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Schedule of  Upcoming Meetings

      • (Virtual) Nov 12th, 2024 07:00 PM Pacific Time
        • Zoom Meeting. For more information please contact us.
        • 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 2025.

What Happened at our October 8th Virtual Meeting

President Chloe Moody called the meeting to order at 7:05pm with 17 people attending.  The meeting started with a presentation from our guest speaker, Dan Ward, Convatec Territory Manager – Ostomy division.  His contact information is p: 925-276-3103 and email: Daniel.Ward@Convatec.com.

Dan gave us a brief history of the company, which stems from a hydrocolloid medical adhesive developed for dental use and led to the Convatec brand and the Stomahesive skin barrier created in 1978.   Dan discussed the different products and how important the barrier seal is to prevent parastomal skin breakdown from effluent.  Because every ostomy is different, Convatec offers multiple options in the level of convexity and adhesion.  Dan highlighted a new one-piece soft convex line Esteem Body, the 2-piece Esteem Synergy line and moldable (scissor-less) barriers.  He also discussed how Eakin seals/sheets can be used effectively for healing skin breakdowns.  If the affected area is larger than a seal, Eakin sheets come in many sizes and can be applied between the skin and barrier, allowing the skin to heal.  

Like all the major ostomy suppliers, Convatec has a help line called Me+.  Convatec has 20 Certified wound and ostomy nurses who respond to over 2,200 calls per day, and if a phone call can’t help then they offer free HIPPA- compliant video calls.  Regardless of what brand of products you use, they support all ostomates and can make recommendations for all product lines (but can only provide Convatec samples).  They also offer an exercise plan through Me+ Recovery, which covers safe body mechanics and exercise from post-surgery and on.   To enroll in Me+, call 877-585-0470 or go to Mepluscare.com.  

After the presentation we welcomed several new members:  Babette (and her daughters), Ann, and Annie, and had a good round table discussion.          

General Business:

Steve, Raji and Joanne will be representing SVOSG at SJSU’s ostomy nurse training program on Sunday, October 13.  SVOSG participates in this important educational program twice a year and SJSU is the only accredited ostomy certification program in the Western U.S.!   Our candid shared experience as ostomates gives the nurses insight into how best to support us.

Holiday Party – We have a date for our first in-person gathering since 2020!   Please mark this date on your calendar:

  • When:    Saturday, December 7th from 1-3pm
  • Where:  Cancer CAREpoint, 2512 Samaritan Court, Suite 2, San Jose

Light refreshments will be provided, and you’re encouraged to bring some of your holiday treats to share!  Please bring an unwrapped gift for our raffle, which has always been lots of fun and is the only fund raiser for SVOSG.  The way it works is tickets ($1) are sold for the raffle, and you place ticket/s in the bag next to the item you’re interested in.  If your ticket is drawn out of the bag, you win the prize!  (Bring some address labels if you don’t want to write out your name on the ticket!).  Gifts in previous years have been nice bottles of wine, household goods, holiday decor, homemade gifts, etc.  It will be great to see you in person!

We will still have a zoom December meeting.  In 2025, we will begin having quarterly hybrid (Live and Zoom) meetings using Cancer CAREpoint’s facility.  The first hybrid meeting will be the March 2025 meeting. 

Meeting adjourned at 8:45 p.m.  

Respectfully submitted,

Joanne Harris, Secretary, SVOSG

What Happened at our September 10th Virtual Meeting

President Chloe Moody called the meeting to order at 7:35pm with 15 people attending.  The meeting start was delayed due to the Presidential Debate taking place at same time.   

General Business:

Holiday Party – We have a date for our first in-person gathering since 2020!   Please mark this date on your calendar:

  • When:    Saturday, December 7th from 1-3pm
  • Where:  Cancer CAREpoint, 2512 Samaritan Court, Suite 2, San Jose

More details in coming meetings, but we’re looking forward to seeing you LIVE and holding another fun raffle of donated gifts, which is our only fund-raiser for SVOSG.

