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Our next meeting is Tuesday, June 11th

The meeting will take place at 7:00 PM in the Rosalie Rendu Room, in the cafeteria. Give yourself a bit of extra time as O’Connor is now locking the doors near the cafeteria at 6:00 pm. The front doors of O’Connor are still open past 6:00 pm. Persons who have recently experienced surgery or are about to undergo surgery are encouraged to attend, as well as those who support ostomates.

Schedule of  2019 Meetings

June 11, July 9, August 13, September 10, (October 8 – Bag Change Extravaganza) , November 12, (December 10 – Holiday Party + Raffle)

Map & directions to meetings

Free Ostomy Clinic launched at SJSU Learn more

Special inserts provided by UOAA – Go to Dec 2018 insert 

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
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! If it is easier for you to mail a check, please send it to Annette Kaiser @ 183 Shelley Ave, Campbell, CA 95008. Thank you!

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.


        • 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

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.

What Happened at our December 11th Meeting

The December meeting was called by to order at 7:12 pm in the Rosalie Rendu Room by Crystal, we started a bit late due to organizing efforts for the Christmas Social. 17 people were in attendance for the meeting.

We had a short Round Robin introducing each member of our group. This has become a key part of each meeting as we understand what our members are facing and how they deal with some of the issues involved.

Crystal then began the evenings activities. People bought tickets and placed their tickets into bags in front of the items they were interested in. Crystal then with help began to draw tickets and we presented the winner with the item. A lot of fun was had by all. A fair amount of money was raised that will help with some of the expenses incurred by our group. A Special Thank you goes out to the members who simply made a donation to help out.

Bag it Away.com sent samples of their Ostaway x-Bag, an Ostomy Disposal Bab bags that were handed out, a special Thank you goes out to Eddie for sending us those samples.

Stealth Belt sent us a belt and it was raffled off. Eddy was the lucky winner! Thank you to Stealth Belt.

As 2018 winds down, and we look back on the year, we have had a number of very interesting meetings. With your help, 2019 will be better. Here is what the year will start off with:

January 8 – Stealth Belt Representative https://www.stealthbelt.com
February 12 – Zonk Thompson with https://sanitaryostomysystem.com
March 12 – Luna Physical Therapy with https://www.getluna.com

Speaking of fun. Several people have asked that we have a “Social Night” at a local adult beverage facility. We took a vote and we will be scheduling a “Ostomy Night Out in the Near Future.” The consensus was a Tuesday evening starting at 5:30PM.
If anyone has a suggestion for a location, please let me know! Crystal wants Santana Row. Looking for suggestions here! A number of people raised their hands wanting this to happen. Can we have a volunteer to chair this event?

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 next year. 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.

I am happy to announce that the Free Ostomy Clinic opened the afternoon of October 12th, 2018 at San Jose State University. They provide ostomy care to adults and children who cannot obtain this service elsewhere. Clinic hours ware from 1:30 pm  to 7:00 pm 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.

Our next meeting is January 8, 2019 in the Rosalie Rendu Room, starting at 7:00 pm.

The meeting was adjourned at 8:25 pm.
Respectfully submitted, Dave B.