Schedule of Upcoming Meetings
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(Virtual) September 12th, 2023 07:00 PM Pacific Time
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Zoom Meeting. For more information please contact support@svosg.org or call (408) 365-4452
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With COVID-19 health measures currently in place, meetings are virtual until further notice. In-person meetings will be re-visited as an option in 2023.
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What Happened at our August 12th Virtual Meeting
President Chloe Moody called the meeting to order at 7:05 pm. 15 people were in attendance for the zoom meeting. The main topic of this meeting was to hear ideas from members about future meeting topics and speakers. Broad participation resulted in many good suggestions and Chloe and Eric said they would also pass on interesting speaker contacts from the annual UOAA Conference they are attending August 10-12.
Suggestions were:
- Product Reps to present on any new technology (comment Stoma Genie has been well covered already, Hollister has a new aloe-infused flange for sensitive skin)
- Would like to have a physical therapist again, focus on beneficial movement, breath, posture and core strength
- Nutritionist to educate specific to ostomates’ issues, the effect of certain prescription and OTC meds on ostomies, as well as certain foods effect on different types of ostomies.
- Trade ideas with other ostomy support groups, such as those listed in Phoenix magazine and on UOAA website; possibly invite reps to join our meeting to share insights (I think this was suggested as exploring what other groups do that make them successful)
- Professional trained in dealing with the emotional, self-esteem, intimacy aspects of accepting your ostomy
- Meeting to support caregivers of ostomates
Dave has a WOCN lined up to speak to us this year, recommended by Harriett.
A round robin was next on the agenda. Issues some members are dealing with:
- new diagnosis of ulcerative colitis, and meds resulting in skin issues which finally resolved; getting acupuncture and looking for a knowledgeable nutritionist/dietician
- urostomy “seepage” very disconcerting and creating anxiety because of 2-hour commute and being on the road if leakage occurs – wonders if it is a product defect
- pouch issues with new “improved” edition of Convatec bag, reverting to “old school” product that works
- suggestion to try a leg bag (urostomy) when not going to be close to restroom, stuck in meetings, car, or flying
- new problem with leakage around ostomy due to abdominal dips, using rings to try to level out
- Iron and Potassium infusions started; medical supply provider is finally sending the correct supplies
Terry A. sent me a document called “Medications and Their Effect on Your Ostomy”, attached as pdf to this email notice. Dave B. send me this link for publication from UOAA that deals with nutrition for ostomates: https://www.ostomy.org/wp-content/uploads/2022/02/Eating_with_an_Ostomy_2022-02.pdf
Thank you both for sharing this timely information!
Meeting adjourned at 8:25pm.
Respectfully submitted,
Joanne Harris
Secretary, SVOSG
What Happened at our July 11th Virtual Meeting
President Chloe Moody called the meeting to order at 7:05 pm. 15 people were in attendance for the zoom meeting.
Steve and Raji shared their experience representing our group at the May 19, 2023 “Be Strong, Live Long” Health and Wellness Fair, sponsored by the city of Santa Clara Senior Center and Senior Advisory Commission. Over 500 people attended and there were 56 exhibitor booths. Steve said there were 3 main groups of people that approached the SVOSG table – those that were curious about what an ostomy is, people that had some idea, and those that were very familiar with it. They were busy most of the time answering questions or explaining about ostomy, ostomates, and resources available. Take-aways from this experience:
* Check your supply box beforehand! Make sure you have clips, weights, etc. to display educational materials in windy conditions
* Consider a tablecloth with SVOSG name to make booth more recognizable
* Request booth be next to other health related exhibitors, such as cancer non-profits
* Sample Phoenix and Stoma Tips publications were taken by fair attendees who may not have any practical use for them
* Many booths had tchotchkes – consider tri-fold pamphlets, branded pens or magnets with SVOSG contact info
This segued into a conversation about things we might consider to improve our visibility to those who would benefit: Creating a trifold pamphlet for future fairs and to also be placed in medical clinics and doctors’ offices; redesign business cards to include SVOSG mission, what is an ostomy, or meeting information on the back; contact local community newspapers to advertise mission and upcoming meetings.
