“We help ourselves by helping others to help themselves.”

We are a volunteer-based organization dedicated to providing education, information, support and advocacy for people who have had or will have intestinal or urinary diversions.

of the Houston Area

January 2020

P.O. Box 25164 Houston, TX 77265-5164www.ostomyhouston.org

Patient Visiting and Support ServicesDoctors and WOC Nurses, please note: Upon request from a doctor, nurse, or social worker, a specially trained visitor will be asked to contact an ostomy patient by phone or visit them in person before and/or after surgery. The visitor will be matched as nearly as possible according to sex, age, and type of ostomy. The visitor does not give medical advice, and there is no charge for this service. Please contact our Visitation Coordinator, Marian Newman at 713-392-5768, or newmarian@gmail.com.

We are a health support group, a non-profit, tax-exempt, organization of volunteers whose purpose is to provide mutual aid and education to persons who have ostomies and to their families. We are a Texas non-profit corporation. Membership fees and donations are tax deductible.

Ostomy Association

2019 Advocacy Accomplishments We Can All Be Proud OfBy UOAA Advocacy Manager Jeanine Gleba

I pride myself on being an “action person” and nothing gives me greater satisfaction than checking those boxes and crossing off items on my lists to-do (daily, short-term, long-term, etc.) both in my personal life and professionally. So I get super excited at year-end when I can reflect and look back at all that UOAA has accomplished in our advocacy efforts! I’m happy to report 2019 was not an exception. Although many priorities are ongoing and I can’t actually cross them off my list, I remind myself that Rome was not built in a day and realize to make a major impact in the health care world it could take many years. The important thing for all of us to remember is that we are making progress and positive change is happening.

UOAA Ostomy Advocates at the DDNCEach year UOAA’s Advocacy Committee establishes annual goals based on the strategies outlined in UOAA’s Advocacy Agenda. We have learned that the needs of the ostomy community are fluid and more often than not, I find each year that new priorities must get added to the list. These goals and priorities keep us organized and ensure we stay focused on where we can have the most effect given our organization’s limited resources.

In no particular order and not an all-inclusive list below will give you an idea of what we worked on and accomplished in 2019. This does not include Ostomy Awareness Day efforts as they were previously shared:

In This IssueAdvocacy Accomplishments . . . . . . . . . . . . . . . . . . . . . . . . .1/3 Group News . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Holiday Luncheon . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3Flu Prevention/Flu and an Ostomy . . . . . . . . . . . . . . . . . . . . 4 What an Ostomate Should Know about Medication . . . . . . . 4Meeting Dates/Times . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5WOC Nurse Directory/Advertising . . . . . . . . . . . . . . . . . . . . 6Membership Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7Advertising Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7-8 Contact Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Completed the “Expect More: Take Control of Your Healthcare” Self-Advocacy Toolkit with Checklists

All of the parts and resources are online here. In 2019 there were 579 downloads of the resources and the ostomy supply checklist had the most downloads at 247.

Best in Practice Research Project Launched The purpose of this research project is to examine components of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights (PBOR) and demonstrate best in practice standard guidelines for ostomy care. In 2019 we collected the data, in 2020 we will conduct the data analysis phase, publish results and ideally find ways to use the results to improve patient outcomes.

Centers for Medicare and Medicaid Services (CMS) Ostomy Supply Policy

• Conducted an online survey earlier and analyzed results to better understand the issue of obtaining greater than allowable quantities for those that have a medical necessity such as a high output stoma

• Submitted comments and recommendations from UOAA to CMS for the Simplifying Documentation Initiative (SDI) and the Patients Over Paperwork Initiative to reduce burden as it relates to the ostomy supply process. (Continued on page 3)

2

Central Group News

Happy New Year! I hope all of you enjoyed the holidays and best wishes for a healthy and prosperous 2020!

The annual Holiday Luncheon at The Junior League of Houston took the place of our December monthly meeting. We enjoyed great fellowship and delicious food and I would like to extend a BIG thank you to Mary Harle for hosting us again this year— thank you Mary Harle, we had a lovely time!

