2019 Meetings

What happened at our December 10th Meeting

Please NOTE:   STARTING WITH THE JANUARY MEETING, WE WILL BE MEETING IN THE de Paul Room. We will provide a map prior to the January Meeting…..

The December meeting was called by to order at 7:10 pm in the Rosalie Rendu by Jennifer, 22 people were in attendance for the meeting. We started late as this was our Holiday Party Meeting, so food and gifts were abundant and that took time to organize. 

The meeting started with discussions about what the Silicon Valley Ostomy Support group does and how we help ostomates to be, new ostomates, and ostomates with experience! 

The December Meeting is the meeting where people bring in items that are bid on by buying tickets, putting the ticket in the bag adjacent to the item they have an interest in. Then, (Drum Roll Please), Jennifer then drew the winning ticket! Items that a lot of people were the successful winner ranged from handmade blankets, wine accessories, wine and candy. I think it is safe to say, everyone had a great time!

This was a lot of fun, especially when Crystal does her dance when she is the successful bidder. Tonight, it became very special as Crystal celebrated a very special birthday. So, the group sang “Happy Birthday to her!” 

The proceeds go to help the Silicon Valley Ostomy Support Group pay the few bills that we have.

 

Tonight, we welcomed Stephanie and Michael to our group. Stephanie had stopped by several years ago, then moved, Michael is a new ostomate and a number of questions were answered! We welcome Stephanie back!

A company was mentioned. That being Vanilla Blush. This is a company that was started in 2008 in the UK. Their purpose is to provide a one-stop shop for Stoma needs when it is underwear, swimwear, sportswear, Herrniawear and simply FeelGoodwear. Please note that their sizing information is European!  Their email address is www.vblush.com. Brian Macker is their USA/North America Sales Rep – brian@vblush.com . 

Phoenix magazine has an offer going on right now that is hard to beat. They will send you a free copy of the Phoenix Magazine; call them at 1-800-750-9311 and they will make it happen! Great magazine for Ostomates!

Edgepark has a new rep. Ms. Chrissy Turpen, 1-800-321-0591 x 3431. Her email is christina.turpen@edgepark.com. If you have questions about Edgepark, here is a place to get them answered. We will try to arrange for her to come to a meeting!

San Jose State WOCN program is running a free Ostomy Clinic on Fridays, by appointment only. Clinic hours are from 1330 to 1900 on most Fridays, except school holidays and semester breaks. Clients will be seen by appointment only; clients may call the clinic appointment line at (408) 924-3422 to schedule an appointment. If a scheduler is not available to take the call, the client may leave a message and the call will be returned as soon as possible. We will issue parking passes to clients prior to or during the appointment. 

If anyone has surplus Ostomy Supplies, Friends of Ostomates Worldwide, fowusa.org would be happy to help you. Supplies can be shipped to: FOW-USA, 4018 Bishop Lane, Louisville, KY 40218-4539. FOW-USA is a 501(c)(3) non-profit organization and all donations are considered tax deductible contributions.

Meeting adjourned at 8:40 pm            Dave Bunger – SVOSG Secretary 

What happened at our November 12th Meeting

The November meeting was called by to order at 7:10 pm in the de Paul Room by Crystal, 13 people were in attendance for the meeting. O’Connor Hospital asked us to move as the Rosalie Rendu room was being used by the CEO of the hospital. We started late to give time to allow people to find us in a different room. 

We were informed of a company in England called Respond, www.respond.co.uk. Annette told us that she tried a Skin Barrier they had and it is working quite well for her. The down side is that it is expensive and then you have to pay the freight to the US. Ouch! If there is enough interest, maybe we can ask them to bulk ship to California and save some $$ that way. 

Another company was mentioned. That being Vanilla Blush. This is a company that was started in 2008 in the UK. Their purpose is to provide a one-stop shop for Stoma needs when it is underwear, swimwear, sportswear, Herrniawear and simply FeelGoodwear. Please note that their sizing information is European!  Their email address is www.vblush.com. Brian Macker is their USA/North America Sales Rep – brian@vblush.com . 

Phoenix magazine has an offer going on right now that is hard to beat. They will send you a free copy of the Phoenix Magazine; call them at 1-800-750-9311 and they will make it happen! Great magazine for Ostomates!

Next month, our December 10th meeting is slated for fun and a bit of a fund raiser. If you could bring some kind of gift, albeit, candy, knitted items, wine, ceramic items that we will bid on by way of purchasing tickets and then placing the ticket in a bag adjacent to the item that caught your fancy. This has been a lot of fun, especially when Crystal does her dance when she is the successful bidder.