Dave received a nice thank you for Steve and Raji from fair organizer Mallory von Kugelgen, RN, PHN. THANK YOU BOTH for representing our group at the fair!
We welcomed Robin and John, who are starting treatment discussions. We had an in-depth round robin with current members where many tips were given in response to inquiries about perastomal skin issues, effluent leakage under the wafer, supplier issues and anti-diarrheal meds. A. needs to follow-up on colonoscopy findings and D. completed chemo (Yay!).
A request was made for information about SVOSG dues. Suggested payment is $20 per year and can be sent to our Treasurer. Please make checks payable to Silicon Valley Ostomy Support Group. The dues go toward paying our membership in United Ostomy Associations of America (UOAA) and donations such as our recent gift to Youth Rally.
That said, all are welcome to join SVOSG regardless of ability to pay.
Our next zoom meeting will be on August 8, 2023 at 7:00 pm. On the agenda will be hearing your ideas for future meeting topics! Dave has kindly agreed to coordinate speakers for our meetings but we need to provide input on what topics we’d like covered! Please give thought to this as we want to hear from all of you – all suggestions are good suggestions!
Below is an interesting article that Dave sent me from Stoma Tips, written by Charlotte Foley, MS, OTR/L, CBIS, who has her own business specializing in ostomy rehabilitation. The article focuses on the benefits of having an Occupational Therapist on your team before and after surgery. She also has an interesting blog about her adventures as an ostomate, hiking in extreme conditions! Thank you for sharing this Dave as I’m sure many will find it interesting!
Meeting adjourned at 8:40pm.
Respectfully submitted,
Joanne Harris, Secretary
What Happened at our June 13th Virtual Meeting
The June 13, 2023, meeting was called to order at 7:08 pm on Zoom by Chloe Moody, newly elected President of SVOSG. 20 people were in attendance for the meeting.
Our guest speaker was Michael Gerald, Ph.D., who is a professor and counselor at the University of Utah supporting chronically ill and disabled persons to lead full lives. Michael’s main topics were the annual Youth Rally and tips on adjusting to your disability.
The Youth Rally is for 11–17-year-olds with bowel or bladder dysfunction and is held annually as a 5-day overnight camp at a college campus. Attendance dropped between 2020-2022 as it was virtual, but registration numbers are up this year, the first in-person camp since 2019. It will be held in San Diego July 10-15. Chloe and Michael attested to the educational/emotional benefits and life-long friendships made at the Youth Rally camps. Michael has been involved as either a camper or counselor since 1999 and Chloe attended from age 11 through 17.
Annette Kaiser, Treasurer, motioned and it was seconded that SVOSG donate $300 to Youth Rally, Inc. to help sponsor a camper. Youth Rally, Inc. is a 501(3)(c) organization. (Note: Registration cost is $250 for counselors and $500 for campers, plus travel expenses.). If you are interested in making a tax-deductible donation to Youth Rally, Inc. you will find that information on their website: https://youthrally.org/faq
Michael also discussed how to avoid resentment of your disability by adjusting to it through “reintegration,” such as re-engaging in activities you like and want to continue and trying new things. He also touched on issues related to body dysmorphic disorder and challenges developing intimate relationships.
Angie E., a new WOCN, joined the meeting, and feels participating will be helpful to her patients. Welcome Angie.
Terry has been dealing with some setbacks but is “fighting the good fight.” We’re with you Terry.
We do not have a speaker scheduled for the July 11 meeting but are looking forward to a full round robin discussion about any ostomy issues with the group. We also will hear from Raji and Steve about their experience as SVOSG representatives at the annual “Be Strong, Live Long” Santa Clara Health and Wellness Fair held on May 19th.
ACTION ITEM: Dave has volunteered to continue scheduling speakers for our meetings. Please be prepared to share your ideas about topics or speakers that you are interested in at the next meeting!
Meeting adjourned 8:45pm.
Respectfully submitted,
Joanne Harris, Secretary, SVOSG
What Happened at our May 9th Virtual Meeting
The May 9th meeting was called to order at 7:05 pm on Zoom by Crystal. 19 people were in attendance for the meeting.
The meeting began with a round robin discussion about issues some are having with their ostomy. We were joined by Rebekka, Anthony and Ed. We welcomed them to our group.
