**FAYETTEVILLE, N.C. - **When he was 11, Tom Rinkacs set the record at his Boy Scout camp for the mile swim. By the time he was 13, he was afraid to go back in the water. Crohn’s Disease will do that to a young man.
Once a promising athlete full of self-confidence, Rinkacs’ world was irreparably altered by the painful intestinal disorder and the multiple surgeries it forced him to endure.
Most of his large intestine was removed and a bag was permanently attached to a hole in his abdomen. It was a procedure, called an ileostomy, he once considered a life sentence.
Then he decided to start living again.
This time, the 39-year-old nurse practitioner from Laurinburg didn’t just jump back into the water. He also took up running and cross-country cycling.
Only four years after returning to athletic competition, Rinkacs is now an accomplished triathlete preparing to race in the prestigious IronMan of Florida next year.
“When I was younger, I always chose to do things I knew I could finish,” he said. "This triathlon stuff, I didn’t know I could finish it. I’d never done anything like it.
“I was always feeling sorry for myself and afraid of failing. But one day, I just decided not to be that way anymore. I look at things a lot more positive.”
Rinkacs’ transformation began the day his first child, a daughter named Cassie, was born in 2002. But there were other factors involved, too.
As a health care professional, he often dealt with patients who were depressed about their conditions and had given up on trying to get better.
Just as he had.
“I was, like, ‘That’s what I’m doing,’ and it kind of woke me up,” he said. “I couldn’t in good conscience tell people to do something I wasn’t willing to do myself. So I decided to get up off my butt and get going.”
The first event Rinkacs entered was a fun run, sponsored by FirstHealth Moore Regional Hospital in Pinehurst, to raise money for mammogram equipment.
He was out of shape and 40 pounds overweight at the time, but he managed to finish. He hasn’t stopped running since.
Rinkacs now works out six times a week, doing three or four loops around the Dogwood Mile at St. Andrews College each morning in addition to periodic work in the pool and on his bicycle trainer.
He competes in three triathlons a year, along with several other events.
The most special to date was the Disney World Marathon in January, when he set a best of 4:19:54 with his father and brother on hand to cheer him on.
“That meant the entire world to me,” Denis Rinckas Sr. said of his son’s performance. "Of my five sons, he had by far the most athletic potential.
“It’s just fantastic to see him compete on an even basis with all those other people that have always been healthier than him.”
It’s so impressive that others are starting to take notice.
In September, Tom Rinkacs was honored by the Crohn’s and Colitis Foundation of America as one of five regional winners of its Great Comebacks Award. He will find out if he wins the national prize early next year at a ceremony in Washington D.C.
“We get hundreds and hundreds of applications, but Thomas’ was very powerful,” said Rolf Benirschke, the former NFL kicker whose own comeback from an ileostomy inspired the award.
"This illness typically hits at a time when kids are going through a lot of other challenges and he was no exception. He wrestled with this and had a lot of bad things happen to him.
“But he persevered. He’s overcome some remarkable physical challenges.”
The first signs of trouble began to show about the time Rinkacs began middle school in the Pittsburgh suburb of North Huntington, Pa.
He was never a big kid, but when he stopped gaining weight, his parents began to worry that something might be wrong. At first, the youngster’s condition was dismissed as mononucleosis. But when his symptoms worsened to include cramping, diarrhea and rectal bleeding, he was taken for a more intensive battery of testing.
In the mean time, he was put on Prednisone, a steroid medication that made him bloated, as he described it, “like the Pillsbury Doughboy.”
Finally, a verdict was returned. His problem was Crohn’s disease, an inflammatory bowel disease that causes swelling of the intestines.
He was 14 years old.
That summer, instead of swimming, striking out opposing hitters with his trademark curve ball or doing anything else physical in nature, Rinkacs spent the entire summer in the hospital hooked up to intravenous lines, hoping to avoid surgery.
When that didn’t help, the decision was made for him to undergo the ileostomy.
“I didn’t tell anybody what kind of surgery I had,” he said, glancing down toward the floor as he relieved the painful experience. “When I was in high school, no one knew I had an ostomy. I tried not to go to gym class. I always went to a different bathroom. I did everything I could to keep it hidden.”
He was so self-conscious that before going off to college at Penn State, he tried one last attempt at returning to a “normal” life by having his ostomy reconnected.