The Silicon Valley Ostomy Support Group is donating to “Rotary International; End Polio Now” in Ursula Masquelier’s name, wife of Dr. Paul Masquelier, long time member of our group and our current Web Master. Ursula’s career was involved with virus identification stamp out things like those viruses (Cytomegalovirus (CMV) that were causing a high rate of blindness among AIDS Patients. This work was begun prior to the identification of AIDS. Ursula passed away November 2, 2019. 

Edgepark has a new rep. Ms. Chrissy Turpen, 1-800-321-0591 x 3431. Her email is christina.turpen@edgepark.com. If you have questions about Edgepark, here is a place to get them answered. We will try to arrange for her to come to a meeting!

Tonight, we welcomed Diana to our group. She is preparing for a Colostomy. She had a number of questions that we did our best to answer! 

A question was put to the group about who people would like to hear. Here is the list. If you know someone that would be willing to come to our meeting and talk, please let me know.

  1. Someone to talk about Emotional Support for a new Ostomate.
  2. An Ostomy (WOCN) nurse.
  3. Stealth Belt
  4. Professor Vivian Wong – Director of the San Jose State WOCN Program
  5. Chiropractor   
  6. TSA Supervisor – To talk about travel issues
  7. Surgeon
  8. Physical Therapist
  9. Any Suggestions?

San Jose State WOCN program is running a free Ostomy Clinic on Fridays, by appointment only.

I am happy to announce that the Free Ostomy Clinic opened in the afternoon of October 12th, 2018 at San Jose State University. We provide ostomy care to adults and children who cannot obtain this service elsewhere. Clinic hours are from 1:30 to 7:00 pm on most Fridays, except school holidays and semester breaks. Clients are seen by appointment only; clients may call the clinic appointment line at (408) 924-3422 to schedule an appointment. If a scheduler is not available to take the call, the client may leave a message and the call will be returned as soon as possible. We  issue parking passes to clients prior to or during the appointment. Please spread the word to those in need. Thank you to all who have donated ostomy supplies. Regards, Professor Vivian Wong, San Jose State WOCN Chair.

If anyone has surplus Ostomy Supplies, Friends of Ostomates Worldwide, fowusa.org would be happy to help you. Supplies can be shipped to: 

FOW-USA, 4018 Bishop Lane, Louisville, KY 40218-4539. FOW-USA is a 501(c)(3) non-profit organization and all donations are considered tax deductible contributions.

Meeting adjourned at 8:40 pm            Dave Bunger – SVOSG Secretary

What Happened at our October 8th Meeting

The meeting was called to order at 7:05 PM
Tonight was our Bag Change Extravaganza event!

• Cassandra from Convatec joined us tonight just to hang out and answer any related questions.
• If anyone hadn’t heard, PG&E will be doing mandatory black outs for fire prevention due to high winds.
• Avaya stadium will open be open during the power outages from 8 AM to 5 PM for people to charge their phones, have a place to relax, and get some water.
• For those who don’t watch TV or don’t have access to cable, Annette recommended getting the NBC Bay Area app to keep up-to-date with the latest Bay Area events.
• Volunteers to speak at San Jose State University WOCN training on October 27 are Virginia Y (Colo), Stevie (Uro), Jennifer (Ileo).

We had volunteers do a bag change, or walk us through a bag change, in front of the whole group. Before we started the bag changes, we went through a few announcements:

Sharon was first up with an ileostomy. She said it takes her about one minute to do her bag change. Her routine includes a shower and putting a thin ring on the wafer.

Annette was next with a colostomy. She uses a Coloplast two- piece closed end adhesive closure system. But she uses a Mio bag with a non-Mio wafer. To wash her stomal skin she uses Head and Shoulders regular shampoo because it contains zinc. Annette’s routine includes using a hair dryer on low to warm up her wafer prior to putting it on. She also uses Trio brand wafer extender because it is silicone-based.

Last up was Derek with a colostomy speaking about how he does irrigation. He’s been irrigating his stoma for about five or six years. It’s about a one hour process that he does three times a week. While sitting on the toilet, he puts 1000 cc of electrolyte water into his stoma via stoma irrigation equipment, then does some abdominal massage to help the stool pass out. (He notices that when he’s dehydrated less liquid comes out.) Derek uses a Convatec two piece closed end pouching system. After attending an irrigation session at you UOAA conference about six years ago, he decided to give it a try. He noted that WOCN’s recommend having someone with you when you first learn how to irrigate as people have fainted during the process. It is also recommended that anyone interested in learning to irrigate consult with a WOCN first or take a class to avoid any problems. He told the group that most ostomy manufacturers sell irrigation kits.