Please mark your calendars for our next meeting, Monday, January 27, 2020 at the Tracy Gee Community Center. Our guest speaker is Heather Marchman from McKesson Patient Care Solutions. Heather is their Account Manager for South Central Texas. McKesson is contracted with hundreds of managed care payers nationwide and is a participating provider with Medicare and Medicaid. They also add insurance company contracts on an ongoing basis and will be happy to contact any carrier necessary to assist you in meeting your medical needs. Bring your questions to the meeting and learn about options for ordering your ostomy and medical supplies. And while you are looking at your calendar be sure and make note of our February 17th meeting with wound, ostomy and continence nurse, Kimberly Ferguson. Don’t miss this great opportunity to get your questions answered and learn about proper pouching, to paste or not to paste, how to apply stoma adhesive powder, etc. Feel free to email me your questions and/or topics you would like Kimberly to cover: Kathleen.duplessis@outlook.com.

Call to action: Help us be one of the best support groups in Houston in 2020. We are all volunteers and as an affiliated support group of the United Ostomy Associations of America, our mission is to promote quality of life for people with ostomies and continent diversions through information, support, advocacy and collaboration. Here’s where you come in. Speak up and let us know how we can help support you better. Houston ostomy groups meet monthly all around the city and we want to know the type of programs that would be helpful to you; who do you want to hear from at our meetings; do you want more round table discussions; what topics would be beneficial to you; are you interested in volunteering? Contact me or one of our board members listed on this newsletter.

I look forward to seeing you in 2020! (Meeting dates on page 4.)

Kathleen Duplessis, President, OAHA, 713-299-3180

Baytown Ostomy Support Group ended 2019 with a fantastic presentation by the Director of Colon and Rectal Surgery at Houston Methodist Baytown Hospital, Ziad Kronfol, MD, FACS, FASCRS. Dr. Kronfol did a wonderful job sharing an overview of the types of ostomies that are created along with the different types of stomas that are possible. Exploring the reasons to make an ostomy along with possible ostomy complications allowed the audience to consider the surgeon’s perspective. Dr. Kronfol finished his presentation with these considerations: a surgeon’s goal is to “make a nice stoma”; the patient will achieve a better outcome when a team approach is provided in the healthcare setting; and consider reversal of the stoma whenever appropriate.

I hope you will make plans to join Baytown Ostomy Support Group in 2020. We meet from 6–7 pm in the CRCU Community Room. (Located in Plaza 2 of the building connected to the hospital.) Our January 13 speaker will be Jay Walls, Ostomy Support Belt Designer and Business Owner. Parking is available just outside the door of our meeting room. I look forward to seeing you in the New Year!

Best regards, Cindy Barefield, RN, CWOCN 281-428-3033

Baytown Group News

Happy New Year to everyone. The Northwest Group did not hold a meeting in December.

Our January meeting will consist of our annual program planning and holiday wrap up round table. We will be meeting in a new location inside the HCA Northwest Hospital.

We will meet in the Boardroom at the other end of the hospital from where we used to. Please park in the garage (no charge) and enter via the North entrance. Go to the volunteer desk and turn left, 3rd door on the left.

We have some exciting news for this meeting so you don’t want to miss.

Billy Locke, 337-515-6354

Northwest Group News

Ostomy Association of the Houston Area January 2020

We encourage you to bring your spouse or significant other and members of your immediate family to our meetings.

The United Ostomy Associations of America (UOAA) can be contacted at:

www.ostomy.org or 800-826-0826

Sugar Land Group News

Houston Methodist Sugar Land Ostomy Support group met December 19th. Our small group took timeout from the busy holidays to decorate cookies and share our stories. Best of all we got to take our creations home to eat!

We welcomed Peter, a long time ostomate, who came to share his experience. The round table discussion hit on management of the bag with “pancaking”, opaque versus clear bags, skin care, and dietary measures. Our next meeting will be January 16th.

Joan Burnham, MSN, RN, OCN, Oncology Nurse Navigator 281-274-0188

3

Ostomy Association of the Houston Area January 2020

Help Wanted OAHA Take Steps Team Captain

Patti Suler is stepping down from the Team Captain role in the CCFA Take Steps fundraising walk after ten years. She is willing to train a replacement. The walk team is easy to organize with established online tools. It will be held at the Houston Zoo on March 28, 2020. This is a unique opportunity to represent ostomates and raise money to support research for Inflammatory Bowel Disease (IBD). IBD is the second leading cause for ostomies. If interested or seeking more information, please contact Patti Suler (contact information on the back page).

Holiday Luncheon

• We have a subcommittee comprised of medical professionals, manufacturer representatives, and patient advocates who will continue this effort in 2020.

