Lincoln Ostomy Association Meeting
Lincoln Ostomy Association is back in action 1 p.m., Nov. 3 at Bryan East Medical Plaza in Lincoln where we'll meet with a representative from Aging Services, share snacks and help each other out. The meeting is usually the first Sunday, but we decided to spice it up and do the second Sunday. Mark your calendars for the change.
Questions? Email firstname.lastname@example.org.
Get inspired by one of America's finest...US Army pilot and ostomate JR Williams
U.S. Army Chief Warrant Officer 4 Bob Cuyler is on a quest. The tactical operations officer for Task Force Falcon, 10th Mountain Division, runs a half-marathon every single week. That’s 13.1 miles in a single outing every seven days. By the end of the year, Cuyler hopes to add those distances to a total of 681.2 miles run.
For avid runners, a half-marathon a week might not seem like much. However, Cuyler runs his weekly 13.1 while deployed to Afghanistan- not an easy task given the operations tempo, altitude, and rugged terrain. Yet, Cuyler remains committed to his mileage despite the obstacles of schedule and environment. You see, the miles only make up a tiny part of a larger, personal quest.
“My plan is to raise awareness of the United Ostomy Association of America Veterans Outreach Program,” said Cuyler.
The UOAA is a national network for bowel and urinary diversion support groups in the United States. According to the UOAA, ostomies are “lifesaving surgeries performed for . . . many different diseases, injuries, and conditions.” The veterans outreach program came about to help military veterans, both young and old, live with their ostomies.
“Unfortunately, many people limit their activities because of the fear of the unknown when dealing with their ostomy,” explained Cuyler, “and others just need to know that they are not alone with this condition.”
The Hannibal, N.Y. native personally knows all about living with an ostomy. In July 2007, following a seven-year battle with ulcerative colitis, doctors removed his entire colon. The surgery left him with a stoma; an opening through his abdomen, with an appliance bag attached. It also marked the start of Cuyler’s quest for understanding.
“My first thought following the surgery was just shock,” recalled Cuyler. “I remember looking down and seeing I was cut open and this appliance was attached to me. I just couldn’t believe this was happening to me.”
At the time, this type of surgery meant a discharge from the military.
“I came back to work with the mindset that I was getting out- that it was over for me. Then, my nurse gave me this book, ‘Great Comebacks’ by Rolf Benirschke, a professional football player who continued his NFL career after his ostomy surgery,” Cuyler said.
Benirshcke’s book details the inspirational achievements and accomplishments of individuals following their ostomy surgeries. The stories encouraged Cuyler during that initial recovery period. Still, he thought the end of the road was near.
“My first day back to work was 30 days after the surgery,” said Cuyler. “I could only do one push up and one sit up. That’s it.”
Yet, each day following that first physical training session, the warrant officer discovered he could do a little bit more.
“After a couple of months, I was getting back to my old self,” said Cuyler
The book began to plant a seed in his mind.
“One day, I was working out at the gym and the brigade commander at that time, Col. Erik Peterson, gave me a funny look and asked, ‘Are you really disabled?’ And I started to wonder the same thing,” Cuyler explained.
Cuyler set his sights on continuing his Army aviation career. He focused on regaining his strength and proving he could still serve as a Soldier and pilot.
“Col. Peterson said he would support me to fight the system. He took a risk,” Cuyler recalled. “I’ll never forget that.”
According to Col. Erik Peterson, now serving as the 10th Mountain Division Chief of Staff in Regional Command-South, it was apparent from the outset that Cuyler needed to stay in the Army. “Bob was an exceptionally valuable member of the Falcon Brigade team, but what was most compelling was his determination. He had a clearly defined goal. He understood the physical and bureaucratic obstacles to that goal, and he endeavored to overcome them. The rules said “no,” but in Bob’s case they made no sense. He was clearly capable of serving and contributing, without limitation.”
The brigade surgeon at that time, Lt. Col. Edward Bailey of Sackets Harbor, N.Y., agreed.
“Bob is one of the most gratifying patients I have ever had the privilege to work with. The words no, won’t, and can’t aren’t in his vocabulary. He overcame every hurdle to return to the cockpit. A thirty day, summer rotation at JRTC convinced us that he was more than capable of returning to the fight.”
Instead of ending, it appeared the road ahead for the pilot was merely bending.
“You know, the Warrior Transition Units sometimes get a bad rap,” Cuyler pointed out. “But in my case, the Fort Drum WTU did exactly what it was supposed to do. The (organization) gave me a chance to get well. It was the best thing for me and the Army.”
Fifteen months after surgery, Cuyler hit his first milestone when a medical board cleared him to remain on active duty- with flight status.
“It was incredible. You know, I actually went to the board. I wasn’t allowed in the room during the panel, but they all saw me waiting outside the room. It was important to me, and to Col. Peterson and Lt. Col. Bailey, for the members of the board to see me for themselves, to wonder if I looked disabled,” said Cuyler.
The next benchmark immediately followed the board with a 12-month deployment to Iraq.
“A year in Iraq confirmed that his medical condition is an inconvenience, not an impediment,” said Bailey, now the 10th Mountain Division Surgeon.
The deployment not only proved that Cuyler could handle the rigors of combat with an ostomy, it marked the first time any U.S. Soldier ever deployed with an ostomy. Or, for that matter, the first time any aviator ever flew into combat with an ostomy. Yet, the path to understanding continued after his return from Iraq.