A round of applause was given to each brave person who volunteered. Following the bag change event, the floor was opened up for general discussion and to have a question and answer session.

The meeting adjourned at 8:25 PM.
Submitted by Jennifer F., Co-President

What Happened at our August 13 and September 10 Meetings 

August 13

The August meeting was called to order at 7:00pm by Jennifer in the Rosalie Rendu Room with 20 people attending.

Tonight we welcomed John Roberts, a Hollister products representative. He introduced us to Ceraplus which is a new line. The barriers are infused with ceramides which make them stick to the skin better and alto make them easier to take off. Ceramides are lipids. They are in the outer layers of skin, they are the glue that holds skin cells together. The ceramides in this line helps maintain skin, helps with itchiness and helps heal broken down skin.

A few of our members attended the United Ostomy Associations of America national conference in Philadelphia. They were not pleased with the hotel this year but otherwise it was a fantastic experience. There are several workshop tracks one can attend including tracks for pediatric, young adult and adults. There is an exhibit hall that features all the ostomy manufacturer products. A free stoma clinic where you can make an appointment with an ostomy nurse to review your stoma and they give you samples of new products that may help you. They even have a fashion show of clothing for ostomates. You can find videos of the conference on the UOAA Facebook page and on Youtube.

We were introduced to a new product called a Stomagenie which is a “patented disposable Capture Cartridge™ which will dramatically improve the quality of life for ostomates. StomaGenie® makes the pouch changing process much easier and hygiene friendly, ultimately reducing skin irritation and infection, a primary concern for ostomates, doctors, nurses and insurers.”

We opened the floor to new and soon to be new ostomates and regular members who had questions.Meeting was adjourned at 8:30 pm.

September 10

The September meeting was called to order at 7:00pm by Crystal in the Rosalie Rendu Room with 18 people attending.

Tonight we welcomed Toni Daniels, the Coloplast account manager. Toni showed us the new coloplast hernia belt and suggested we look at the youtube video demonstration to see how to measure yourself, cut to fit, and put on the coloplast belt. She also passed around the Coloplast convexflip barriers that look like a “star” and are intended for used on hernias or for people who have, shall we say, more ample, bellies. Coloplast has an educational support program called Coloplast Care for new ostomates. You are assigned a dedicated care advisor and send a travel kit and a book specific to your surgery. Mark Cassutt is the care advisor for our region. The Coloplast number is 1-888-726-7872 to enroll in the program and request your kit.

We are very excited that Annette found an organization called MedShare located in San Leandro that will take donated ostomy supplies that have more than a year before their expiry date. https://www.medshare.org/

We opened the floor to new visitors, new ostomates and members with questions.

The meeting was adjourned at 8:30pm.

Respectfully submitted by Crystal -SVOSG co-president (our secretary Dave had knee surgery and was unable to attend)

A Note Regarding  Surplus Ostomy Supplies

  • If you have ostomy supplies that you would like to donate to people in need, and if they have more than a year left on their expiration date, you can give them to 

https://www.medshare.org/

  • WESTERN REGION DISTRIBUTION CENTER
    2937 Alvarado StreetSan Leandro, CA 94577 USA

    510-567-7070  or  510-567-7071

Or  mail them to:

Ostomy 2-1-1, Inc
C/O Olivet Baptist Church
1201 NW 10th Street
Oklahoma City, Oklahoma 73106

What Happened at our July 9th Meeting

The July meeting was called to order at 7:03 pm in the Rosalie Rendu Room by Crystal, 17 people were in attendance for the meeting.  

Tonight, we welcomed Brittany Hoang, WOCN and new Masters Degree. Brittany has been with us before and we are glad to have her back. Brittany teaches new Ostomates how to deal with their device. Brittany answered numerous questions from the group. As this was her fourth time with us, she was very comfortable went into our round robin of the group. She answered various questions.  

We welcomed Charles and Kristen to our meeting.  We also welcomed Luciana and found she likes to hike, and has written an Instagram Blog, Me and Mr Crohn. Take a look, it is very interesting!

