Charlotte County Ostomy Support Group
A 501 (C) (3) nonprofit organization, (tax deductible donations) Website www.ccosg. org
Officers:
President: Jerry Downs………….941-629-7568…….fldowns@embarqmail,com Vice President: Ken Aukett……609-315-8115 Secretary: Lovelle Meester….612-240-2175 Treasurer: Lorelie Godbout….. 603-474-9063
Directors: Janice Creutzmann….910-382-2509 David Sandora….941-828-1076
Committees:
Newsletter: Lorelie Godbout Programs & Education: Jerry Downs, Gloria Patmore, RNET (retired)……..941-627-3077 Nancy Frank, RN, BSN, CWOCN ……………….941-629-5118 Marie Michel, RN, CWCA, CHRN, OMS………941-626-2607 Visitation: Nancy Frank, RN, BSN, CWOCN Library: Lorelie Godbout, RN (retired)
Professional Advisors:
John P. Rioux, MD, F.A.C.S. Nancy Frank, RN, BSN, CWOCN Marie Michel, RN, CWCA, CHRN, OMS
1Charlotte County Ostomy Support Group Newsletter for January 12, 2021
I hope everyone had a good holiday season and stayed safe and healthy. Here it is January 2021 and the pandemic is still going strong. We finally got the vaccines started and now there is another variant of the virus that seems to spread easier than the one before. The good news is that the vaccine will also work for that form of virus. We still have to practice the same rules–wearing masks, keeping safe distances and practicing good hygiene. I just want to wish everyone a safe, happy, healthy and a prosperous new year. I hope life will eventually get back to some form of normalcy real soon.
We lost, Bill Crandall, a member of our support group. He passed away in May of 2020. He was 99 years old and lived at South Port Square with his wife Betty. He would sometimes stop by to say hi. I don’t think he passed away from COVID. I am also wondering about Jeane Demers. Her newsletter was returned to me and I tried calling many times and just get a busy signal. If anyone knows anything, please let me or our President Jerry Downs know. Thank you.
TIPS FOR COPING IN A CRISIS
Two ostomy community leaders discuss effective ways to stay positive when times get tough.
Living through a crisis is hard for anyone, but there is an extra layer of concern for people with ostomies. Hollister sat down with two influential people in the ostomy community to find out how they cope during challenging times.
Amber Wallace is the creator of the Ostomy Diaries YouTube channel and social media platforms, and Dr. Paul Wischmeyer, MD is a critical care, perioperative, and nutrition physician at Duke University School of Medicine in Durham, North Carolina. Both Amber and Paul live with an ostomy.
Q: How can people with ostomies stay healthy both physically and emotionally when facing a crisis?
Amber: The best way to take care of your emotional health is to take care of your physical health. Continue to take your supplements. Stick to a schedule and make checklists. During a difficult time, I do the same things at the same time every day and that helps. It’s also important to get enough rest and exercise, even if you have to find a routine online. Grief and anxiety can manifest physically if you don’t put those things into practice.
Paul: I agree with taking the proper supplements. Some of us with ostomies absorb vitamins differently, so it’s important to consult your doctor before starting a regimen. Exercise is also very important. As a senior in college, I was doing research with a doctor at Mayo Clinic. One day he said, “Paul, you’re getting soft and look a little out of shape – do you want to keep getting sick? You should start running and taking better care of yourself.” I had never had anyone say that before and was motivated (and a little miffed) so I started running and ran almost every day for a year. And when that same doctor performed my tenth surgery to remove my failed ileal pouch, it took only four hours instead of eight. Afterwards he said, “Your abdomen looked like you never had surgery – your adhesions were gone! Whatever you did in the last year, you should definitely keep it up!” I haven’t stopped running and exercising since.
Q: What can we do to stay healthy if we have to travel during a health crisis?
Amber: It’s important to keep a change of ostomy supplies on your person when traveling and make sure to stay hydrated. We all have leak stories. One time I was hiking in the Great Smoky Mountains and my pouch fell off. I had to change it in a porta potty! And, of course, I use hand sanitizer constantly, especially on my phone.
Paul: I’ve had leaks on planes and have had to run to the washroom with it pouring down my leg. Never a dull moment with an ostomy some days! I keep supplies in a small kit. I also always wear an ostomy belt, which helps keep my pouch secure. When my wife and I travel now we wear masks and bleach wipe everything we have to touch.
Q: Where should people turn when having a really bad day?
Amber: Stay connected with nature and focus on things that are beautiful. Take a moment and be still. Keep grounded and turn to your faith. It’s OK to cry and let those emotions out. Recognize it, feel it, and embrace it. There’s a myth that if you ignore depression it will go away. You have to deal with it before you can move ahead. Last year after my wedding I was feeling down and didn’t know why. I was too ashamed to tell anyone. So I decided to speak to my doctor. He ran some tests and it turned out that my vitamin levels were out of whack. Never be ashamed to talk to your doctor, that’s what they’re trained in.
Paul: Well, as I shared before, exercise has been a true lifesaver for me. When I’m down I also often turn to my family. Being vulnerable is hard especially when you’re sick. I often have trouble loving myself with a body that could turn on me and threaten my life at any moment. Just a few years ago, I was sick again and needed three surgeries and a prolonged hospital stay (almost a month). My wife slept every night at my bedside in the hospital. Through that I realized that perhaps I am loveable no matter what. When feeling depressed, another resource I often use is to connect to the ostomy community on Instagram and other social media. I’ve seen so many people get support from others all over the world. It’s definitely healing to share your story…and to hear others and know you are not alone.
Q: A crisis can present problems with participating in milestone events, such as graduations and funerals. How can people still stay connected?
