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Schedule of  Upcoming Meetings

      • (Virtual) Mar 11th, 2025 7:00 PM Pacific Time
        • Monthly Zoom Meeting. For more information please contact us.

What Happened at our February 11th Virtual Meeting

President Chloe Moody called the meeting to order at 7:00pm with 19 people attending.  

We started the meeting with guest speaker Richard Kennedy, Director of Operations for Confidence Plus (Scotland), who told us about their product Confi-Plus.  This is an accessory product that is designed to absorb output and alleviate the worry about accidental leaks by providing the wearer time to replace a failing wafer before a catastrophic leak happens.  You can reach him at richard@confiplus.com if you have any questions.  You can request samples on their website www.confiplus.com.    

General Business:

2025 Dues:  A big THANK YOU to those that have paid their dues for 2025.  The rest of us can send a check for $20 made payable to S.V.O.S.G.

SJSU WOCN Training:  THANK YOU to Ajit, Raji and Debbie for volunteering to represent SVOSG at the March 9 ostomy nurse training!  I hope that all members will have a chance to participate in the future, as it is a very rewarding experience (we present twice a year!).  

Reminder about Election of Officers:  As the current officers’ terms expire the end of May, and we are soliciting nominations for President, Treasurer and Secretary for an effective date of June 2025.  Positions are held for 2 years.  Thank you to Dave for self-nominating for the role of President and thank you Harriett for agreeing to coordinate the tally.  Derek has been our webmaster for years and we are very grateful for his ongoing support.  Feel free to nominate or self-nominate for these roles:  

President: Creates agenda and facilitates monthly meetings; receives and responds to email inquiries sent to support@svosg.org; attends quarterly online UOAA ASG meetings; performs other duties as needed, e.g. represents SVOSG at outreach events.

Treasurer:  Collects and records dues; manages (mostly on-line) bank account; completes IRS Form 990-N to retain non-profit status under UOAA umbrella; maintains all fiscal records; pays UOAA annual dues and zoom costs; performs other related duties as needed, e.g. attends quarterly UOAA ASG meetings and outreach events.

Secretary:  Maintains membership distribution lists; sends monthly meeting reminders, takes minutes of meetings and distributes same; receives and responds to email inquiries sent to support@svosg.org; performs other duties as needed, e.g. contacting speakers, represents SVOSG at outreach events.

Scheduled Speakers for Future Meetings:  

March 11:  TSA Spokesperson Lori Dankers will present.  Several members encouraged the use of TSA Precheck and noted that many credit cards will reimburse the cost, especially if affiliated with earning miles!  I will ask Lori to include any tips on how to best interact with the on-board staff regarding ostomates’ needs during flight.   

May 8:  Dr. Michael Gerald, mental health and ostomy self-acceptance expert

We are still hoping to have presentations from an Ostomy nurse and Surgeon with hernia specialization. Harriett suggested having our partners speak on what their life with an ostomate has been like – that would be an interesting meeting!   

Upcoming UOAA events:  The UOAA 9th National Conference will be in Orlando, FL August 14-16th.  They will have several tracks with multiple options for every ostomate.  More information is on the UOAA website https://www.ostomy.org/2025conference/  

Roundtable:

Lots of good news and stability was reported by most of our members.

  • Nancy shared her success using Nasacort spray on mild skin irritations, as recommended by her Stanford Ostomy nurse.   
  • Chris had her second hernia surgery consult and feels very comfortable about her surgeon.  She anticipates an April surgery date, and thanked Harriett for giving her the courage to push her doctors to get it evaluated.
  • Joanne also thanked Harriett for being the catalyst for her scheduling a hernia consultation!
  • It was great to see Daniel, who got his ileostomy in 2021, as his work obligations often conflict with our meeting schedule.  He has been living a great life with travel for pleasure and work, and after his first year he has had no problems.  
  • Terry has joined a support group for the visually impaired as a proactive measure to deal with failing vision.  (She shared that she has spoken with Virginia Larsen, who moved to Portugal, and Virginia loves her life there!)   
  • Harriett is due for a post op recheck from her hernia surgery; fingers crossed no new hernia found.  She strongly advises wearing a hernia belt as general prevention.  Her ostomy nurse gave her a recipe for “constipation cure cookies” that work great!
  • Debbie was hospitalized for recurring UTIs and said this is more problematic for her than her ostomy because of the havoc antibiotics do to gut health.  
  • Ajit said things are good 6 months post-surgery, and feels he’s his pre-chemo self, back to his normal weight and hair growing back!  
  • Eric is stable and had his 9-year stoma-versary.
  • Steve, John, Annette and Margot are doing fine.   
  • Virginia is doing well, and shared that a flight attendant had no problem with her using the first-class section restroom when the one in coach wasn’t available right away. 
  • Eta is doing well and making changes in his lifestyle to meet his goals!