San Jose State WOCN program is asking for our help on Sunday, October 27 from 10:30am to 1:00 pm. Professor Vivian Wong, the Department Chair appreciates our help. Please contact Crystal if you would like to attend this program. This program allows nurses in the WOCN Program at San Jose State to ask questions to people who have an ostomy. We need people with a Urostomy, Ileostomy and a Colostomy to attend this program. Please let Crystal know if you can help out. They provide a nice lunch!

San Jose State WOCN program is running a free Ostomy Clinic on Fridays, by appointment only.

I am happy to announce that the Free Ostomy Clinic will be opening in the afternoon of October 12th, 2018 at San Jose State University. We will provide ostomy care to adults and children who cannot obtain this service elsewhere. Clinic hours will be from 1330 to 1900 on most Fridays, except school holidays and semester breaks. Clients will be seen by appointment only; clients may call the clinic appointment line at (408) 924-3422 to schedule an appointment. If a scheduler is not available to take the call, the client may leave a message and the call will be returned as soon as possible. We will issue parking passes to clients prior to or during the appointment. Please spread the word to those in need. Thank you to all who have donated ostomy supplies. Regards, Professor Vivian Wong, San Jose State WOCN Chair.

New business cards have been ordered and made with the right phone number and we are going to look into having a banner made.

Annette shared her recent experience of flying to Phoenix. From San Jose to Phoenix, not a problem. On her return, TSA in Phoenix made life very difficult for her. 

We are going to try to get a TSA supervisor to come to a meeting. More to follow.

Disabilities and Medical Conditions

To ensure your security, all travelers are required to undergo screening at the checkpoint. You or your traveling companion may consult the TSA officer about the best way to relieve any concerns during the screening process. You may provide the officer with the TSA notification card or other medical documentation to describe your condition. If you have other questions or concerns about traveling with a disability please contact passenger support.

You are required to undergo screening at the checkpoint by technology or a pat-down. If your TSA Pre✓® designation has been verified at a participating airport, you do not need to remove shoes, laptops, 3-1-1 liquids, belts, or light jackets during the screening process. However, if you are required to undergo additional screening for any reason, a pat-down may be required, which includes the removal of items such as shoes, belts, or light jackets. Also, TSA officers may swab your hands, mobility aids, equipment and other external medical devices to test for explosives using explosives trace detection technology.

Travelers with disabilities with TSA Pre✓® on their boarding passes will receive TSA Pre✓® on-person screening when screened in a standard lane for any reason. This may happen when the TSA Pre✓® lane is closed, for example. Carry-on baggage and other accessible property will undergo standard screening in standard lanes, including removal of laptops, 3-1-1- liquids, and CPAP/BPAP equipment.TSA Notification Card: Individuals with Disabilities and Medical Conditions 

I have the following health condition, disability or medical device that may affect my screening: 

I understand that alternate procedures providing an equivalent level of security screening are available and can be done in private. I also understand that presenting this card does not exempt me from screening. 

Information • Assistance Requests • Compliments • Complaints 

TSA Cares 

1-855-787-2227 (Federal Relay 711) Weekdays: 8 a.m. to 11 p.m. ET 

TSA-ContactCenter@tsa.dhs.gov Weekends/Holidays: 9 a.m. to 8 p.m. ET 

Hablamos Español
Automated information offered in 12 languages 

Call 72 hours prior to traveling to request the assistance of a Passenger Support Specialist (PSS) at the checkpoint. If a PSS is not available, you may ask for a Supervisory TSA Officer at the checkpoint. 

The meeting adjourned at 8:35pm.

Next Meeting will be August 13, in the Rosalie Rendu Room, located in the cafeteria at O’Connor Hospital. Meeting will start at 7:00 pm and typically goes until 8:30pm.

If anyone has surplus Ostomy Supplies, Friends of Ostomates Worldwide, fowusa.org would be happy to help you. Supplies can be shipped to: 

FOW-USA, 4018 Bishop Lane, Louisville, KY 40218-4539. FOW-USA is a 501(c)(3) non-profit organization and all donations are considered tax deductible contributions.

What Happened at our June 11th Meeting

The June meeting was called by to order at 7:00 pm in the Rosalie Rendu Room by Jennifer, 15 people were in attendance for the meeting.

First item were announcements from UOAA.