Crystal had her procedure in 2006. Joined SVOSG in 2007. In 2013, she was recruited by Peggy to be one of the first Co-Presidents with Jennifer. She has continued in this position. Jennifer assisted until family obligations became necessary for her to resign.
Joanne had her procedure in 2018 and joined SVOSG in 2019. Joanne has stepped up and will become our new secretary.
Rebekka had her procedure in 2022 and is having some issues with her ostomy supplier.
Jane had her procedure in 2021. She is dealing with some issues and hopefully it will improve soon.
Steve – Our consummate engineer is doing well and will represent the SVOSG at the upcoming Health Fair.
Raji – Will also be our representative at the upcoming Health Fair.
(I want to thank both Raji and Steve for continuing to carry the torch that Virginia started several years ago. Virginia is now in Portugal and enjoying her retirement with her husband.)
Ed – Volunteers with the Bladder Cancer Advocacy Network’s Survivor-to-Survivor program.
Anthony – He is doing well and enjoyed joining us.
Chloe – Chloe has been a life long ostomate and has been part of several Ostomy Support Groups. She is put her hat in the ring for president of our group.
James and Dana are preparing to go on a trip to Italy. Annette suggested getting the TSA PreCheck.
This evening we discussed that we are having an election for the Silicon Valley Ostomy Support Group. We have been a resource to people with Ostomies for a long time. A review of our By-Laws indicated that we should vote on Board Members. In order to do this right, Harriett is setting up Survey Monkey that will be sent out to all of our members. (Thanks to Crystal and Harriett as I did not know that this existed!)
For President: Crystal, Chloe
For Secretary:Joanne
For Treasurer: Annette
While it is not a Board Position, we decided that having someone be responsible for scheduling speakers to our meeting; Dave will take this on.
I will be including in the minutes, our planned schedule for the rest of the year. Please note the 7th Annual “Be Strong, Live Long Health” Health & Wellness Fair Slated for Friday, May 19th. Virginia was instrumental in this and left me with a lot of the various items she handed out at the Fair. Lunch is provided. Raji and Steve have volunteered and we thank you both!
This is an opportunity to talk to a lot of people who will have a lot of questions about Ostomies.
Meeting Adjourned at 8:28 pm
Respectfully Submitted,
Dave Bunger – Secretary – Silicon Valley Ostomy Support Group
What Happened at our April 11th Virtual Meeting
The April 11th meeting was called to order at 7:05 pm on Zoom by Crystal. 14 people were in attendance for the meeting. Tonight’s meeting was affected by regional power outages in the Bay Area. We had one member that decided to go to a Sharks hockey game because they had power and he didn’t! What a night!
This evening we discussed an upcoming event for the Silicon Valley Ostomy Support Group. We have been a resource to people with Ostomies for a long time. A review of our bylaws indicated that we should vote on Board Members. So far, we have the following people on the ballot:
For President: Crystal or Chloe
For Secretary: Dave or Joanne
For Treasurer: Annette
We encourage anyone interested in any of these positions to step forward. You can contact Harriet or Dave.
While it is not a Board Position, we decided that having a Speakers Chair to be responsible for scheduling speakers for our meetings would be a good idea and so we need interested parties to step up!
We welcomed Pritam to our group tonight. We are glad to have you join us.
I will be including in the minutes, our planned schedule for the rest of the year.
Please note the 7th Annual “Be Strong, Live Long Health” Health & Wellness Fair Slated for Friday, May 19th. Virginia was instrumental in this and left me with a lot of the various items she handed out at the Fair. Lunch is provided. Raji and Steve have volunteered and we thank you both!
This is an opportunity to talk to a lot of people who will have a lot of questions about Ostomies.
Meeting Adjourned at 8:24 pm.
Respectfully Submitted,
Dave Bunger,
Secretary
Silicon Valley Ostomy Support Group
What Happened at our March 14th Virtual Meeting
The March 14th meeting was called to order at 7:05 pm on Zoom by Crystal. 14 people were in attendance for the meeting. Tonight’s meeting was affected by regional Power Outages in the Bay Area. We had one member that decided to go to a Sharks Hockey game because they had power and he didn’t! What a night!
