Newsletter for February 2023
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, OM
A 501 (C) (3) nonprofit organization, (tax-deductible donations) Website www.ccosg.org
I hope this finds everyone safe and healthy. I know there have been a few cases of COVID in our neighborhood and a few of my friends have had it in the last few months. There are also a lot of colds going around. I hope everyone is being careful.
We have a few stumps to clear out, but otherwise in good shape. I know many people are still cleaning up after Hurricane Ian and it will be awhile for everything to be done. The state finally cleared all the debris on our street and in the surrounding neighborhoods in the past few weeks. Our neighborhood still has a lot of roof tarps in place. It will take a while for the roofers to be able to do their roofs. There are still more houses being built just around our neighborhood and I see more being built all along the routes I take often. I still see many businesses still closed and places being renovated. It will take some time for everything to get back to being somewhat normal.
I found these articles in the UOAA e-newsletters I receive. The Doctor and Nurse segments are also in the Phoenix magazine.
OSTOMY SURGERY SAVED MATTHEW PERRY’S LIFE. IT’S TIME TO STOP THE STIGMAS.
Excerpts from Matthew Perry’s New Memoir Show That Even TV Stars are Vulnerable to Poor Ostomy Care and Stigmas UOAA is Working to Erase.
By James Murray, UOAA President
In a preview of his new memoir, Friends star Matthew Perry reveals to People that in 2019 his colon burst from opioid abuse and that he spent two weeks in a coma before waking up unaware that he had emergency ostomy surgery to save his life.
He reveals that ‘It was pretty hellish having one because they break all the time’ which as President of the United Ostomy Associations of America (UOAA) shows me that even a Hollywood star is susceptible to poor quality of care and the ostomy stigmas our organization is fighting to end.
I had lifesaving ostomy surgery as a result of colon cancer and I am among the 725,000 to 1 million people in the United States we estimate are living with an ostomy or continent diversion. Many of us live healthy and active lives thanks to follow-up care by certified ostomy nurses, education, emotional support, and the fact that a properly fitted ostomy pouch should not break, smell or restrict your desired lifestyle.
The book also reveals that Perry’s ostomy was temporary and that his therapist said ‘The next time you think about taking OxyContin, just think about having a colostomy bag for the rest of your life’. Perry says this was the catalyst for wanting to break his long pattern of addiction.
While it’s wonderful that Perry has fought to end his addiction, these words sting for those of us who deal with the consequences of ostomy stigmas in our society. We wonder if Perry would have come to see the ostomy differently if given the chance to attend an ostomy support group or talk with another person living with an ostomy during his 9-month recovery. Did he receive information about organizations that support ostomy patients prior to discharge? Research shows that these and other UOAA standards of care can make all the difference in a patient’s outcome.
Despite the fact that ostomy surgery saves or improves lives, there are still people who believe that death is a better choice than having this surgical procedure. People of all ages struggle with body image issues and acceptance in life with an ostomy and perpetrating these stigmas can leave deep scars.
Perry also mentions looking at the scars from his 14 abdominal surgeries as motivation for ending a cycle of addiction. Perry and those interviewing him are rightly celebrating and supporting addiction recovery efforts. We ask that they also give a moment to help raise positive ostomy awareness, and share our resources available to all those in need.
James Murray is President of United Ostomy Associations of America Inc. (UOAA), a national 501(c)(3) nonprofit organization that promotes quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. Educational resources, advocacy tools, support groups, and more can be found at www.ostomy.org
Ask Dr. Beck
Dr. Beck is board certified in general and colon and rectal surgery and is a Clinical Professor of Surgery at Vanderbilt. Dr. Beck conducts research into colorectal diseases, has authored and edited nine medical textbooks and has written over 350 scientific publications. He was the President of the American Society of Colon and Rectal Surgeons (ASCRS) from 2010-2011. Dr. Beck is a nationally recognized expert in inflammatory bowel disease, anal, rectal, and colon cancer, stomas, adhesions, bowel preparation, sphincter-saving surgery for cancer, laparoscopic surgery, and postoperative pain management.
Stoma Pain
Q: I have had an ileostomy for about ten years. I have daily pain around my stoma (about 1/2”) and it is fairly painful to the touch. Years ago, I saw a pain doctor who eventually prescribed Fentanyl patches with no success. An ostomy nurse switched me to a ConvaTec barrier that ‘turtlenecks’ around the stoma which helped a lot, but the pain still exists. I definitely think it’s not a skin issue. Any ideas on the cause?
Dr. Beck: If the skin is not hypersensitive, there may be some minor nerve damage in the subcutaneous tissue. Injections of local anesthetics with long-term steroids sometimes help. Other options that may be considered are medications such as Gabapentin (Neurontin) or pregabalin (Lyrica) which act on peripheral nerves or amitriptyline which works more proximal.
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.
Filtered Pouches
I am wondering what your experience with filtered pouches is. Do they actually work? Are all the filters the same or do different brands have different filters? I don’t want to spend the extra money unless it is worth it. Thank you.
C.S.
Dear C.S.,
Frequently I’ve told my clients that if they can design a long-lasting, effective filter for an ostomy pouch, they’ll become millionaires. That tells you a little bit about my experience with existing ostomy pouch filters. Having said that, let me go into a bit more detail on each of your questions.
Do the filters work? Well, yes and no. Most people tell me that the filter on their pouch works for a day or two, which usually is how long it takes the filter to get soiled or wet. People who have colostomies that produce fairly formed stool once or twice a day should find that the pouch filter is effective for longer. If the stool is pasty or liquid, or if the pouch is used for an ileostomy, the filter will get soiled and wet more quickly, so it will be effective for a shorter period of time.
To help improve the life of your filter, be sure to use the filter cover when showering, bathing, or swimming. A wet filter is an ineffective filter.
For many years, each pouch manufacturer used a filter with a similar design: a carbon/charcoal filter, located at the top of the pouch, with a few tiny holes in the plastic of the pouch that allows gas to escape. Again, designs were similar, but exactly which filter they used and how it was attached varied by manufacturer. As stated above, with all of those pouches, people have told me either that the filters don’t work or that they don’t work after a day or so of wearing the pouch.
Things changed a few years ago. That’s when Coloplast introduced a new product to the market, called Sensura Mio. This product includes a lot of new features, including a reformulated skin barrier, a different pouch material, and a new filter. This filter looks and performs completely differently than other filters, including filters on other Coloplast products, namely Assura and Sensura. The Mio filter is circular and it includes a “pre-filter” with protects the filter from the output, so it won’t get clogged, and the filter will last longer. In my practice, I’ve actually encountered situations when this filter will be too effective. That is, it lets out so much gas that the pouch looks like it is suctioned down, onto the stoma, which hinders the stoma output from flowing freely into the pouch.
If you are currently not using a filtered pouch but would like to just try it without buying a full box, contact the pouch manufacturer by calling their customer service line or by visiting their website. Companies will gladly send you one or two filtered pouches for you to try. Also, try the Mio pouch with its circular filter. If you find it works too well, cover the filter partially to slow the gas release.
Finally, consider one other product, Osto-EZ-Vent from KEM enterprises. Some of my clients swear by this product. It is a small plastic device that attaches to your pouch. If the pouch begins to balloon, step into a restroom and unplug the device and easily vent the pouch. Visit the company’s website to request samples and learn more about how it works.