  • Support for endorsement for National Ostomy Day, (Ostomy Awareness Day) HR1106. Please contact your Congressman/woman to support this bill.
  • H.Res. 1106 (115th) was a simple resolution in the United States Congress.
    This simple resolution was introduced in the 115th Congress, which met from Jan 3, 2017 to Jan 3, 2019. Legislation not enacted by the end of a Congress is cleared from the books.
  • “H.Res. 1106 — 115th Congress: Supporting the designation of October 6, 2018, as National Ostomy Awareness Day.” www.GovTrack.us. 2018. June 23, 2019 https://www.govtrack.us/congress/bills/115/hres1106
  • UOAA National Conference is in the home of the Philly Cheese-steak sandwich! The 7th National Conference will be in Philadelphia, August 6-10, 2019. Conference Highlights are:
    • Free Stoma Clinic with WOC Nurses,
    • Ostomy Product Exhibit Hall,
    • Sessions for the New and Experienced Ostomate, Peristomal Hernia Repair, Sexuality and Intimacy, An Active Lifestyle Panel Discussion with ostomates of All Ages and Backgrounds, Caregivers, Young Adults and Pediatrics Tracks, Ostomy Buzz, Peristomal Skin Issues, Medicinal Marijuana, Travel/TSA, Probiotics and Nutrition, Local ASGs Building National Relationships.
      • There will also be a number of Social Events planned, from the President’s Reception to a Nu-Hope Fun Run.
    • To learn more about this Event click here: 2019 Annual Conference
  • San Jose State WOCN program is asking for our help on Sunday, October 27 from 10:30 to 1:00 pm. Professor Vivian Wong, the Department Chair appreciates our help. Please contact Virginia if you would like to attend this program.

San Jose State WOCN program is running a free Ostomy Clinic on Fridays, by appointment only.We will provide ostomy care to adults and children who cannot obtain this service elsewhere. Clinic hours will be from 1:30 to 7:00 on most Fridays, except school holidays and semester breaks. Clients will be seen by appointment only; clients may call the clinic appointment line at (408) 924-3422 to schedule an appointment. If a scheduler is not available to take the call, the client may leave a message and the call will be returned as soon as possible. We will issue parking passes to clients prior to or during the appointment. Please spread the word to those in need. Thank you to all who have donated ostomy supplies. Regards, Professor Vivian Wong, San Jose State WOCN Chair.

The Silicon Valley Ostomy Support Group presented flowers to Virginia and Sharon for representing our group at the Santa Clara Senior Wellness Clinic in Sunnyvale as part of some 51 booths. They spent all day Saturday, answering questions and handing out cards. To show our appreciation for what they did, both ladies received a bouquet of flowers.

Virginia and Sharon talked about their time at the Health Faire. We plan to be there next year!

We are going to have new business cards made with the right phone number and we are going to look into having a banner made.

Jennifer brought up a valuable point for all ostomates. When you get your supplies, take time to look for a lot number and date on any box of supplies you get. You do not want to buy something that is out of date!

Annette shared her recent experience of flying to Phoenix. From San Jose to Phoenix, not a problem. On her return, TSA in Phoenix made life very difficult for her.
We are going to try to get a TSA supervisor to come to a meeting. More to follow.

The meeting was adjourned at 8:12 pm.
Respectfully Submitted,
Dave B. SVOSG Secretary

What happened at our May 14th Meeting

The May meeting was called by to order at 7:00 pm in the Rosalie Rendu Room by Crystal, 15 people were in attendance for the meeting.  

This evening, we had a special guest speaker, Ms. Helynn Rueda, Senior Territory Representative for Shield Health Care. Helynn brought a number of various Shield Health Care publications such as, Ostomy Management, Living Well with an Ostomy, Skin Care for New Ostomates and a Shield Webinar Schedule: January to June. The various Webinars are still available at Sheildhealthcare.com/webinars. The June 26 webinar is, “Thrive over 65 – Nutrition Tips for Older Adults”. She also brought a flyer on how to deal with Home Health Care Agencies. Ms. Rueda handed out these publications and then answered questions from the group. We were extremely happy to have her come and speak to our group!

Crystal received the following request from Ms. Leslie Miller, a doctoral student, asking for our help by taking a survey.

Hi Crystal,
My name is Leslie Miller and I am a doctoral student at the University of Oklahoma in Norman, OK in the Department of Sociology (an equal opportunity institution). I am a former ostomate and I am interested in the experiences of ostomy patients today, especially as it relates to perceptions and experiences.
I am seeking participants to fill out my survey. This research is for my dissertation. You are receiving this request because I am recruiting participants of ostomy support groups in the U.S. and your name was listed online as the contact for your group.
I would really appreciate your participation and your ostomy group’s participation if you would not mind sharing with your members? 
You may also enter a drawing for the chance to win one of fifteen Amazon giftcards.