Unfortunately, several members continue to deal with health issues and hospitalizations.  Dave is at Stonebrook Health and Rehabilitation (Los Gatos) to gain strength and mobility after a lengthy hospital stay and can restart his chemo.  He feels like there is “light at the end of the tunnel” (and it isn’t a train)!   Derek continues to have wound care and is glad that his insurance approved skin grafting procedures.   

Meeting adjourned at 8:30 p.m.  

Respectfully submitted,

Joanne Harris, Secretary, SVOSG

What Happened at our January 14th Virtual Meeting

President Chloe Moody called the meeting to order at 7:05pm with 15 people attending.  The meeting started with a slide show of photos from the December 7th holiday meeting, which was attended by 17 members plus 6 spouses and 1 fiancé.  Everyone enjoyed the in-person socializing, the great food contributions and the raffle!  Thank you to the organizers, Annette and Joanne, and to Chloe for helping the day of, and to Dana for helping organize the raffle gifts!   

We then moved to general meeting business followed by a roundtable where we welcomed several new members and shared some tips. 

General Business:

2025 Dues:  Thank you to those that have already paid their dues for 2025.  The rest of us please send a check for $20 made payable to S.V.O.S.G.

SJSU WOCN Training:  Vivan Wong, Ph.D., R.N. and head of the only WOCN training west of Ohio, has asked us to present to the current class on March 9, 2025, from 10 am – noon.  We share our diagnosis and reason for getting an ostomy, our life since, and give tips and tricks that will help them be the WOCN we all wanted after our surgery.  THANK YOU to Ajit, Raji and Debbie for volunteering and representing SVOSG!  I hope that all members will have a chance to share their story in the future, as it is a very rewarding experience (we present twice a year!).  

Election of Officers:  The current board’s term expires May 2025 and it’s time to start thinking of nominating (or self-nominating) members for all three positions!  Positions are held for 2 years.  Here is a summary of responsibilities:

President: Facilitates monthly meetings; receives and responds to email inquiries sent to support@svosg.org; attends quarterly online UOAA ASG meetings; performs other duties as needed, e.g. represents SVOSG at outreach events.

Treasurer:  Collects and records dues; manages (mostly on-line) bank account; completes IRS Form 990-N to retain non-profit status under UOAA umbrella; maintains all fiscal records; pays UOAA annual dues and zoom costs; performs other related duties as needed, e.g. attends quarterly UOAA ASG meetings and outreach events.

Secretary:  Maintains membership distribution lists; sends monthly meeting reminders, takes minutes of meetings and distributes same; creates meeting  agendas (this can be assumed by the President); receives and responds to email inquiries sent to support@svosg.org; performs other duties as needed, e.g. contacting speakers, zoom management, represents SVOSG at outreach events.

Note:  An important non-officer position (that Dave has performed very well in the past – thank you!) is contacting speakers for our monthly meetings.  We are also grateful for Derek’s help maintaining/rebuilding our website -we can’t thank you enough!  