Amber: If it’s a death, you can honor them by the way you live your life and stay positive. That’s how you can keep their memory alive. If it’s a graduation or birthday, plan something with the person or people when you’re feeling better or the crisis is over. Connection is so important. Check-in with people, even your happy friends. You never know what they’re going through. Gratefulness works too, I write down one thing I’m grateful for each day and put it in a jar.
Paul: I agree about gratefulness. In our family, we play a game every night called “3 GOOD THINGS” where we all go around and name three good things that happened each day. At our hospital, we are spending conscious time thanking people for the little things they do. Getting out of your head and thanking someone else is so essential and therapeutic. It’s so important especially if you’re down. Gratitude is as rewarding to yourself as it is to the one you’re thanking.
This is an excerpt from “Tips for Coping in a Crisis” in the Hollister Incorporated Ostomy Learning Center.
Editor’s note: This article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.
Robin Brown and Her Crowning Glory
As reigning Mrs. Mason County, Washington, Robin Brown spreads ostomy awareness beautifully.
Tomboy turns beauty queen to inspire others
How does a wife, mother, and tomboy who loves fishing and camping find herself strutting down the runway proudly displaying her ostomy pouching system? Robin Brown, the reigning Mrs. Mason County, Washington, credits her winning the crown to taking the bait whenever the universe casts her a line.
Robin often experienced “stress tummy” through her childhood and was not diagnosed with a bowel disease until college. At age 21 she came down with septic salmonella. After an appendectomy, she lost portions of her intestines due to infection. A serious truck accident in 2014 further damaged her gut health. After over a decade of trying to manage her symptoms with medications and bowel resections, Robin underwent colostomy surgery in 2018.
“I was terrified at first, and scared of being known,” explains Robin. “I was afraid to go out, so I just didn’t.”
Though Mike, her husband of seventeen years, supported her 100 percent, she still needed something to help her heal emotionally. She got a sign from the universe when a friend invited her to join her beauty consulting team to pass the time during recovery. Back then Robin didn’t even know how to apply her own makeup, but as a certified medical assistant with a passion for dermatology, the skincare aspect of the business hooked her. Through this opportunity, she began her personal transformation to regaining her confidence.
“I discovered that when I look good, I feel better,” says Robin. “And I love helping other women feel beautiful—it’s more than makeup, it’s like creating community.”
One of her clients, whose daughter competed in beauty pageants, suggested that Robin consider competing based on her inspiring story. Just six months later, a high school friend mentioned that she was involved in the Mrs. Idaho pageant, and thought that Robin would make a great contestant.
“I wouldn’t consider myself a beauty queen,” laughs Robin. “But I couldn’t ignore the signs and I applied for the Mrs. Mason County, Washington, pageant.”
Every contestant is required to have a platform: a cause to which she volunteers her time. Still unsure how a platform around gastrointestinal disease or living with an ostomy would be received, she soon learned while conversing at a pageant Christmas party. A fellow contestant, shocked by Robin’s personal story and poise, took her aside and revealed her fear that an ostomy might be in her own future due to Crohn’s disease, and then asked for advice. Robin knew then her platform had to be gastrointestinal health and disease prevention.
Robin’s beauty, two-thumbs-up attitude, and inspiring platform impressed the judges and she won! She reached out to her surgeon for advocacy ideas and learned that some patients refuse ostomy surgery.
“It saddened me to think the stigma is so great that some people would quite literally rather die than have an ostomy,” says Robin. “There’s clearly not enough information out there, and I knew I had to be a voice.”
When a tragedy in the ostomy community reached the mainstream media in January 2019, a now more confident Robin publicly showed her support.
“I remember saying to a friend about a year ago ‘If you think I am going to be one of those girls posting on Insta with my bag out you are wrong.’ And then a year later I posted on behalf of Seven.”
In a social media video on her public page she offered to answer any questions people may have about ostomies. She even went so far as to show her stoma, which she calls “Bruce Wayne” as the Batman to her Robin.
As Mrs. Mason County she visits classrooms to discuss anti-bullying. And depending on the grade level, she talks about her ostomy. The admiration of her seven-year-old son reinforces her confidence to speak to other kids about diversity and acceptance.
“He keeps me laughing,” says Robin. “He thinks it is the greatest thing ever that his mom poops in a bag – it makes me special. I’ve spoken at his school about anti-bullying. We discussed that my ostomy makes me ‘cool-different.’”
Robin also volunteers at the Seattle Children’s Hospital to mentor kids with ostomies. She plans on doing more Facebook Live events and an online fundraiser towards Ollie Ostomy teddy bears and Shadow Buddy dolls to distribute to kids with ostomies.
This beauty queen refuses to give up her reign. She’ll compete for the Mrs. Washington crown on June 15, 2019, and hopes to triumph her way to the Mrs. America pageant in Las Vegas, where she’ll be required to wear a two-piece swimsuit.
“I’m going to bedazzle my bag and wear it proudly!” concludes Robin.
And don’t think for a moment that she’s giving up fishing. Robin is thrilled that her stoma is on the left side so it doesn’t get in the way of setting her hook. However, we have a feeling she’ll be reeling in a lot more than fish this year. We wish her the best of luck!
Follow Robin’s journey on Instagram: @robin_browns_beauty_barn
Robin Brown is the reigning Mrs. Mason County, Washington, and a beauty consultant. She lives with her husband and seven-year-old son on 10-acres in Belfair, Washington. When not working, she can be found fishing, gardening and tending her chickens.
Financial Disclosure: Robin Brown received compensation from Hollister Incorporated for her contribution to this article.