Please let me know if you have any questions.
Thank you so much!!
Survey link:  http://bit.ly/pewpstudy  
Study website for more information: www.pewpstudy.oucreate.com   
Best wishes,

Leslie A. Miller, M.A.
Doctoral Candidate
Department of Sociology
University of Oklahoma, Norman
lamiller@ou.edu
The University of Oklahoma is an Equal Opportunity Institution.

I took the survey, it took me about 30 minutes to complete the survey. If you can help Leslie, I am sure she would appreciate your help!

We want to welcome Doug and Kathy Stevens to our group. Doug had a Colostomy last March and is looking forward to getting back to running. Kathy is his care giver and she wants him out running as well!

Crystal then opened up a round robin discussion. Some of our new members were surprised that even “Experienced” ostomates have had problems and then found solutions. The discussion runs the gamut of what people have experienced, the Good, the Bad, and the Ugly items come up. Comments made afterwards are positive and that is why we continue to do it!

I want to Thank Anita and Virginia for caring for our sweet tooth. The treats were very good and we thank you!

Annette, our Treasurer is continuing to collect our annual dues which we decided would be $20.00/year. This then helps cover some of the costs incurred by our group. As we are not far from June, a command decision was made. Beginning at the June meeting, $10.00 would be gratefully accepted to help cover some of these costs. So if you have not done it yet, Annette would appreciate your donation to the cause! 

Virginia L. asked to some help as she arranged to man a table at the Santa Clara Wellness Clinic on Friday, May 17. The clinic will run from 10 am to 1:00 pm.

Parking:              The Senior Center will be open for regular activities and the front lot is reserved for participant parking, with the exception of anyone needing a disabled parking spot.  The best street parking will be found across Monroe Street, down Harrison and Fremont Streets.

 Restrooms:         Inside the Senior Center.

Schedule:            

        • 7am                       Senior Center opens for regular business.
        • 9:30am                 Set up and ready to go.
        • 10am                     Event begins.
        • 11am                     Box lunches delivered to booths.
        • 11:30am               $5 BBQ lunch, cash or check only, until supplies run out or the event ends.
        • 1pm                       Fair ends.

Shuttle:    New this year, with stops at Live Oak Park (near Rivermark), the Community Recreation Center, Civic Center near City Hall, and ending at the Senior Center. Shuttle times are on the back of the event flyer. Please direct people to the Info Booth if they have questions.

Thank you Ladies:

Virginia and Sharon represented our Group at the Wellness Clinic. I want to Thank both ladies for going above and beyond. They answered a lot of questions!

Hernia Repair – This is from the News Letter from the Ostomy Association of Dallas.

Surgical repairs of peristomal hernias, historically, have not met with great success. There are two main techniques used by experienced surgeons. The first is a “local repair,” where the tissues around the stoma are tightened up – the stoma is left in its original location. This has long-term success approximately a third of the time.

The second technique involves moving the stoma to another site on the abdominal wall. This works about half the time, on average.

The addition of synthetic, non-absorbable mesh to both of these repairs has improved outcomes, but concerns over infection, erosion of mesh, and fistula formation have led to only a few surgeons using mesh. Newer biologic meshes hold promise hold promise, as they are less prone to infection. Recent clinical trials and surgeon’s short-term experience are favorable.

The only non-invasive, non-surgical way to treat a peristomal hernia is to use a “hernia belt” designed for ostomates. You will need to be measured so it fits well. It is a wide, elastic belt with an opening for the stoma. Ideally, it prevents protrusion of internal bowel and fat through the opening that was originally designed to accommodate only the stoma.

Adapted from an answer given by Dr. Raffery in The Phoenix March 2011.

Our next meeting is slated for Tuesday June 11. Ms. Toni Daniels from Coloplast will be joining us and it will be an interesting meeting to hear about what is new from Coloplast!

What happened at our April 9th Meeting

The April meeting was called by to order at 7:00 pm in the Rosalie Rendu Room by Crystal, 21 people were in attendance for the meeting.  

This evening, we had a special guest speaker, Cassandra Wunschel, Convatec Representative who talked about what Convatec products are available and what is on the horizon. In addition to talking about various products, Cassandra brought numerous products that she explained in depth, then offered them for show and feel. I think that everyone at the meeting had a good understanding of the products as well as how to use them. She also explained the function of the Me+ concept that Convatec uses.  The following is from the Convatec M+ site.

