Capital Region Ostomy Association

CAPITAL REGION OSTOMY ASSOCIATION

YOUR CAPITAL AREA OSTOMY SUPPORT GROUP FOR OVER 69 YEARS!

WWW.CAPITALREGIONOSTOMYASSOCIATION.COM Email: [email protected]

Meeting Location: American Cancer Society, 1 Penny Drive, Latham, NY 12110 NOTE: In the event of severe weather, contact ACS at (518) 220-6960

March 12, 2020 TIME: 7 PM

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If you would like to attend a meeting or would like more information, please contact us via email or the American Cancer Society Hope Club at (518) 220-6960 or contact Phyllis Gibbons at (518) 371-8368.

GUEST SPEAKER

Shawn Mc Guinness Account Manager

Byram Healthcare 2020 Meeting Dates and Speakers (as of March 1): April 9 Seth Clark, Convatec May 14 Kristen McGuinness, Coloplast June 11 Mary Bagnoli, TSA, Albany International Airport, Airport Screening July 9 Shane Forguites, Hollister August – NO MEETING September 10 Erin Macklin, Edgepark Medical Products October 8 Jody Scardillo, AMCH Wound Care Nurses November 12 Discussion by Ostomy Type, Election of 2021 Officers December Gathering (to be determined)

Association News and Meeting Agenda Our goals for 2020 are very simple. Continue to host meetings. Meetings will provide an opportunity to gather with people in a setting that is welcoming and friendly in which you can feel comfortable asking questions, listening to and learning from others who share a mutual understanding, appreciation and respect for living with an ostomy. A second goal is to get information to those who have an ostomy and cannot attend meetings. We have many that just cannot attend the meetings. This service is provided via our newsletter and web site.

Capital Region Ostomy Association

A review of our membership and mailing lists confirmed many members do no forward their dues to support the newsletter. Currently we email half of our members their announcements and we the postal service for about 47 others. If you wish to continue to receive the newsletter, please let us know and support the organization, if possible. Please send your Dues for $10 to: C.R.O.A. c/o Jim Brady, 33 Farley Drive, Rensselaer, NY 12144

What is a Recessed Stoma? A stoma generally sticks out from the side of the abdomen which helps the stoma output enter the pouch easier. A retraction of the stoma is when the stoma lays flat to the skin or below skin surface level. This retraction can become problematic as it can affect the fit of your stoma bag and cause leaks, which can lead to sore and broken skin.

In the ideal world all stomas would be sited on a flat surface of the abdomen, and protrude above the level of skin (colostomy slightly, ileostomy and urostomy by about an inch). Unfortunately some stomas are not perfect: there may be problems at the time of surgery –adequate bowel and mesentery are not able to be mobilized enough to create a ‘spout’, or in an emergency situation the patient’s abdomen has not been marked pre-operatively to select an appropriate site for the stoma; post-operatively there may be weight gain, or scar tissue from infection, or muco-cutaneous separation. These are possible causes of a retracted stoma – the resultant stoma sits either flush or below skin level, or in a skin crease, and is at risk of allowing feces or urine onto the skin surface. This results in leakage from the bag and sore skin, and causes distress and discomfort for the patient. The use of accessory products in addition to a normal stoma bag will be required in order to ensure that there is a good seal around the stoma and the bag adheres well to the skin. There are many products available to assist with managing a retracted stoma, and an experienced Stoma Care Nurse will be able to recommend an appropriate method that will

allow the patient to lead as normal a life as possible without the fear of leakage and sore skin. Reference: https://www.acpgbi.org.uk/news/a-retracted-stoma-lecture/ July 1, 2013, Liverpool, England. The Association of Coloproctology of Great Britain and Ireland Leakage is the most common problem encountered by ostomy patients. Over the year representatives from each of the major ostomy product suppliers will be attending a monthly meeting and available to answer questions. Come join us and learn!!

What type of stoma do I have?

Sometimes Patients Simply Need Other Patients


How common is bladder cancer? The American Cancer Society's estimates for bladder cancer in the United States for 2020 are: About 81,400 new cases of bladder cancer (about 62,100 in men and 19,300 in women) About 17,980 deaths from bladder cancer (about 13,050 in men and 4,930 in women) Ref date: Jan 8, 2020.

