November 2022 Newsletter


Newsletter for November 2022


President: Jerry Downs 941-629-7568
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


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, OM

A 501 (C) (3) nonprofit organization, (tax-deductible donations) Website




Happy November, Veterans Day, and Thanksgiving



It has been a very devastating month for Floridians due to Hurricane Ian. I hope everyone is safe and that you didn’t get too much damage from the storm. We lucked out with no flooding or major damage to our home, but a lot of trees down and major cleanup. Some of our neighbors had a tree fall on their screened Lanai areas. Most of us in our neighborhood have generators and managed OK.




I found these articles in UOAA e-news and thought the information might help some of us. I also found them interesting.


Ask the Ostomy Nurse

Linda Coulter has been a Certified Wound Ostomy & Continence Nurse for 10 years. In addition to working with hundreds of people with stomas, she has trained several WOC nursing students at the R.B. Turnbull Jr. School of WOC Nursing. Linda has presented nationally and internationally on ostomy-related topics. From her home base at University Hospitals’ Ahuja Medical Center, Linda is active in raising Ostomy Awareness and works to distribute ostomy supplies to people in need throughout the world.


Strong Odor

I had urostomy surgery in 2003 for bladder cancer. I noticed quite an odor from my stoma and subsequently changed my urostomy appliance. Is that normal to have a lot of odor from the stoma?


Dear K.T.,

Thank you for this important question. Odor in the urine can have a few causes. Some, such as eating asparagus and taking B vitamins, do not indicate there is a problem. But a strong or foul odor can be a symptom of a medical issue including dehydration, urinary tract infection (UTI), uncontrolled diabetes, or another medical issue. Additionally, medications, including antibiotics like Bactrim, can also lead to a strong odor from the urine.

Urine from your stoma should be a light yellow color and with little to no odor. Dehydration will concentrate urine, causing it to be a dark yellow or gold color and to have a strong odor. Eating fruit, drinking fluids with electrolytes like coconut water, or adding electrolytes to water will help you stay hydrated. Consume more during summer months or when perspiring more.

Drinking plenty of hydrating fluids can also decrease the chance of developing a UTI. While people who have bladders may experience urinary frequency, pelvic pain, and burning during urination if they develop a UTI, people with urinary stomas or urostomies (ileal conduit, ureterostomy, Indiana pouch) will notice different signs and symptoms. These include strong or foul-smelling urine, fever, chills, nausea, vomiting, flank pain (kidney area), and fatigue. The only symptom that older individuals may demonstrate is confusion, whether they have urinary bladders or urinary stomas. Cloudy urine can also be a symptom of UTI, but it is normal for people with urostomies to have some shreds of mucous in their urine. If you suspect that you have a urinary tract infection, it is important to contact your doctor.

It’s also important to contact your doctor if your urine has a sweet or fruity odor, which is a sign of undiagnosed or uncontrolled diabetes. Liver disease and kidney stones can also cause urine to have an unusual odor and require a physician’s attention.




Words and Photos by Jessica Miles

Living with a permanent ostomy can bring on significant changes in one’s personal, social and professional life. My biggest fear around having my ostomy surgery was leakage, particularly in public, skin breakdown, and altered body image. There was a lot of trial and error in the beginning, but I have found what works for me as well as the confidence to share about it. I have always been an empath and very compassionate, however, I have now found a new passion for helping others (through my surgeon and on social media) learn how to manage their ostomy as well as how to cope with their new life. If you are willing and able to adapt, you can do anything!

In 2016, after years of unexplained symptoms, countless procedures, hospitalizations, tests, and a couple of misdiagnoses, it was confirmed that I had a genetic connective tissue disorder caused by a defect in the protein collagen. I was diagnosed with Classical type Ehlers-Danlos Syndrome. More than 90% of people with Classical EDS have mutations in the COL5A1 or COL5A2 gene. I have a mutation of the COL5A2 gene. The condition is inherited in an autosomal dominant manner. Treatment and management are focused on preventing serious complications and relieving symptoms.

Classical EDS is associated with skin hyperextensibility, joint laxity, fragile blood vessels, joint hypermobility, migraines, and joint and muscle pain. Some individuals with this subtype have a deformity of heart valves and may experience a dilatation of the aorta. In cEDS there is also an increased risk for aortic dissection. cEDS patients are prone to hernias and organ prolapse, as well as comorbidities such as autonomic dysfunction…which regulates heart rate, blood pressure, temperature, pupillary response, and digestion.

I ended up having multiple surgeries over the past four and a half years due to intestinal dysmotility, prolapses, and hernias, resulting in a port and a permanent ostomy. I now have an ascending end colostomy. While I prepared for years for the possibility of having one, I realized nothing truly prepares you for the actuality of living with a bag on your belly for the rest of your life. Though little by little, the stigma took a back seat to the reality that life with an ostomy can be just as good, if not better for some, than life without one. I suffered constantly from abdominal pain, nausea, vomiting, bloating, constipation, bowel obstructions, and malabsorption. While I still struggle with many debilitating symptoms of my disorder, I am now able to eat, gain weight and go to the bathroom regularly. Something I always took for granted until I was no longer able to do so.

My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

Though I have a constant physical reminder of my condition in the ostomy, to the rest of the world, mine is a largely invisible illness. It’s hard to describe how I feel to someone who has no idea what daily life with a chronic illness is like. I feel awful on the inside but look perfectly fine on the outside. Putting on a brave face for all to see has become a habit. My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

I’ve learned to take everything step by step and day by day. My goal is to break down the stigma of ostomies, and while it’s not always easy, to show that one can still thrive and live a happy life with chronic illness. Due to pain and fatigue, I’ve learned to budget my energy, and while I may function normally one day, I usually need to rest the next. It’s all about finding balance. I am blessed to have an amazing support system in my husband and two boys, the rest of my family and friends.

For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way.

I am a registered nurse nationally certified in inpatient obstetrics. Unfortunately due to my illness, continuous surgeries, and hospitalizations, I made the most difficult decision of my life and gave up the profession I worked so hard for and one that was a huge part of my identity. I am also an award-winning, internationally published photographer, focusing primarily on birth photography and self-portraiture. I found a new purpose, capturing laboring women and their deliveries combined both of my passions: childbirth and photography.

As a photographer, I believe that art enhances the well-being of individuals, society, and our environment and that artists have the power to heal, inspire, provoke, challenge, and offer hope. For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way. Photography allows people to see different perspectives and can be used as a tool for personal healing and positive change for many while nurturing creativity and self-expression.

My favorite quote is by the artist, Frida Kahlo. “At the end of the day, we can endure much more than we think we can.” I have definitely found this to be true and learned I am much more resilient than I ever thought I was. My illness has caused me to know myself better, which keeps my work honest and true. In the process, you truly meet yourself, which makes for better, more authentic work.

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