To read a summary of the Convatec Presentation, Click Here.

A Note Regarding  Surplus Ostomy Supplies

Cindy Hays currently has a full garage of spare Ostomy Supplies and at the moment we seem to have more than we have room for. If you have spare supplies and want to help someone in need, mail to the following:

Ostomy 2-1-1, Inc
C/O Olivet Baptist Church
1201 NW 10th Street
Oklahoma City, Oklahoma 73106

Cookie Lady

As many of you know, Linda Sloan passed away several months ago. Linda was our “Cookie Lady” and brought tasty treats to our meeting. If someone would like to volunteer to take that on, it would be a nice help for our meetings. I am not asking you to slave at the stove, but to bring nice nibbles to the meeting. We will donate to the cookie fund so it is not coming out of your pocket! Please let me know if you could help out with this!

One of our members, Virginia Larsen has informed us that on Friday, May 17th, 2019 from 10:00 to 1:00 PM,

Be Strong, Live Long” Health & Wellness Fair”

At the Santa Clara Senior Center, we will host a table for the third annual“Be Strong, Live Long” Health & Wellness Fair”, taking place at Fremont Park, next to the Santa Clara Senior Center. We will have a 10 x 10 canopy, 1 table, 2 chairs and a table cloth. The purpose is to let people know that the Silicon Valley Ostomy Group is alive and well! This program is designed to improve health and independent living by connecting Santa Clara seniors 50+ to information, activities and services. The Health and & Wellness program includes the following services:

  1. Office visits for assessment, health education, and coaching regarding specific concerns.
  2. Social engagement, information/referral to resources, and caregiver support.
  3. Classes that provide seniors with information on relevant health topics.
  4. Screenings, clinics, support groups, and special health promotion events.

If you could volunteer an hour or two to help Virginia, please see her at our next meeting, May 14 or email Dave for her phone number, it will be a great experience!  If you have any spare ostomy supplies or old issues of the Phoenix Magazine, they would be great to give away at the fair!

Our next meeting is May 14, 2019 in the Rosalie Rendu Room, starting at 7:00 pm. 

Respectfully submitted, Dave B.

York Times Article concerning Crohn’s Disease

Five Things I Wish I’d Known Before My Chronic Illness
https://nyti.ms/2Eii97C

What Happened at our March 12th Meeting

The March meeting was called by to order at 7:02 pm in the Rosalie Rendu Room by Jennifer, 20 people were in attendance for the meeting.  

This evening, we had a special guest speaker, Palak Shah, a Physical Therapist from Luna Physical Therapy at your home. Luna Physical Therapy focuses on Orthopedic/Sports injuries, Joint pain, Senior Care, After Surgery, Back & Neck Pain and Specialty Care. Get Luna can be reached at 1-866-635-6223 or www.getluna.com to arrange an in-home visit.

Palak opened the session by asking for questions.  Lifting, Bending, Weight Gain, Hip Mobility, Lower Back Pain, all of this happens to us as we age.  What goes on as we breathe. Palak demonstrated breathing techniques that help in our daily lives. She also suggested to stand with the load equally on both feet. Palak closed by saying, “ Improve Life through Physical Therapy!”

The group responded very favorably to her presentation and asked a lot of questions.     

A Note for Spare Ostomy Supplies:

Cindy Hays currently has a full garage of spare Ostomy Supplies and at the moment we seem to have more than we have room for. If you have spare supplies and want to help someone in need, mail to the following:

Ostomy 2-1-1, Inc
C/O Olivet Baptist Church
1201 NW 10th Street
Oklahoma City, Oklahoma 73106

We want to Thank Sue Wingerter for her excellent baking skills. We greatly appreciate her efforts to make cookies for us, they were delicious!

If you take a look at our Web Site, www.svosg.org, you will see a lot of information about Ostomies and our upcoming schedule. We try to schedule speakers that can relate to people with Ostomies. We have had surgeon’s, Naturopath’s, Acupuncturists, Representative’s from various suppliers. The reason this is mentioned is to ask for your help in filling our schedule for upcoming meetings. If you know someone that would speak to our group, about anything related to the world of an Ostomate, please let me know about it so I can try to schedule it.

Our next meeting is April 9, 2019 in the Rosalie Rendu Room, starting at 7:00 pm.  

The meeting was adjourned at 8:35 pm.   

Respectfully submitted, Dave B.

What Happened at our February 12th Meeting

The February 12th meeting was called to order by Crystal at 7:02 pm in Rosalie Rendu Room at O’Connor Hospital Hospital.  19 people were in attendance.