Speaker Suggestions:  A discussion of what the group would like to hear in 2025 was held.  Suggestions that people expressed interest in were:

  • WOCN – skin care, general info (Raji to contact UCSF)
  • MD – re: general post op info, hernia prevention and treatment (Raji to contact UCSF)
  • TSA – how to sail through security, keep supplies with you on plane, general rights as an ostomate.  Dave has contacted Lori Dankers, TSA spokesperson and she will present at our March 11 meeting!
  • Patient Advocacy –their role in complex medical situations, resolving billing disputes, facilitating communication between patient and care providers, finding resources; private pay vs. covered by Medicare
  • Confi-Plus – new accessory that creates a pocket around flange for extra leak security – samples given at holiday party and they will be at our Feb meeting
  • Product Reps – new products and services, especially for skin care health. (Hollister, Coloplast)
  • Michael Gerald – speaker for accepting yourself and life with an ostomy
  • Cancer CAREPoint – services they provide and to whom

Your suggestions are very much appreciated, so please continue to share your ideas!

Upcoming UOAA events:  The UOAA 9th National Conference will be in Orlando, FL August 14-16th.  They will have several tracks with multiple options for every ostomate.  Chloe, Eric and Derek have all attended in the past and highly recommend it!  More information is on the UOAA website https://www.ostomy.org/2025conference/  

If you missed the Jan. 15, 2025 Ostomy Academy webinar “Reflections in the Mirror: Feeling Confident with your Ostomy”, you can watch it (and others) on the UOAA website https://www.ostomy.org/ostomy-academy/ or on their YouTube channel  https://www.youtube.com/watch?v=r-OHWQ4jULs.  (I watched it and highly recommend it, as it was full of practical advice, funny and would benefit anyone who might be struggling to feel good in their own skin, ostomy and all.)

Roundtable:

Many members had a very nice holiday – Harriett is recovering well from hernia repair surgery but is having some new issues with leakage and wear time.  She also shared that considering the devastating fires in southern CA, she checked her “go bag” list and realized she hadn’t put packing ostomy supplies on it!  A good reminder for all of us.  Her best news is that her granddaughter is now cancer free!  Nancy was enjoying her annual trip to AZ, her former home.  Raji had a wonderful 12-day trip with her family to Japan and said TSA Precheck and Global Entry is FABULOUS!  Chloe had a memorable time in Mexico over the holidays.  Eric is doing well, as is Steve (despite a lump scare which turned out to be nothing -great news).  Carol is having a procedure that hopefully will reduce her interstitial cystitis pain.  Chris is seeing a robotic surgeon about hernia repair this month, her second consult – very disappointing to finally get a referral to a hernia surgeon and then being told “I don’t do parastomal hernias”!  Ajit is doing well but is concerned about parastomal skin dryness; he will be flying to India in 2025, so Steve was able to share his long-distance travel experience with a urostomy legbag.  Eta, a new member, and Harriett shared the barrier protective wipes that they use, which they feel keeps their skin healthy (Cavilon skin barrier wipes and Adapt no-sting protective wipe/Hollister #7917 respectively).  

We welcomed new member Denise, who had an emergency colostomy in October 2024 and was looking for a support group and guidance.  We also welcomed Eta who has had his colostomy for 5 years.  We think you’ve both found the right place for support, tips and tricks and community!  Welcome to our group!

Unfortunately, several members continue to deal with health issues and hospitalizations.  Derek is still getting wound care for sores that developed months ago but otherwise is doing ok.  Dave zoomed in from Good Samaritan hospital where he was been for the past several weeks dealing with effects of multiple myeloma and blood sugar issues.  The good news is he said he felt the best he had in several months the last two days, and we hope that he continues to improve.  

Dave is contacted ostomy support groups in the So Ca fire areas to see if they need supplies (they didn’t at this time).  He also suggested that everyone have business cards to distribute in case they happen to meet folks who could benefit from our support.  I’ll be sending some cards and SVOSG information to a nurse at Good Samaritan.  If anyone would like to have SVOSG business cards, please send me an email.  I will give you my address so you can send me a self-addressed stamped envelope that I’ll use to mail back 10-15 cards to you.  FYI, the best way for interested people to get in touch with SVOSG is through the link on this website: https://svosg.org/contact/ . (Harriett, I got your request for cards!).     

Thanks to all who shared so openly.  Special thanks to Harriett and Nancy, who have spoken with several new and established members about their experiences.

Meeting adjourned at 8:37 p.m.  

Respectfully submitted,

Joanne Harris, Secretary, SVOSG

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