That, however, only made things worse, especially after he refused to tell anybody when his symptoms began to return.
By the time he did, it was too late. His intestines burst, sending him back to the hospital for emergency surgery. It was the first of several times he came close to dying.
“At one point, he had seven operations in seven weeks,” his father said. “We honestly thought we were going to lose him.”
Even after he survived and went on to get his nursing degree from Carlow College, a small Catholic school in Pittsburgh, there were times he wished he hadn’t.
Things started to improve in 1996, when Rinkacs married his wife Debbie, also a nurse, and they began a family. They are expecting their second child soon. His outlook on life changed with each race he completed.
And yet like a superhero concealing his identity from the world, Rinkacs still did everything he could to hide his secret.
Then last spring, for reasons he can’t fully explain, he outed himself by applying for the Great Comebacks Award. In doing so, he wrote on his application that he wanted to become a spokesman to help others overcome the stigma of ostomy surgery.
“That’s what made the biggest impact on the judges,” Benirschke said. "I think he’s incredibly humbled that he has a healthy life now, with an incredible wife and family supporting him, and that the ostomy gave him a chance to find out who he is.
“That’s part of the healing process. The loop gets closed when you finally say, ‘You know, I’m not embarrassed about this anymore.’ You become less concerned about what others think. If you can share your story and help somebody else, you start to feel really good about yourself.”
Rinkacs said he is particularly interested in counseling young people just beginning to cope with Crohn’s Disease. He’s already scheduled for several speaking engagements in connection with his award.
“When I was 17 and 18, I went to a support group, but it was all older people and I never felt like I fit in,” he said. “I didn’t have anybody I could identify with and nobody reached out to me. If I could be that for somebody else, it would be a bigger accomplishment for me than finishing a triathlon.”
That’s saying something, considering that a standard IronMan event consists of a 2.4-mile swim - usually in open water - a 112-mile bike ride and a 26.2-mile marathon run.
It’s a 14-hour grind of constant physical activity.
Rinkacs has completed triathlons with an ostomy appliance attached to a hole in his body.
“I’m still a little conscious of it, especially with the training and stuff,” he said of the waste-collection bag, which he empties right before starting a race. “Sometimes when it’s cold, I can feel the constriction under my wet suit, but most of the time I don’t even notice it. I don’t worry about it anymore. It stays on pretty well.”
By his own research, Rinkacs is one of only a handful of Crohn’s athletes to compete in a full triathlon. Unlike most of the others, he doesn’t compete in the “physically challenged” division.
Rinkacs’ goal is to someday qualify for IronMan Hawaii, the event that inspired him to become a triathlete when he saw it on television four years ago. He’ll take a step in that direction next November in the IronMan event in Panama City, Fla.
First, though, Rinkacs is taking some time to bask in the glory of a victory already achieved.
In September, he was the guest of honor at a lavish dinner in Baltimore, where he received his Great Comebacks Award. He spent some time with Benirschke at the city’s Inner Harbor, followed around by a film crew that recorded their every move. He even got up in front of the crowd and gave a speech.
A day earlier, Rinkacs was introduced on the field at halftime of the NFL game between the Carolina Panthers and Baltimore Ravens an experience that left him “feeling like a rock star.”
More important, for the first time in his life, he said he feels thankful for being alive.
do you know him???
you would be suprise of how many of us on slowtwitch are in the same situation and have crohn diease, for me, it s been a very hard time as i was young and now, it s very unpredicatble,
good for him!
Colitis here. Not as severe (under control now), but man, do I know about the whole meindset.
Ditto here. Had to have surgery (four) and j-pouch now. Unfortunately, what was first diagnosed as Colitis turned out to be Crohn’s. But after some up and down years, I’m really making progress - this year did some sprints and Olys and will try to do a few Half IMs next year, but I do wonder how things will go / work for that length of time.
I too was amazed at how many people have either Colits or Crohn’s, especially around where I live. Atlanta seems to be the epicenter of it (not really sure of exact numbers, but there’s plenty of doctors, surgeons, etc and they go to where the demand is).
Hopefully he will continue his progress and be able to do everything he wants. 
Colits for me.
Dave
If any of you want to share your stories with others facing these diseases and surgeries, please get in touch with me. I am trying to build up a community of positive stories for people to read on my website. I have been around the IBD/Ostomy community for 20+ years, for every positive story there are many more negative ones. I’d love to see that change.