Zonk Thompson from Sanitary Ostomy System came to make a presentation about his patented  disposal system. Zonk was in an accident that left him with peritonitis and an emergency colostomy. In the hospital the nurse cleaned his one piece the usual way by using her fingers to push the contents out of the pouch. He couldn’t believe there wasn’t a better way. So he invented a system whereby a roller pushes the contents into a disposal bag which you then throw away.  You can purchase a “Traveler” system that includes everything you need, gloves, wipes, roller attached to disposal bag, totally self contained. You can carry it with you wherever you go, fits in your purse or pocket$12.50 for one5 or more $10 each. Great for keeping in the car. There is also a kit with a reusable roller, wipes and 5 collection bags starting at $19.75. Very reasonably prices.  It occurs to me that this would be wonderful for someone with arthritis and/or pain in their hands. Find the products online at www.sanitaryostomysystem.com, 805-226-9735. Zonk is offering a buy one and get one free traveler if you agree to participate in a Beta test.

Little tip from Virginia Y. who likes to wash out her pouches.  She says to wash your reusable pouch make your own saline water with 4 cups of boiling water and 2 tsp of salt.  Cleans your pouch like new.

Stealth belt is offering us $10 off your next purchase.  Use the code Glover2K19.

Brittany Hoang, RN, WOCN is working on her Master’s Degree and asked if we would help her out by taking a survey for her research. She is researching the availability of access to out patient ostomy nurses.  Very short and painless the survey is at https://www.surveymonkey.com/r/DPCXCDS

The United Ostomy Association of America conference is August 6-10, 2019 in Philadelphia, PA. Members of our group who have gone say these conferences are well worth it. The organization is offering scholarships through the Conference Attendee Reimbursement of Expenses Sponsorship or C.A.R.E.S. program to assist with the travel and lodging expenses. The program is aimed at first time attendees and new ostomates. Call the organization to ask for an application 1-800-826-0826.

Future meeting guests:

  • March 12 –Luna Physical Therapy
  • April 9-Cassandra Wunschel Convatec Territory Manager
  • May 14-open
  • June 11-Toni Daniels Coloplast representative
  • July 9-open
  • August 13-John Roberts Hollister representative
  • September 10–open
  • October 8- Bag Change Extravaganza! A show and tell experience where volunteers show us how they manage their changes. We all learn so much.
  • November 12–open
  • December 10-Holiday Party and raffle

Meeting was adjoined at 8:30 PM

Respectfully submitted by Crystal I.

What Happened at our January 8th Meeting

The January 8th Meeting was called to order at 7:00pm in Rosalie Rendu Room at O’Connor Hospital by Crystal. Nineteen people were in attendance including 3 newcomers.

Collin from Stealthbelt.com came to make a presentation about his product which has been highly endorsed by members of our group. He began his presentation by telling us his journey to becoming an ostomate. Collin was a competitive long distance runner in high school and university. In his junior year of college he developed ulcerative colitis and had to take time off training and school to regain his health. Since his whole identity was wrapped up in being an athlete he suffered an emotional crisis besides working to regain his physical health. One of his professors told him, “only challenge produces the opportunity for greatness” which inspired Collin to overcome any obstacles and begin training again. He finished college and began working for Stealthbelt, a product he believes in. We at the meeting can attest that his work and his story are an inspiration to others.

A few things we learnt from Collin at the meeting. We all want to prevent getting a hernia or making our hernias worse. To prevent a hernia, the tighter the belt the better and core strengthening is important. Collin advocates learning the proper mechanics of movement and to find a physical therapist who specializes in functional movement. When first working on getting your strength back after surgery look up youtube videos on postnatal exercises for women who have had C sections.

After Collin’s presentation we asked our new folk if they have any questions we can help them with. Good luck to Michelle who undergoes surgery on Thursday.

Crystal asked for volunteers for panel speakers for an ostomy nurse class at San Jose State University. Eddy, Rich and Virginia volunteered.

Upcoming meetings:

February 12 – Zonk Thompson with http://sanitaryostomysystem.com

March 12 – Luna Physical Therapy http://www.getluna.com

Meeting was adjourned at 8:30pm

Respectfully submitted, Crystal I.

Addendum to minutes

After our meeting we received an email letting us know that long time group member Linda Sloan, who worked to cope with a short gut ileostomy, passed away. We will inform the group of the date of her memorial service when we hear of it. It will be in the spring or later.