Legislative Priorities

• Advocated on the Disability Integration Act (DIA), Removing Colorectal Screening Barriers, Ostomy Awareness Day, Step Therapy, and Competitive Bidding Program

• Released two new position statements for DIA and Opioids

• Supported the DDNC Step Therapy National Day of Advocacy

Additional Efforts to Expand Patient Bill of Rights

• Safe n Simple is now including the PBOR Wallet Card in new ostomy patient starter kits and Byram Healthcare now includes it in their ostomy educational booklet

Further Advocacy Outreach and Collaborations

• Upfront with Ostomies Column: As a result of contacting the editor of the Wound Management Prevention journal UOAA now has its own column in this clinician journal. 5 articles were published in 2019

• UOAA was invited by the CMS Quality organization to submit a new idea for the 2021 Improvement Activities used in the Merit-based Incentive Payment System. Ex-committee Member Barbara Dale and I submitted for consideration two modifications to existing improvement activities that focuses on re-evaluation of ostomy care and supplies

• Access and Care Coalition: Successfully continued to ensure Congress refrains from expanding the Medicare Competitive Bidding program to include ostomy and urological supplies

• 3,172 people downloaded the TSA Travel Communication Card

• Started efforts with OEM of LAX airport in CA to make restroom improvements for ostomy accessibility; created UOAA guidelines for United States ostomy restroom accommodations

• Between myself and members of the Advocacy Committee we authored or contributed to 18 magazine and UOAA e-newsletter articles on advocacy-related topics

Looking forward to greater achievements in 2020!

2019 Advocacy Accomplishments We Can All Be Proud Of (continued from page 1)

Ostomy Association of the Houston Area January 2020

4

Ostomates are like everyone else except when it comes to getting the flu. An ostomate with the flu is at additional risk. Influenza killed about 80,000 people in the 2017–2018 season, according to figures released by the Centers for Disease Control and Prevention. Flu killed and hospitalized more people in the United States during that season than any seasonal influenza in decades. Many providers provide vaccinations at little or no cost. Care providers and at risk groups are encouraged to get vaccinated early.

Flu and an Ostomy By Anne Marie Knudsen, CWON, MN, CNS, CFCN UOAA

Facts about the Flu The Flu is caused by a virus spreading from an infected person to the nose and throat of others. Symptoms usually appear within 2 - 3 days after being infected and a person with a fever is considered contagious for another 3–4 days. Here in the U.S. the flu season generally runs from November to April. Flu symptoms include chills, fever, dry irritated cough, nasal congestion, a sore throat, muscle aches, pain and a headache.

It is a myth when people state they got the flu from the flu shot. Why do we need the flu shot every year? For the simple reason that the flu virus keeps changing and the vaccine must be replaced. Flu shots only protect for 1 year. Flu vaccine contains NO LIVE VIRUS which means it is impossible to get the flu from the flu shot. The flu shot is 90% effective against type A and B Influenza; but remember there can be different strands which means if one does get the flu the symptoms will be milder compared to not having gotten the flu shot.

What to do as an Ostomate with the Flu

Ileostomates

Diarrhea presents a big problem. In addition to causing excessive discharge a person with an ileostomy can risk an electrolyte imbalance. If vomiting and dehydration becomes an issue the ileostomate must go to the ER earlier than later. It cannot be stressed how important it is to go to the ER as an ileostomate cannot hydrate oneself fast enough.

Urostomates

Follow the same special care and make sure to protect the kidneys. Prompt attention of distress from the Flu will make a difference.

Colostomates

Always protect the abdominal muscles if coughing or sneezing as a parastomal hernia can develop and a support belt can make a difference.

Flu Prevention Time

Central Group Meeting Schedule for 2020

January 27 (Please note: January 20th is

the Martin Luther King Holiday)February 17

March 16April 20May 11June 15

July 20August 17

September 21October 12

(Please note: This is the second Monday)

November 16

What an Ostomate Should Know About Medication n Liquid is faster acting than pills.

n The degree of compression of a tablet determines the rate the medicine is dissolved in one’s system.

n The amount of medication absorbed by the body depends on the amount of intestine available. Therefore, the type of drugs to be taken must be based on the “absorption power” you have.

n Time-release capsules are not for the ileostomate. They do not have enough time to dissolve in the short remaining intestine and are passed virtually intact.

n Time-release medicine will completely dissolve at once if alcohol is consumed with it or shortly thereafter. An overdose could result!

n Most medication is available in a variety of forms—be sure to tell your pharmacist that you have an ostomy so that he/she can provide the right form for the prescribed medication.