In 2025, we will begin having a quarterly hybrid (Live and Zoom) meeting using Cancer CAREpoint’s facility.  The first hybrid meeting will be the March 2025 meeting.

UOAA Ostomy Academy is hosting a live webinar on September 17 at 5pm PT on Sexuality, Intimacy and Reproductive Health for Ostomates.  Register here to submit questions in advance and to receive the link to the webinar.  The speaker is Neilanjan Nandi, MD, FACG, AGAF, FACP, whom Chloe has heard presentations from and highly recommends. 

Besides United Ostomy Associations of America (UOAA) and Phoenix Ostomy Magazine, Ostomy 101 is another information resource for ostomates.  For those interested, a link to purchase Phoenix Ostomy Magazine is here.  Right now, it is 15-20% off! 

The rest of the meeting was dedicated to a roundtable discussion for check-ins.  A few long-standing members have had recent hospitalizations, and they shared their stories of complications or healing.  We also had several new folks join the call that members shared their experiences with – welcome!

  • Ajit is a new urostomate and is experimenting with different products to avoid leaks. 
  • Cressie had a colostomy in March with a long hospital stay and is looking for ostomy support while continuing treatment. 
  • Dylan has had an ileostomy since 2016 and is interested in hearing how others navigate through life with an ostomy.  You came to the right place Dylan!
  • John is scheduled to have a temporary ileo at UCSF and has concerns about being 2 hours away from his provider if an immediate situation arises, as well as the returning to work transition.  He was advised to insist on a certified WOCN from his post-op home health provider.
  • Carol cancelled her radical cystectomy surgery and is exploring bladder-sparing options for her condition.
  • Dave had surgery last month to remove a tumor in the cecum (with an ostomy relocation) and has had to go to the ER for related recovery issues several times.  He also was diagnosed with multiple myeloma.  Hang in there Dave!
  • Annette is healing from complications from gyn surgery and is almost back to normal.
  • Derek was hospitalized last week for a perforated colon following a proctosigmoidoscopy.   He currently has an ileo, after having a colostomy for many years. 

Meeting adjourned at 8:38 p.m. 

Respectfully submitted,

Joanne Harris, Secretary, SVOSG

What Happened at our August 13th Virtual Meeting

President Chloe Moody called the meeting to order at 7:05pm with 16 people attending.     

General Business:

Joanne created a short slideshow of the people, pets and hobbies that lift our spirits when needed.  Thanks to all who sent in their photos!

Cancer CAREpoint, an agency that provides counseling assistance, resources and education to Bay Area cancer patients, survivors, families and caregivers at no cost (from Alameda to San Benito County) contacted us to offer the use of their multipurpose room for in-person meetings (or hybrid zoom/in-person meetings).  They are located on Samaritan Court in San Jose.   Joanne went to their office and checked out the meeting room, which will meet our needs nicely, and confirmed they can accommodate evening meetings.  The group has a strong interest in a hybrid live/zoom meeting, perhaps on a quarterly basis (this would be on the regularly scheduled meeting date).  Separately Joanne will inquire about availability for a Saturday early afternoon meeting in December for the annual holiday gathering that has been on hold since 2020!  

The rest of the meeting was dedicated to a roundtable discussion for check-ins and sharing tips and tricks.   Some of the comments:

