Utah coach Beth Launiere normally would just manage the pain.
But last month, after a long weekend of feeling like she was the host to most of the youth volleyball world, she couldn’t take it any more.
Launiere has Crohn’s disease, which, described by the Crohn’s and Colitis Foundation, “belongs to a group of conditions known as inflammatory bowel diseases (IBD). Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract.”
And it hurts. It hurts like hell. Eventually, Crohn’s patients end up having sections of their intestines removed because of scar tissue and blockage.
“I’ve never missed a match for this, no, but I’ve been sick a number of times during matches,” Launiere said from Salt Lake City. “There have been times I’ve been really sick and then got sicker after.”
Four weeks ago, Launiere had eight inches of the distal section of her small bowel taken out and has a six-inch scar on her belly to prove it.
“They opened me up pretty good,” she said. “This profession’s hard enough without having something like this.”
It’s a profession where you put in long, hard hours, travel extensively, stand on cement for entire days while recruiting club tournaments, and have the pressure of winning during your season.
“I don’t know if I have to do anything different,” Launiere said. “Just continue to be diligent with it all and hopefully, if the surgery didn’t form more scar tissue, it will be a good thing and it got a lot of the bad stuff out. The risk is that the surgery and sutures don’t form more scar tissues. But it can’t be worse than it was.”
Launiere says she’s often asked what causes Crohn’s, an illness most of the world doesn’t know about or understand.
“My lifestyle causes it,” she said. “But it’s like anything in life. You learn how to deal with it and do the best you can … Eating out on the road has been the biggest challenge. I’ve worked at it and I’ve kept attacks at bay for as long as I could, but I’ve certainly had my share of flare-ups over the years.”
Launiere, who has more than 500 victories and will coach her 28th season at Utah in 2017, was diagnosed during her junior year in high school.
This was the first major surgery she’d ever had.
“I’ve been fortunate as far as Crohn’s patients go,” Launiere said. “My issue has been the years of flare ups that have caused so much damage and ultimately so many blockages and obstructions. Any kind of flare up and I would get a blockage. Hydration is so critical for me. My players get so tired of me talking to them about hydration, but it’s so critical.”
Not coincidentally, the week before her surgery, Salt Lake City was the host for the Triple Crown Sports Invitational, a huge girls club tournament in mid-February that brought not only many of Launiere’s volleyball coaching friends to her city, but an inordinate number of top-level recruits to campus.
Eating right and resting were not on the agenda.
“I woke up sick on Sunday,” Launiere said, quick to credit the help she got that weekend from assistants JJ Van Niel and Malia Shoji. “But I recruited all day Sunday and Monday and then did visits on campus on Monday. I went home and at 1:30 in the morning that Tuesday morning went to the ER.”
For nearly 30 years, including more than 10 emergency room visits, Launiere has fought episodes with pain medication, steroids and fluids. She’d go to the hospital and she would bust out in due time without medical clearance.
“It would take a day or two at home to relax and then I’d be back at it.
“But this time they said, ‘You’re not going anywhere. This is a complete obstruction.’ And I said OK and knew I had to do this right instead of blowing it off and that’s when they did the CAT scan and saw the blockage and adhered scar tissue.”
Surgery was in order and Launiere knew it.
“I can’t keep going on prednisone all the time, I can’t keep doing that,” she admitted. “Hopefully this was the answer.”
The truth is, of course, there is no permanent answer.
No one knows that better than NC State coach Linda Hampton-Keith, who also has Crohn’s. She was diagnosed in 1999 at age 21. She had finished playing and was preparing to coach a high school team at the time.
“It was the day before my team was arriving and I was in the hospital tearing all things out of my arm and telling them I was leaving,” Hampton-Keith said with a laugh. “I was gonna show up for my first day of coaching.”
In 2011, she had major surgery, where about 16 inches of her large intestine was removed and more than an inch from the small intestine.
She laughed about how stress doesn’t help and how in the last two years she became a mom and a head college coach for the first time.
“Mine was a very high-risk pregnancy. I had to get on some medications, like prednisone, because early in the pregnancy I was having some flare ups. That was kind of terrifying, because you’re not sure what that means, and I’d already had a miscarriage.
“So the entire pregnancy it was all hands on deck and constantly planning for the worst and hoping for the best. And thank goodness we got the best.”