We welcomed Adrianna to our group tonight. We are glad to have you join us. Also, it was nice to see Joanne with us. My computer crashed some time ago and I lost her email. If you know anyone who wants to join us, please let me know and I will add them to our group.
Tonight, we enjoyed Ms. Lorie Dankers and Kylen, a TSA supervisor from Portland, Oregon. Lorie has been with us and we consider her part of our group. She is a TSA spokesperson and is extremely knowledgeable about TSA procedures. She told us that is key,” What to know, before you go”. So how can that occur? TSA Cares at 855-787-2227 is a starting place.
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 PreCheck® 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 PreCheck® on their boarding passes will receive TSA PreCheck® on-person screening when screened in a standard lane for any reason. This may happen when the TSA PreCheck® 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.
Inform the TSA Officer
Inform the TSA officer if you have an ostomy pouch attached to your body and where it is located before the screening process begins. You may provide the officer with the TSA notification card or other medical documentation to describe your condition.
Screening in Standard Lanes
Passengers with an ostomy in standard lanes can be screened without having to remove, empty or expose the ostomy by advanced imaging technology, metal detector, or a pat-down. If the standard lane does not have advanced imaging technology or if you are eligible for expedited screening, you may be screened by a walk-through metal detector.
The ostomy pouch is subject to additional screening, and may require you to conduct a self pat-down of the ostomy pouch outside of your clothing, followed by a test of your hands for any trace of explosives. You may also undergo a pat-down of the areas that will not include the ostomy pouch. Pat-downs are conducted by a TSA officer of the same gender.
Screening involving a sensitive area may be conducted in private with a companion or other individual of your choice. You may request screening in private at any time.
Screening in TSA PreCheck® Lanes
Passengers with an ostomy in TSA PreCheck® lanes can be screened without having to remove, empty or expose the ostomy by advanced imaging technology (if available), metal detector or a pat-down.
If you are unable to conduct a pat-down of your device, TSA officers will test your hands for explosives. TSA officers will resolve positive tests using other screening methods including a full pat-down (without touching the ostomy) and inspection of your property. Pat-downs are conducted by a TSA officer of the same gender.
Screening involving a sensitive area may be conducted in private with a companion or other individual of your choice. You may request screening in private at any time.
I will be including in the minutes, our planned schedule for the rest of the year. Please note the 7th Annual “Be Strong, Live Long Health” Health & Wellness Fair Slated for Friday, May 19th. Virginia was instrumental in this and left me with a lot of the various items she handed out at the Fair. Lunch is provided. Raji and Steve have volunteered and we thank you both!
This is an opportunity to talk to a lot of people who will have a lot of questions about Ostomies.
Next month, we are going to have nominations for Board Positions with our Group. No one person can do it all and so it takes people to make it happen. Please give thought to stepping up and getting involved in the Best Ostomy Support Group in the Country!
Meeting Adjourned at 8:36 pm
Respectfully Submitted,
Dave Bunger – Secretary – Silicon Valley Ostomy Support Group
What Happened at our February 14th Virtual Meeting
Happy Valentines Day
The February 14th meeting was called to order at 7:07 pm on Zoom by Crystal. 21 people were in attendance for the meeting.
Tonight, was a first for the Silicon Valley Ostomy Support Group. Joining us was Cheryl Ory, President of the United Ostomy Associations of America, (UOAA).
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Cheryl explained to us what she wants to do to make UOAA better. Strengthen the Support Groups throughout America. To improve the many committees within UOAA and improve UOAA Advocacy.
UOA was the original organization and that changed into UOAA officially in 2005. Take a look at www.Ostomy.org for information about Ostomates and things you can do with one!
Cheryl talked about the upcoming National Conference in Houston slated for August 10-12. To help, UOAA has offered a scholarship for the conference.
SPECIAL EVENT
JOIN US FOR UOAA’S 8TH NATIONAL CONFERENCE.
Discover your people at our National Conference. Free Stoma Clinic, Ask Questions of Ostomy Experts, Ostomy Product Exhibit Hall, Social Events and more!