SAN FRANCISCO — In an early phase clinical trial, a new combination for the initial treatment of locally advanced or metastatic urothelial cancer has shown an unprecedented response rate and was described as "very promising" by one expert here at the Genitourinary Cancers Symposium (GUCS) 2020. The first-line pairing of enfortumab vedotin (PADCEV, Seattle Genetics/Astellas) plus pembrolizumab (Keytruda, Merck) employs two drugs that are already approved by the US Food and Drug Administration for use in later lines of treatment for this most common bladder cancer type. "We’ve never seen response rates of 73%" in cisplatin-ineligible patients, said session moderator Guru Sonpavde, MD, Dana-Farber Cancer Institute, Boston, Massachusetts, in comments to Medscape Medical News. Ref. https://www.medscape.com/viewarticle/925415 The temperature and climate of the region you live in can have a game-changing effect on how you wear your ostomy appliances. Especially useful for traveling to new climates, or for those who live in temperate zones with extreme temperatures each season, an ostomate has to adapt to these new conditions to keep a consistent wear time and maintain the reliability of their ostomy appliances. Here are some tips for managing your ostomy in warm and cold temperatures. (See sources/references at the bottom for more information on managing an ostomy.)

Winter and Cold Weather

There is indeed more concern over heat and its effects on ostomy appliances than cold. Colder climates are actually far more ideal than excessively hot temperatures when it comes to ostomy appliances, but dry air can sometimes be an issue to cause or affect the skin, causing dryness and irritation. A dry skin surface is actually the best condition for applying adhesives and ostomy appliances, but excessive dryness on any part of the skin (especially parts covered with adhesives and appliances…) are more susceptible to irritation. A solution for dry air may be to try a low-cost humidifier indoors to increase the moisture in the air. Use moderation in how much humidity you increase indoors, however, as excess moisture can cause adhesives to loosen, and can also cause issues with mold in the home. How much humidity is good?

Unprecedented Response Rate in Advanced Bladder Cancer

New Hope!

How Weather Affects an Ostomy


Sticking within a range of 30-50% relative humidity (measured with a hygrometer) is a good range to keep skin from getting too dry without overwhelming you or your home.

Hot Weather Long, hot summer days might be great for barbecues and being outdoors, but can be a real nuisance for ostomates. Hot temperatures decrease the wear times by causing skin barriers to break down faster and excess moisture on the skin. Here are some considerations for managing a stoma in hot climates: 1) Perspiration caused by heat gets between the skin and the barrier, which can cause adhesives to break down. If this is a problem with your adhesive, talk with your nurse and seek out something stronger and more reliable. You can also try an antiperspirant or powder around the ostomy location to keep from perspiration from building up. 2) If you have trouble with ostomy appliance leaks because of moisture, you can also try stoma paste or Eakin seals to create a stronger, more reliable seal. 4) Avoid using any Karaya rubber-based ostomy wafers in high heat conditions. This rubber material is soft and conformable, but in hot conditions it can break down and even melt. It’s best to use a synthetic wafer which tends to have a higher heat threshold. 5) The skin is more susceptible to breakdown when it is hot and moist. This includes the area where the ostomy appliance sits, which can form rashes because of the friction of the pouch against the skin combined with heat. An ostomy pouch cover can be work to soften this, and is also recommended for a more comfortable wear. You can typically find ostomy pouch covers in medical supply stores. 6) Due to sweating, it is especially important for Ostomates to drink more fluids to avoid dehydration. 7) Ostomates who exercise and are more active in the summer months will likely want to keep a variety of pouches, including ostomy mini-pouches and stronger, waterproof adhesives that won’t breakdown if you’re running or swimming. You may also prefer to use a Waterproof tape or elastic ostomy belt with a two-piece system to increase wear time and confidence. Ref. http://www.ostomyguide.com/hot-cold-and-stoma-how-weather-affects-an-ostomy/

We, in the Northeast, are no strangers to the effects of temperature and humidity changes and the impact weather has on our ostomy care. Come share your experiences. You may help someone in need, someone with a new ostomy, or someone who just needs to know they are not alone. Shawn Mc Guinness joined Byram earlier this year and is our new regional contact. Shawn is an Army veteran with over 20 years of sales experience in medical sales. Shawn lives in the