5

Ostomy Association of the Houston Area January 2020

Central Group

Monthly: Third Monday of the monthDate: January 27, 2020 (date changed due to MLK

Holiday) Time: 7:00 p.m.Place: Tracy Gee Community Center, 3599 Westcenter

Drive, Houston, Texas 77042, (713) 266-8193Contact: Denise Parsons 713-824-8841

rockynme2@gmail.comProgram: Heather Marchman, McKesson Patient Care Solutions

Northwest Group

Monthly: Third Wednesday of the month Date: January 15, 2020 Time: 7:00 p.m.Place: NW Medical Professional Bldg., (The Cali Bldg.)

17117 Cali Drive, Houston. We will meet in the Boardroom at the other end of the hospital from where we used to. Please park in the garage (no charge) and enter via the North entrance. Go to the volunteer desk and turn left, 3rd door on the left.

Contact: Billy Locke 337-515-6354Program: Annual program planning and roundtable

Baytown Group

Monthly: Second Monday of the monthDate: January 13, 2020 Time: 6:00 p.m. Place: Houston Methodist Baytown Hospital, Community

Resource Room, Plaza 2, 4401 Garth Road, Baytown, Texas 77521 (Parking is best from Baker Rd. Entrance to back of hospital.)

Contact: Cindy Barefield, CWOCN, 281-428-3033Program: Jay Walls, Ostomy Support Belt Designer and

Business Owner

Woodlands Pediatric Group

Monthly: Second Sunday of the MonthDate: January 12, 2020Time: 2:00 p.m.Place: Texas Children’s Hospital, The Woodlands, Inpatient

Building Contact: MaryAnne Lewis, maryannelewis@hotmail.com or

281-948-1490

Use Those Shopping CardsKroger (LB326) and Randalls (3698) return a percentage of your purchases to the Ostomy Association on a quarterly basis. For information about shopping cards, please visit the website: http://www.ostomyhouston.org/

Anniversary GiftAs you celebrate the anniversary of your ostomy surgery each year, consider making a monetary gift to the Ostomy Association. Checks should be made payable to the Ostomy Association of the Houston Area and sent to the Treasurer at the address shown below.

AmazonSmileOn your first visit to AmazonSmile (smile.amazon.com), you are prompted to select a charitable organization from the list of organizations. You can change your selection at any time. To change your charitable organization: Sign in to smile.amazon.com on your desktop or mobile phone browser. From your desktop, go to Your Account from the navigation at the top of any page, and then select the option to Change your Charity. Or, from your mobile browser, select Change your Charity from the options at the bottom of the page. Select Ostomy Association of the Houston Area as your charity.

Memorial FundDonations can be made to our Memorial Fund to memorialize or honor individuals. Checks should be made payable to the Ostomy Association of the Houston Area and sent to the address below. When sending a donation, be sure to include the name of the person being honored so that acknowledgement can be sent.

Moving? Changing Your Email Address? Please make sure we have your current contact information so we can reach you by email, U.S. mail, or phone. Send updates to

Lorette Bauarschi at lorette@bauarschilaw.com.

For Anniversary Gifts, Memorial Donations, Mailing Changes, or Sponsorships, please send all correspondence to:

Ostomy Association of the Houston Area Attn: Mike McGinity, Treasurer P. O. Box 25164 Houston, TX 77265-5164

(When sending a donation, please include the name of the person being honored so that appropriate acknowledgement can be sent.)

Opportunities and Announcements

Sugar Land Group

Monthly: Third Thursday of the month Date: January 16, 2020 Time: 6:00 p.m.Place: Houston Methodist Sugar Land Hospital Main

Conference Room A, 16655 Southwest Fwy, Sugar Land, TX 77479

Contact: Joan Burnham, MSN RN OCN, Oncology Nurse Navigator, 281-274-0188

Ostomy Association of the Houston Area January 2020

6

Each Phoenix Ostomy Magazine answers the many questions about returning to a full and active life after surgery. Topics include diet, exercise, intimacy, skin care, odor control, new products and so much more. Medical doctors and nurses offer concrete advice and solutions while personal stories show that almost anything is possible with an ostomy.

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WOC Nurse Directory

Cindy Barefield, RN, CWOCN (281) 428-3033 Houston Methodist Baytown Hospital cbarefield@houstonmethodist.org

Pat Thompson RN, BSN, CWON (281) 397-2799 Patricia.Thompson6@hcahealthcare.com

8700 Long Point Road Houston, TX 77055

Ostomy & Urological Supplies Wound CareOxygen & Respiratory Equipment Hospital Beds Wheelchairs Bedside Commodes Walkers

Bathroom Aides Mastectomy Products Compression Hosiery Orthopedic Supplies

(713) 465-2200 Fax (713) 461-5806

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To learn more about how the CeraPlus skin barrier can help support healthy skin from the start, or request a FREE sample, contact us at 1.888.808.7456 or www.hollister.com/tryCeraPlus.