CONFERENCE Attendee
REIMBURSEMENT OF EXPENSES SCHOLARSHIP
- UOAA’s Conference Attendee Reimbursement of Expenses Scholarship (CARES) is designed to help first time UOAA National Conference attendees defray costs associated with travel and accommodations that would otherwise be unable to attend. Recipients of the Scholarship will also receive one complimentary registration. Requirements to apply include the following:
- Applicants must be an Ostomy/Continent Diversion patient and a member of a UOAA Affiliated Support Group or an Individual UOAA National Member.
- Must be a first time National Conference attendee.
- Selection preference will be given to those with recent surgery, preferably within two years prior to the conference.
- Please note UOAA is accepting applications through Monday, April 17, 2023. Recipients will be notified on Monday, May 8, 2023.
Cheryl talked about the information that you will find at WWW.Ostomy.ORG. Take a look here and you will be amazed at what is available.
After we looked at her presentation, Cheryl took questions from our group. This session was very informative for everyone. A couple of questions came up that needed to be looked into. Cheryl is going to do that and get back to the person who asked. Should you have a question for Cheryl, please note her email address.
I will be including in the minutes, our planned schedule for the rest of the year. Please note the 7th Annual “Be Strong, Live Long Health” Health & Wellness Fair Slated for Friday, May 19th. Virginia was instrumental in this and left me with a lot of the various items she handed out at the Fair. Lunch is provided. We need at least two people for this. We really need your help to make this successful. It is an opportunity to share with people what life is with an ostomy. Raji has volunteered but she would like someone to join her. This is an opportunity to talk to a lot of people who will have a lot of questions about Ostomies. Please join her. Virginia loved it. This year, Virginia has moved to Portugal and can’t make it this year!
Meeting Adjourned at 8:36 pm
Respectfully Submitted,
Dave Bunger – Secretary – Silicon Valley Ostomy Support Group
What Happened at our January 10th Virtual Meeting
The January 10th meeting was called to order at 7:04 pm on Zoom by Crystal. 15 people were in attendance for the meeting.
This evening we did not have a speaker. The plan was a Round Robin discussion involving our members. This is an opportunity to share what is working, what is not and to offer suggestions to others about issues that have come up with in the last several months.
Also, the is the month to remind everyone that it is time for our dues. We voted to assess ourselves $20.00 each year. This helps the group pay for the items that come up during the year. Please send your check, made out to the SVOSG to our Treasurer, Annette.
Our Round Robin began with Crystal explaining that she is having some issues and will be needing to see a doctor in the near future.
Harriet told us about some of her concerns, she does not like cutting base plates to fit her stoma.
I want to thank her for giving us a name for a potential speaker in the future. Natalie is a BSN, RN, CWOCN north from here. I have sent Natalie an email asking her to speak at a future meeting.
S – told us about some of the issues she has had to deal with. She worked in a hospital and was able to view some of the items the surgeon removed from her, how many ostomates get to see their insides? We are happy to report, she is doing quite well!
C – told us she had graduated from Berkeley last May and is looking to get her Master’s degree so she can teach. She mentioned several schools she is looking at.
M- let us know that things were going along quite nicely.
S -told us about his journey that led to surgery. That occurred in 2013, and he is doing fine since. Being an engineer, his video tonight was almost psychedelic as the colors flashed from his screen, but being an engineer, he quickly figured it out!
J-told us she hates cutting holes in base plates. A suggestion was made to get a Speedy Sharp, a great tool to sharpen scissors, knives, or anything that needs to be sharpened.
P- was having issues with skin around her stoma. It was suggested to try Marathon by Medline. Designed to protect the skin.
I will be including in the minutes, our planned schedule for the rest of the year. Please note the 7th Annual “Be Strong, Live Long Health” Health & Wellness Fair Slated for Friday, May 19th. Virginia was instrumental in this and left me with a lot of the various items she handed out at the Fair. Lunch is provided. We need at least two people for this. We really need your help to make this successful. It is an opportunity to share with people what life is with an ostomy. Virginia loved it. This year, Virginia has moved to Portugal and can’t make it this year!
Meeting Adjourned at 8:26 pm
Respectfully Submitted,
Dave Bunger – Secretary – Silicon Valley Ostomy Support Group