DECEMBER 2020

Ostomy surgery led friend 'out of the darkness of sickness'

By Deborah Rose

 

Some of the biggest life challenges we face have the ability to positively transform us.

The brother of one of my best friends personifies the metamorphosis that is possible when we allow ourselves to experience our darkest hours, yet keep our eyes fixed on what matters most – life – and embrace changes with open arms.

Now he’s putting what he’s learned into action by developing a new non-profit organization, the Ostomy Awareness Foundation.

Throughout my youth, I saw and heard about Bob’s intense health challenges. He suffered chronic abdominal pain, inflammation and a slew of other issues that caused him to regularly miss school. It all impacted his emotional health and well-being.

His failing health, which went undiagnosed for quite some time, affected everyone. Family and friends sat at his bedside at home and in the hospital and feared he may die. He came close – real close – several times.

Finally, at age 18 – after having spent the majority of his high school years in and out of the hospital – he decided to have a life-saving surgery: an ileostomy, a surgical procedure using the small intestine to create a new pathway for waste to exit the body and into a bag/pouch on the outside of the body.

A NEW BEGINNING

What is most important for those who have an ostomy, whether it is temporary or permanent, to know that it is not a hindrance or debilitating. In fact, life with an ostomy is restorative.

Bob has described his ostomy as a badge of honor because it saved his life. His surgery was one of the most significant events that has happened in his life that was positive and – after many teen years of health issues – led him out of the darkness of sickness and into the light of a healthier life.

One of the things I’ve learned from him is anything is possible with an ostomy. Ostomates can lead healthy, fulfilling lives and find support and solutions to navigate the challenges that arise at any time.

Bob’s had a permanent ostomy for nearly 30 years and has participated in activities many ostomates and non-ostomates would think would be limited or impossible.

He’s done them all: swimming, water skiing, hiking, cycling, skateboarding, snowboarding, working out, driving a professional race car and so much more. The sky is the limit.

I'm inspired by Bob's personal story and proud of what he is building. He believes that ostomates are capable of being their best selves and need to be empowered to do so.

Deborah Rose is a lifelong New Milford resident with more than 25 years in community journalism as a writer and photographer. Most recently, she served as editor of The Spectrum in New Milford, Conn. She is New Milford Poet Laureate.

SEPTEMBER 24, 2021

New Milford resident’s foundation aims to raise ostomy awareness


Published Sept. 24, 2021

Spectrum, New Milford, Conn.


By Sandra Diamond Fox

Sep. 20, 2021; Updated: Sep. 22, 2021 6:24 p.m.

Photographs courtesy of Deborah Rose

                              

NEW MILFORD — Bob Reiling began his trail of illness as a freshman at New Milford High School.

“I had overlapping symptoms of Crohn’s (disease) and ulcerative disease,” said Reiling, a lifelong New Milford resident who spent about four years in and out of the hospital as a teenager, with infections in his large intestine.

After Reiling’s intestine was removed at the age of 19, he went on to lead a healthy life and has recently created the Ostomy Awareness Foundation, an all-volunteer run nonprofit charity to spread awareness of the condition.

On Oct. 2, which is World Ostomy Day, there will be a New Milford River Run 5K and Kids’ Superhero Sprint as part of the town’s RiverFest, with proceeds going to support the cause. To sign up for the race, click here. Walkers are welcome as well.

Bringing awareness

According to the foundation’s website, ostomyawarenessfoundation.org, an ostomy is the end result of a surgical process that diverts the normal path for waste to exit the body through a new opening. There are three main types of ostomy: Colostomy, ileostomy and urostomy.

When Reiling was 18, his physicians gave him three options.

“I could try experimental medications, and that would give me a 25 percent chance of developing lymphoma cancer. I could do nothing and I’d probably die of colon cancer by the age of 30. Or, I could have the surgery to remove the diseased area and walk out of the hospital with an (ileostomy) bag,” said Reiling.

Though he initially had reservations, he chose the surgery.

Reiling, now 48, went on to lead a healthy, active life. He has four children ages 13 to 20 and works full time with the Ostomy Awareness Foundation.

It wasn’t until 2018 when he was officially diagnosed as having Crohn’s disease. It was also at the same time that he decided to spread the word about ostomy.

He began searching Facebook groups on ostomy and learned of a 10-year-old boy who had a bag and was bullied so much at school that he took his own life.

“My son was also 10 years old at the time,” Reiling said. “It couldn’t have hit home any closer. That forced me to get out of my comfort zone of being in the shadows.”

In the spring of 2020, Reiling began the process of establishing the foundation, which focuses on providing education, awareness and support to and for ostomates. The organization’s mission, as stated on the website, is “to advocate for ostomates and to educate and empower them to realize their full potential.”

The startup portion of the foundation was out of pocket, which included filing fees and licensing.

“In January, we took off,” he said.

The first big kickoff event of the foundation was its participation in the Connecticut Community Foundation’s Give Local Greater Waterbury and Litchfield Hills 36-hour online giving campaign.

This summer, the foundation received a donation “earmarked for a 5K fundraiser, so the organization immediately began planning for a 5K and connected with the New Milford RiverFest Committee to offer a 5K as part of RiverFest’s offerings,” said New Milford resident Deborah Rose, vice president of public relations for the foundation.

The foundation serves clients of all ages and from all stages of illness. To date, it has raised about $10,000 through grants, donations and fundraising.

Rose said some people who have an ostomy may be misinformed about the care for their condition or not have full knowledge of it.

“Some people are struggling. They think their life is over,” she said. “So, one of the goals that he really discovered was to change the mentality and be supportive to the people who are out there who have that negative viewpoint about this.”

This involves education on pre-education and post-education, continuing care after surgery, and the handling of mental and emotional stresses and stigmas.

The pandemic has led to an increase of virtual support groups for the condition, Reiling said.

The foundation is hoping to find a well-known figure to serve as a success story and role model for those who have the condition.

Additionally, the foundation is working with regional hospitals and health agencies to be a resource for patients on an ongoing basis, Rose said.

 “We offer several programs, one of which is the Ostomates Wellness Care Program,” Rose said. “We will provide a gift duffle bag to ostomates that includes samples of products. The bags will be distributed to ostomates through the foundation’s established relationships with clinicians in the pre-op through post-op inpatient and outpatient departments at hospitals, as well as through health agencies and skilled care and rehabilitation centers.”

Reiling said local hospitals have about 30 to 50 patients who have ostomy surgery each month. He added 90 percent of them are considered temporary, where they would only need a bag for a short period of time.

“We really just want to raise awareness that anyone who has an ostomy is an average person and there are no limitations to it,” Rose said.

sfox@milfordmirror.com

Written By

Sandra Diamond Fox

Sandi is editor of The New Milford Spectrum. She also contributes to the Danbury News-Times and to Hearst Connecticut's breaking news coverage.

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