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Coloplast Corp. Minneapolis, MN 55411 / 1-800-533-0464www.coloplast.us The Coloplast logo is a registered trademark of Coloplast A/S. © 2018 Coloplast Corp. All rights reserved.

“ I don’t want to be thinking about my ostomy pouch while I’m focusing on something else.”

– Mike

Brava Elastic Barrier Strip

Brava Elastic Barrier Strip XL

Improved coverage and larger adhesive areaProvides an increased feeling of security to those looking for extra security

The new Brava® Elastic Barrier Strip XL The wider shape of Brava Elastic Barrier Strip XL increases the adhesive area and fits all available SenSura® Mio barriers to improve feelings of security.

Designed for extra security Helps keep the edges of the barrier firmly in place

Supports an active lifestyleAbsorbs sweat and moisture, and keeps its elasticity during physical activities, which makes Brava Elastic Barrier Strip XL suitable for moving around in everyday life

Security to live everyday life

Mike is a Brava user who has received compensation from Coloplast to provide this information.

8

Membership ApplicationMembership in the Ostomy Association of the Houston Area requires one easy payment. Please complete the following form and mail as directed with payment as shown. Dues of $25.00 per year are payable to: Ostomy Association of the Houston Area, Attention: Treasurer P. O. Box 25164, Houston, TX 77265-5164 Date: pppppppppppppppppppppppppppppppppppppp

Name: pppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppp Phone: ppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppp

Street Address: ppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppp

City: ppppppppppppppppppppppppppppppppppppppppppppppppppppppState: ppppppppppppppppppppppppppppZIP: pppppppppppppppppppppppppppppppppppppppE-mail: (required) pppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppp

Surgery Date: pppppppppppppppppppppppppppppppppppppppppppppppppp Birth Date: ppppppppppppppppppppppppppppppppppppppppppppppppppppppppppp

Reason for surgery N Crohn’s N Ulcerative Colitis N Cancer N Birth Defects N Other ppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppp

Do you speak a foreign language? N Yes N No Foreign language spoken: pppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppp

Procedure or Relationship: To help us complete our records, please answer the following. Check all that apply. N Colostomy N Continent Ileostomy N Parent of Child with procedure N Ileostomy N Continent Urostomy N Spouse/Family Member N Urinary Diversion N Pull-Through N Physician N Other: pppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppp N Nurse

N I would like to attend meetings with the (please circle one): Central Group Baytown Group Northwest Group J-Pouch Group

N I would like to become a member but cannot pay dues at this time. (This will be kept confidential.)

I learned about the Ostomy Association from N WOC Nurse NPhysician NNewsletter NSurgical Shop N Website NOther: pppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppp

I am interested in volunteering. N Yes N No

I have enclosed an additional $pppppppppppppppppppppppppppp as a donation to support the association’s mission of helping ostomates.

Membership benefits include: Monthly Support/Information Meetings, Social Events, Monthly Newsletter

Newsletter Advertising: Please contact the President or Treasurer for advertising opportunities.

Osto Group www.ostogroup.orgProviding Ostomy Products to the Uninsured.

All you pay is shipping and handling. 877-678-6690a

https://www.facebook.com/ OstomyHouston/

Disclaimer: The information contained within this newsletter is presented expressly for informational purposes only and may not be applicable to everyone. It should not be substituted for professional medical care or attention by a qualified practitioner. Always check with your doctor if you have any questions or concerns about your condition.

9

Ostomy Association of the Houston Area January 2020

STOMASPAN is a positive solution to a difficult situation and an Ostomate’s bridge to ostomy protection. Created by an Ostomate, Stomaspan is a patent pending device that provides a bridge effect spanning ones

stoma and ostomy bag, allowing relief from an uncomfortable and painful seat belt. Stomaspan is made in the USA of durable lightweight aluminum and weighs less than a cell phone. Stomaspan slips on and off a seatbelt quickly and conveniently. Its compact size allows easy movement from one vehicle to another. It can be carried

in a briefcase, handbag or kept in your vehicle console.

Seatbelt Relief

Stomaspan sells for $57 which includes shipping within the USA. For more information or to place an order please visit our website at www.Stomaspan.com or call 713-725-5890.