The best was Yaeli, her daughter who is now 2.
Hampton-Keith wasn’t so lucky herself. She was born with her intestines outside her body.
“I went through multiple surgeries (as a baby) and I don’t know if that led to the Crohn’s later in life.“
Hampton-Keith, who will start her second season in Raleigh, has undergone a major transformation in the way in which she treats her Crohn’s.
“Things changed and I don’t know if it’s from the pregnancy, but I changed medication. Now I go in for an infusion every six weeks. I sit there for a couple hours and get infused with a new medication I’m trying.
“Quite frankly, I had been injecting myself once a week with Humira for at least seven years. And this might sound odd but after seven years of injecting yourself I got really mentally fatigued. It would take me an hour to inject. It was getting to the point that even though I would do it, it was getting exhausting. I had to talk myself into it and I needed something different. I would rather go sit and have someone else poke me once every six weeks than inject myself every week.”
Yeah, it’s been quite the ride.”
Launiere had gotten to the point where she more or less knew when flare ups were coming.
“I could feel myself, when I would get really, really busy and I couldn’t eat as healthy as I should and I was on the road and the stresses were coming. I could feel when I wasn’t keeping up with the balance of the diet and the health part of it, and sure enough, inevitably, maybe it was a week later or two weeks later, I get some kind of flare up and it would be minor and I could catch it, but sometimes it would be full-blown and I would be in the emergency room.”
She figures she’s been to the ER somewhere between 10 and 15 times in those nearly 30 years she was diagnosed. A trip in 2011 while coaching a USA A2 team in Brno of the Czech Republic really sticks out. She was with Reid Sunahara, now the head coach at West Virginia, and Tim Kelly, the tour organizer for Bring It Promotions.
“I had a flare up in the night. I’m in the hotel room, I’m throwing up, I am sick,” Launiere recalled. She told them she probably needed to get to hospital.
“She felt miserable and she was in pain,” Sunahara said.
Kelly said he would try to get a doctor to her.
“He gets a doctor and they come in a little white car with a red cross on it,” Launiere said with a laugh. “The female doctor and her male assistant, they’re in their white outfits and they had little medical bags. We had a huge language barrier but basically I got them to understand I needed pain medicine to get me through the episode.
“They pulled out this huge needle and I’m sure it was morphine and it got me through the pain.”
Sunahara recalled the incident the same way.
“We knew a little. She didn’t make a big deal out of it, telling us it comes and goes, but at that point it was scary,” Sunahara said. “You never know what’s going to happen. And we didn’t really know what the disease was and come to find out it’s some serious stuff.”
Hampton-Keith missed one match because of Crohn’s when she was hospitalized. Launiere never has but should have.
Like three years ago, a day after playing at Stanford and before going to Cal, Launiere got really sick.
“I got my trainer and we took a taxi to the hospital,” she said. “The taxi had to pull over a number of times for me to get sick on the way to the hospital.”
After skipping the serve-and-pass and pre-match team meetings, Launiere still went to the match but felt sick again at the arena. Cal’s medical personnel helped her and let her rest in a quiet, dark room.
“And I came out right before and coached in the match,” she said.
Both coaches said they were glad to draw more attention to Crohn’s.
“I appreciate creating more awareness, not just for Crohn’s but anyone struggling with a chronic illness,” Hampton-Keith said. “You kind of deal with it behind the scenes and it’s an interesting dynamic, that’s for sure.”
For Launiere, her message is more about the coaching part of the equation.
“I’ve had to work at it, and I wasn’t always great at it, but worked at finding that balance of health, diet and stress level and exercise,” Launiere said. “I had to make that a priority, balancing it with this profession and I see so many young coaches that don’t do that.
“It just breaks my heart. I see so many young coaches who put weight on right away and just look so stressed and it’s brutal.”
The former president of the AVCA paused.
“Coaches need to take care of their health. “That’s the No. 1 thing that we don’t do,” Launiere said.
“I’ve seen this profession take a lot of people’s health. It’s so important for young coaches to understand how they really have to take time for themselves. Coaches give everything to their team and you can’t give everything to your team. You have to take care of yourself and your health, be it physically or mentally. I can’t stress that enough.”
For more information about Crohn’s: http://www.crohnscolitisfoundation.org/