that he’d seen some other athletes with cookies but we didn’t know where it was located. Megan and I manage to find Insomnia Cookies and pick up a few for him to have after the race. The man in the store is overwhelmed with orders; his boss didn’t know about the IRONMAN race and didn’t schedule appropriate help.

Despite our efforts, Ryan outpaces us a few times as we get held up with navigating foot traffic downtown and we miss him along the route. I manage to get more photos of his back as he runs away from us. I was told, by friends who completed other IRONMAN races that it’s important that the athletes see their friends along the route. I decide to pick one spot at the halfway point and stay there until I can catch him again as he comes by.

The app works to track the athletes through their pace. As I’m standing on the sidewalk I see Ryan’s little dot on the map move towards me and then past me. But I never saw him. I panic for a minute and think that once again I’ve gotten to a location too late but then I realize that this disconnect might be because his pace has slowed. Which it had; I see him turn the corner at the state Capital and come towards me, drinking some water. He sees me and waves. We walk together for a block before he picks up the pace and leaves me behind. It is at this point that I realize he’s going to be fine.

This Is The End

Having managed to be wrong about timing and pacing several times during the day, I make my way to the finish line long before Ryan is scheduled to cross it. There was no rain in the forecast; and of course it begins to rain. I was told that spectating an IRONMAN is a long day but I didn’t really believe it. It is at this point, standing under an awning because my rain gear is back at the hotel that I finally understand what this means.

Along the final stretch of the route, there are signs and barriers blocking the sidewalk and a huge crowd. When it starts to rain, nobody moves from their spot along the route. Over and over I hear the announcement as racers cross the finish line: “YOU…are an IRONMAN,” or “you ARE…an IRONMAN.” Spectators cheer each and every competitor as they run down the final stretch. Many of the runners raise up their arms or shout, whipping up the crowd.

It rains harder. The crowd stays.

I decide that when Ryan is approximately 10 minutes away from the projected finish I’ll move out from under my awning and find a spot along the route. It’s packed and I’m unsure of the best place to stand to get photos and video. I walk back and forth until I can find a place to squeeze in. People are excited and it’s hard to get good photos as the spectators next to me lean over the barriers to cheer. Their athletes are nowhere near; they are rooting on others for hours until their person reaches the finish. Racers come through every 10 or 20 seconds to loud cheering.

I get the notification that Ryan is coming around the corner and into the final stretch so I get ready to do the best I can in taking photos from my vantage point. I’m far enough away from the actual finish line that I don’t see him cross over it, but I hear his name announced. 

It is at this point that I realize we have made no plans to meet up after the finish. I walk behind the finish line and it’s controlled chaos. Runners are coming out of the gated-off finish area and taking photos and getting something to eat, spectators are shouting at their athletes, and volunteers are everywhere. I have no idea how to find anyone or if they’ve left the area so I take more photos of the giant screens and head back to the hotel. It feels anticlimactic but at this point it’s 10:00PM and I’m exhausted because I am not an athlete and it WAS a long day.

We meet up at the hotel later, where I show Ryan photos from the day, including the Captain America shield Megan drew in the road with chalk. It’s late and we don’t have much time to celebrate; life continues early the next day, whether we are ready for it  or not.

IBD is a Marathon, Not a Sprint

I often think of the inflammatory bowel diseases (IBD) as being like a pot of water simmering on the stove. At times, it’s easy to forget about it. You can walk away from it and it doesn’t do anything overt to remind you it’s there. It might take some time, depending on how much liquid is in the pot, to boil down to nothing and burn. It will happen eventually. The question is: do you manage to get there and turn down the burner before the smoke alarm goes off?

Crohn’s disease and ulcerative colitis are chronic and lifelong. Many people living with these conditions, like Ryan, go through periods of severe disease and work their way back to health slowly. The changes are incremental but the effort is extraordinary.  We live our lives with that burner constantly on, out of our control, and all we can do is keep adding water. Sometimes it’s a caregiver or a healthcare provider that adds water. Sometimes we do it ourselves. But someone always has to have their eye on that pot.

This is where I think the IBD community excels: we watch each other’s pots and we fill them with water before they burn down to nothing. I know there’s people outside the IBD community that wonder why someone who lives with IBD and an ostomy would want to compete in endurance sports. After all, there’s plenty of people who are healthy who don’t ever feel the need to run a mile, let alone a marathon. No one would place blame if we gave up, so why do people with IBD continue to push themselves?

In the end, I think Ryan put it best as he pedaled up one of the many hills on the course of the IRONMAN Wisconsin bike route: “It’s still better than surgery.”

2 thoughts on “IBD Is a Marathon, Not a Sprint

  1. Claudia

    Amazing story…lots of IM stories like this one keep inspiring us cause you guys overcome bigger obstacles than the race itself.
    Keep living at large!
    PD : I lived w a paraplegic that had an ostomy..cant imagine the nutrition/ hydration adjustments.

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