Don’t have to have had ostomy surgery to be included, in fact, I’d love to have stories from those with jpouches and other continent diversions–it seems that these are the most prevelant surgeries being done these days.
John
you can email me at ostomyathlete@hotmail.com
I’m another one with Crohn’s. I was diagnosed 28 years ago.
yo jonnyo was that before you were born? LOL
Atlanta seems to be the epicenter of it (not really sure of exact numbers, but there’s plenty of doctors, surgeons, etc and they go to where the demand is).
There used to be lots of docs in that area that participated in clinic trials for that.
i m presentely 28 years old!!! got diagnose with crohn at 12 years old and got another diagnosis for colitus at 17ish… triathlon definitly been the best thing for me in my life…it helped me a lot to the healthyer and more comfident.
Wow! I didn’t realize that there are so many athletes who have dealt with/are dealing with this illness. I’m so glad others understand.
I was diagnosed with colitis in 1992 at the age of 21. Medications kept it under control for about 4 years. I began bicycling seriously, non competitive at that time. My health and fitness improved greatly, but within the following year the disease caught up, and I landed in the hospital, eventually opting for a j-pouch and total colectomy. Recovery was quick, and I began track racing within 2-3 months after the operation. I also joined a fencing team and even went sky-diving!
Within 2 years, bouts of pouchitis became more and more frequent, and I was back on meds, which I hated, so I chose to have the J pouch removed with a permanent ileostomy. This was probably one of the most difficult but best decisions I had to make in my entire life. I was able to enjoy life, free of medications, and resume competitive cycling, this time in time trials.
Things have been great since then. Once again, I had to stop racing bikes in order to chase down a wife, and soon, race after a daughter, then a son, but now that they can keep each other occupied, I will be time trialing again.
Any other athletes out there with ostomies or IBD? I’d love to hear your experiences!
See you at the races. I’ve got a P3C in the shop (take it easy on the new guy, Cervelo haters, this is my very first post. The subject compelled me to register!) It’s being built as we speak. I hope the Sub 9 doesn’t rub too badly!
Add me in as well Crohn’s, GERD and now PEMD to go with it. NO surgeries so far due to a ton of diet and lifestyle changes.
The PEMD effects my triathlon more than anything else. I have completed 6 Ironmans since being told I had Crohn’s.
Colitis here. I was DX in early 07. I know now that I had it for years. I’m on Asacol which helps most of the time. I do have some bad days but that’s a relative term. At first I was getting depressed and ready to quit racing. Then I put up a thread on ST about colitis. I received lots of great posts and PM’s. I did my first 70.3 last year. I’m doing two maybe three 70.3’s this season.
I just want to say how impressed I am with all the triathletes that train & compete with ulcerative colitis and Crohn’s, that is very impressive.
Crohn’s for about 10 years.
three surgeries
one ileostomy
multiple Duathlons and running races. Tris this year.
Two Marathons PB 3:16:30
Many more to come.
I’m on Asacol as well for Crohn’s, which seems to be doing the trick. I’ve been asymptomatic for almost 6 years now. My doc’s keep telling me to cut back on the racing distances, but I’m still gonna do 2 IM’s this year.
About 10 years ago, I was diagnosed as being asymptomatic for Crohn’s. It was sort of a fluke that they found it (long story), but knock on wood, I haven’t had any symptoms to date and haven’t gone on any medication at the advice of doctors along the way. Are you in a similar boat with regard to being diagnosed but not seeing symptoms? Is the Asocol preventitive?
Thanks,
Steve
Is the Asocol preventitive?
Some people use it for flare (acute attack). Others use it to keep it under control (maintenance dose). It is also use in combination with other drugs for more sever attacks.
PS: Glad to hear you’re asymptomatic.
Well, since I haven’t had any flare ups in awhile, it feels like a placebo to me. I have been upping the dosage the closer this race comes, so as not to take any chances.
I’m not sure if I was misdiagnosed, but they’re not taking any chances. For now, They’ve got me off flight status, and I can’t deploy everywhere I normally go.
You are active duty military?
Wow, when they told me I had it they sent me to a Medical review board and I was given a medical retirement, that was in 1991, I guess times have really changed.
Mike
Retired from AF after 16.5 years because of Crohn’s