Charlotte County Ostomy Support Group Newsletter for October, 2021
If anyone is interested in a luncheon meeting at Golden Corral in November,
please call 941-629-7568 and let us know
I hope everyone is staying safe and healthy. So far my husband and I have been doing well. We are continuing to be very busy.
I like the fall season with all the colors and fall recipes. I enjoy cooking and baking more in the fall. I try to prepare for the
coming holidays ahead. Here are a few articles I found in Hollister newsletter and UOAA patient archives
PATRICK MCKINNEY’S STORY: LEADING BY LIVING
By Ed Pfueller, UOAA Communications & Outreach Manager
If you’re looking for Patrick McKinney you’ll likely find him outdoors. Depending on the season, McKinney, 54, of
New Market, Maryland, can be found speeding down a ski slope, powering up a hill on his bike, tending to horses,
or photographing his daughters playing sports. That wasn’t always the case. In 1984, as a 17-year-old, while donating
at a high school blood drive, he was found to be anemic. The formerly active teen had been experiencing incontinence
with blood loss for 18-24 months and was afraid to tell anyone. After confiding in his mother and seeking a diagnosis,
a colonoscopy revealed ulcerative colitis. By his mid-twenties he found himself hospitalized several times after his body
stopped responding to conventional steroid-based therapies. In 1993 he had the first of five surgeries that over the
years eventually led to a temporary ostomy and a j-pouch. He was plagued by stricture problems and other issues with
the j-pouch. “With the j-pouch I was still going to the bathroom 15-20 times a day when it was bad,” McKinney
remembers. When another surgery was required in 2004 because his j-pouch perforated leaving him septic, his doctor
at the Cleveland Clinic prepared him for the fact that depending on how it went, McKinney could wake up
with a permanent ileostomy.
Indeed that was what happened and he experienced the struggles so many new ostomates have while trying to adjust
both mentally and physically. McKinney now says, “Getting an ostomy was the best thing that ever happened to me,
I got my life back.” McKinney credits reading Rolf Bernirschke’s book Alive & Kicking for encouraging him to not be
held back by his ostomy. “His book got my life back on a normal track. I started being an advocate and lived life again.
” McKinney recalls. McKinney wrote to Rolf and was honored to receive a Great Comebacks Eastern Region Award in
2008, which included the chance to meet the inspiring former NFL Man of the Year. Since then he has embraced
taking part in sports he had never even tried before having ostomy surgery.
McKinney’s first major post-surgery athletic challenge was competing in a half-marathon in Sonoma, California
in 2009. The success of it inspired him to try other competitive sports. A family ski trip to Colorado piqued his
interest in alpine ski racing. After entering an amateur event in 2014, he was surprised to learn his time qualified
for nationals in his age group. After that he was hooked on “running gates.” McKinney has been alpine racing ever
since and is a member of NASTAR’s Team Zardoz and the United Ski And Snowboard Association (USSA) Mid-Atlantic
Masters Ski Racing Association and trains at Montage Mountain in Scranton, PA. During the rest of the year,
McKinney can most often be found on his bicycle touring the rolling hills of rural Maryland. As a member of the
Frederick (Maryland) Pedalers Bicycle Club he rides over 3000 miles per year including events like the
Tour de Frederick and the Civil War Century. “It’s like being a kid again, wind blowing in your hair takes you back
to your teenage years,” he says. For those hesitant to try riding again McKinney advises “Being prepared helps to
put your mind at ease.” “Have a plan and know where the bathrooms are at local parks, I empty right before to go
out. The back pocket on a cycling jersey is perfect for bringing extra supplies and wipes. My ileostomy tends to not
have much output when I’m being active.” In 2019 McKinney heard that UOAA’s National Conference was coming
to Philadelphia, PA and welcomed the opportunity to see Rolf again and check out the unique event. Talking to
other ostomates at the conference inspired him to do more with UOAA. “It helped me realize this is a chance to
see what I can do, and that it is the right time to get more involved with the Frederick Area Ostomy Support
Group.” McKinney has been an active member and is now the group’s President, supporting their activities even
as in-person meetings were suspended this past year. In just the past few years he has offered his perspective as
an ostomate to nursing students at a local community college and as an ostomy patient visitor. In support of
Ostomy Awareness Day, he helped to procure proclamations from local government and organized a walk for
the Run for Resilience Ostomy 5k, a major fundraiser for the programs and services of UOAA. “Getting an
ostomy was the best thing that ever happened to me, I got my life back.” “The biggest thing is to provide some
hope. Almost everyone is devastated and so unsure about how to live through this experience,” McKinney says.
On a national level, McKinney is now a member of the United Ostomy Associations of America Education Committee.
“I try to lead through living my best life. Sharing what I can do, but also keeping in mind to listen to your body. Get
out there and walk, or ride on a bike. For most, an ostomy will not impact that, I try to be encouraging and positive.”
His advice for other ostomates looking to get active? “Your only limitation is your mind. If your doc says you are
healthy enough do it, hydrate, hydrate, and always be prepared.
Doing Good is Good for You
Make kindness part of your daily to-do list.
Finding happiness in the every day.
Even though we know isolation may be helpful right now, you might still feel emotional strain, or the disorienting
feeling of being out of control. Times like these can make us appreciate how much we rely on the structure of
routine, and how difficult it can be to lose those everyday markers of progress.
Routine is your friend
Above all else, establishing a routine is key to maintaining your day-to-day well-being. This includes getting up at
a reasonable hour, getting dressed, eating properly, fitting in some exercise, and having an achievable plan for your day.
Doing good for others is good for you
Along with your routine, moments of connection and kindness can reinvigorate you. Here are some ideas to consider:
Let someone know you are thinking of them
Drop a card or phone a neighbor to ask how they are coping. Write a letter of thanks to the workers who are
keeping our world turning. It’s lovely to receive thank.s or well wishes, and even nicer to give
Find new ways to connect with others
Teach a young relative to cook via video call or share in a virtual dinner party. Try an online round of scrabble,
backgammon, or chess with someone on the other side of the world. Keep the conversation light and aim to
maximize the laughter.
Plant a seed and nurture the seedling. Even a kitchen window box or simple indoor herb can nourish the soul.
And be a healthy addition to dinner! These self-care tips are brought to you by Sue Lennon, a respected nurse,
therapist, educator, and coach with nearly three decades of experience in Oncology Nursing, including urology
and stoma care. She has a passion for nurse-patient communication and understanding the ‘lived experience
of illness’ in order to provide truly holistic care and is a frequent speaker at international workshops and conferences.