About our speaker and their company ……………. Byram Healthcare


Capital Region with his wife, Kristen, who many of you know as our local Coloplast representative. The local Byram Healthcare office is in White Plains, NY. Byram’s mission statement is “Be the partner of choice to help improve health outcomes and affordability of care for people living with chronic diseases.” Since 1968 Byram Healthcare has been helping to improve health outcomes and affordability of care for people managing their chronic conditions at home. Byram marketing targets include products for Diabetes, Ostomy, Urology, Incontinence, Wound Care and Breast Pumps for expecting moms. Byram Healthcare sees its role as a leader in providing ostomy supplies in the U.S. For over 50 years Byram has been helping improve the quality of life for people with ostomies. Serving the needs of patients with ostomies continues to be a focus for the company. Byram’s goal is to ensure people with ostomies resume a healthy, normal lifestyle. Their motto is “We provide Convenience, Affordability and Choice™ you and your patients can trust and expect”. Here is the link to Byram’s ostomy support section of their web site: https://www.byramhealthcare.com/healthcare-professionals/ostomy-for-healthcare-providers

New York residents will need an enhanced driver’s license or a REAL ID compatible driver’s license by October 1, 2020, if they want to use it to get on a domestic flight, enter certain federal buildings or enter military bases. With that in mind, it is highly recommended that New Yorkers who plan to travel upgrade from a standard driver’s license to a REAL ID or enhanced license get it sooner, rather than later. Transportation Security Administration officers who staff the ticket document checking station at airports will not allow travelers into the checkpoint without a REAL ID or enhanced license or another form of acceptable ID after October 1, 2020, because of a federal law (The REAL ID Act of 2005) that mandates that a REAL ID is needed for federal purposes. REAL ID is a coordinated effort by the federal government to improve the reliability and accuracy of driver licenses and identification cards. The improvements are intended to inhibit terrorists’ ability to evade detection by using fraudulent identification. To get the REAL ID star, individuals will need to visit their local New York Department of Motor Vehicles office in person and bring certain documents to prove U.S. citizenship and New York residency. Required documents include one proof of identity, one proof of legal presence, two proofs of New York residency, one proof of your social security number (bring your card if you’ve been issued one) and a current driver’s license if you are applying to exchange one issued by another U.S. state.

Residents of New York will need a REAL ID or Enhanced ID to board an airplane starting October 2020. DO NOT WAIT TILL LAST MINUTE!


Find the emotional support you need - in a group or one to one. Call for more information: (518) 220-6960

Wound Ostomy and Continence Nurses (WOCN) are located across our region. To

find a nurse near you to go: http://www.wocn.org/page/Nurse_Referral or visit our web site.

Helpful Contacts

Albany Medical Center Hospital Albany, NY 518-262-3958

Bassett Health Care Cooperstown, NY 607-547-3456

Benedictine Hospital Kingston, NY 845-437-5000

Eddy Visiting Nurse Association Capital Region 518-274-6200

Eddy Visiting Nurse Association Catskill, NY 518-945-5530

Glens Falls Hospital Glens Fall, NY 518-926-1000

Memorial Hospital Albany, NY 518-471-3321

Samaritan Hospital Troy, NY 518-271-3280

St. Mary's Hospital Amsterdam, NY 518-842-1900

St. Peter's Hospital (SPHP) Albany, NY 518-525-1980

Visiting Nurse Association - Albany Albany, NY 518-489-2681

American Cancer Society Hope Club 1-800-227-2345

Suppliers

Hollister www.hollister.com 1-888-808-7456

Coloplast www.us.coloplast.com 1-888-726-7872

Convatec www.convatec.com 1-800-422-8811

Distributors

Byram Healthcare www.byramhealthcare.com 1-877-902-9726

Edgepark Medical Products www.edgepark.com 1-800-321-0591

The information, views, and opinions provide by the group is not intended to be, nor should they be construed as medical advice. Please seek the advice of appropriate medical personnel with regards to any medical condition or treatment.

Hope Club! Many on-going weekly and monthly events

www.cancer.org/about-us/local/new-york/hope-club.html

Documents

Capital Region Ostomy Association