“During the deployment to Iraq, I was awarded the Tony Snow Public Service Award from the Great Comebacks program,” explained Cuyler. “Receiving that award changed things for me. Before, everything was for me. Now, I feel what it means.”
The exposure Cuyler received following the award inspired a new turn in the road.
“People hide (the disease). They’re embarrassed. A month or two after I received the award, people around the world contacted me for advice,” Cuyler said.
As each person contacted Cuyler, he shared everything he could to help: medical records, experiences, advice, hope.
“There was a pilot from India who was fighting to keep his job after his ostomy. Using my medical records as an example, he was able to prove that flying with an ostomy was possible- and done. So, he’s still flying.”
While helping a fellow pilot brought some satisfaction, Cuyler’s latest milestone impacted him a little more deeply. At the end of April, CW4 Cuyler will welcome a fellow ostomate– and Soldier– to Afghanistan.
“Lt. Col. William O’Brien first learned of my struggle to stay in the military after ostomy surgery by speaking with Lisa Becker, a Great Comebacks Award recipient. He then found me by doing the same thing I had done; did a search for “military” and “ostomy.” But, instead of finding discharge stories, he found mine.”
Down-to-earth and humble, Cuyler does not consider himself a trailblazer.
“That’s the big thing- the gratitude I feel that my despair was able to help someone else,” said Cuyler.
Realizing how his fight helped another Soldier, Cuyler decided to continue down the path toward educating others about the surgery and what to expect afterward.
“I was contacted by the UOAA about a new program, the Veterans Outreach Program, involving other Great Comeback vets to assist fellow ostomates through their recovery at Veteran Administration hospitals. Very few VA hospitals have support groups,” explained Cuyler.
Besides sharing his experiences and advice with the VOP, Cuyler raises awareness of the program doing the one thing he once thought he’d never do again- long distance running.
“I’ve been running a half-marathon every week since January,” explained Cuyler. “It’s a challenge, but it’s a challenge that helps others. For every sponsor who pledges a dollar per half-marathon or any amount really, that’s another dollar towards helping someone else.”
To date, Chief Cuyler has run 15 half-marathons. That adds up to 196.5 miles for the man who once could only perform one push up and one sit up. They also pave the start of the path toward understanding life after an ostomy.
“Bob personifies our Army Values of duty, selfless service and personal courage,” stated Peterson, who calls Watertown, N.Y. home. “It doesn’t surprise me that he’s, once again, accomplishing something very difficult in order to benefit others and call attention to something important.”
UOAA Considers Lincoln Website No. 1
Did you know this website was named the No. 1 UOAA support group website in the U.S.A. during the last national meeting? Lincoln Ostomy Association ROCKS! (just saying...)
- President Denise 402-464-7544
- Vice President Melinda 402-421-7636
- Secretary Beverly 402-525-9271
- Treasurer Val 402-489-7709
- Visitation Marie 402-750-5621
- Communications John 402-310-3496
LOA provide an ostomy visitors program which offers one-on-one support by a trained certified visitor. Visits can be made in person to the hospital, home or by telephone to answer initial concerns of the new patient. A visitor serves as a positive role model for a new ostomate. Call Sally at 402-419-8817.
Manufacturers of ostomy products often send free trials. Not every product works for every person with an ostomy. Try calling or emailing manufacturers and ask if they have a program allowing ostomates to try their products. In the meantime, here's some awesome companies that advertise free trial products:
The Lincoln Ostomy Association meets at 1 p.m. the first Sunday of most months at Bryan Health Medical Center - East. Meetings are gateways to the community, education and supplies needed by those with ostomies in the Lincoln area.
Questions occur as a new ostomate plans their first activities. Can you go back to work? Ride your bike? Will everyone figure out you’ve had a surgery just by looking at you? View the latest products and techniques to help your journey as a Nebraskan with an Ostomy.
Lincoln is blessed with great home health suppliers and medical professionals. Some accept Medicare, but it's best to call ahead. Shop local, but also consider online companies which provide everything from clothing to stoma care products.
Update your address book
Triumph Home Health Supplies has moved from Cornhusker Highway to 3838 N 63rd St., Lincoln, NE 68507. Thanks to Triumph for supporting our newsletter the Lincoln Ostomy Association Sparrow!
Lincoln reaches out to rural Nebraska
Did you know the Lincoln Ostomy Association is building resources for fellow ostomates outside Lincoln and Omaha? If you have a suggestion for additional information for the LOA or Western Nebraska website, email email@example.com. Check our Western Nebraska Ostomy resources here.
We'll walk with you through ostomy journey
Lincoln, Nebraska Ostomy Association provides tools for ostomates. According to Mayo Clinic, it takes time to be comfortable with an ostomy. Connecting with community can help.
Due to challenges with coding, determining number of people with ostomies can be tough, but a report by the United Ostomy Association estimates that 500-800,000 people have a stoma in the U.S. and 120,000 new surgeries are performed each year.
You can do many of the same activities you enjoyed before your colostomy or other ostomy surgery.
You can ask questions that you might be embarrassed to ask your doctor or nurse. And you can get tips to help you adapt to life with an ostomy.
Next Step: ostomy support...
The best way to connect is through our monthly meetings. Otherwise Lincoln, Nebraska Ostomy Association members are happy to offer more confidential support. Email firstname.lastname@example.org.