  • Beth joined us for the first time, looking for insights to help her friend who is scheduled for a colostomy next month due to colon cancer.  Her contact information was shared so members could reach out to her.  
  • Larklyn shared her new product discovery – Entrust Ostomy Pouch Disposable bags with odor control that really work!  Great for travel!
  • Chris is 2 years out from her colostomy and is concerned about a parastomal hernia.  She likes her Coloplast products and highly recommends Phoenix Ostomy magazine.  In hindsight, she would have started exercising her core earlier. 
  • Harriett is concerned about her hernia growing but is doing things about it – exercise, walking and seeing a hernia surgeon in November.  She is grateful for the support of the group as her granddaughter goes through chemo in Oregon.   
  • Nancy is a swimmer and finds Coloplast Brava barrier strips make her feel more secure when in the water!  (She’ll take your extras!)
  • Diana asked about wearing a Stealth belt for pouch security and learned that it can help – the built in pouch holder provides additional support when the bag is filling.
  • Margot had an ileo 15 years ago and in her first year would have leaks after a couple of days of wear time.  Then she lost some weight, the leaks stopped, and things have been good ever since!  No hernia either.
  • James started treatment for inguinal lymph node cancer and has a lot of pain.  He has retired and we’ll keep sending him and Dana good thoughts!
  • Joanne said her favorite product is the moldable barrier ring, because it gives her confidence against leaks.  She also has a hernia and in hindsight wishes she had worked on her core before surgery.
  • Derek was on a road trip driving back to CA from Canada and said he’s doing ok; last CT scan was stable – good news!
  • Annette had an emergency colostomy 10 years ago, with several unsuccessful reversal attempts.  She had a hysterectomy this month with complications requiring an unplanned weeklong hospital stay.  Recently she is having some issues with the wafer adhering to her sensitive skin.  She is slowly recovering, increasing her exercise and getting acupuncture.
  • Steve had been using convex wafers since his urostomy surgery in 2015 – but he doesn’t fit the profile of someone who needs a convex wafer!  So, he switched to a flat wafer and is happy with the results!
  • Annette let us know Dave had major surgery at Stanford this month to remove his cecum, have a hernia repair and relocation of his ostomy.  He is now recuperating and happy to be home, and slowly getting stronger.
  • Virginia was happy to report that, after 10 years, she no longer has to deal with a recessed stoma and has gone from having to change appliances daily to 3-5 days wear time!  This is great news!
  • Chloe saw an ostomy nurse for the first time, and learned that she has an ileostomy, not a colostomy, as she was told her whole life!  She will be having gyn surgery to remove a fibroid tumor soon. 

For those interested, a link to purchase Phoenix Ostomy Magazine is here.  Right now, it is 15-20% off!  

FYI:  The next UOAA Ostomy Academy webinar is on sexuality, intimacy and reproductive health for ostomates.  The live webinar will be on Tuesday, September 17 at 5pm PT.  Register at https://www.ostomy.org/ostomy-academy/ to submit questions in advance of the live event and get the latest updates. A link to the live broadcast (or recording if you can’t make it live) will be sent before the event.  

 

Meeting adjourned at 8:30 p.m.  

Respectfully submitted,

Joanne Harris, Secretary, SVOSG

What Happened at our July 9th Virtual Meeting

Treasurer Annette Kaiser called the meeting to order at 7:05pm with 9 attendees plus a guest speaker.   

Our guest speaker was Lorie Dankers, who has been a TSA media spokesperson since 2011, and covers 11 western states and 3 Pacific U.S. Territories.  She is the expert who explains the policies and procedures of TSA’s security operations to the public and to the reporters who reach out to her personally or via TSA Public Affairs, educating them about the agency and its responsibilities.  She joined the meeting from the Kauai airport where she had just finished a live radio interview!  Her presentation focused on TSA security screening and technologies and is attached to this email.  My notes are focused on the key points she emphasized.

While TSA has standard screening protocols, the procedures used depends on what type of technology is at the airport. 

  • If Credential Authentication Technology (CAT) is used at the security checkpoint, you do not need to show your boarding pass – only photo ID
  • You never have to have your picture taken when verifying your identity, however newer CAT-2 Technology has that capability and screener may ask
  • Real ID will be required starting 5/07/2025 (this date has been postponed several times)
  • DMV has app California DMV wallet to store your CDL on your phone which can be used now at LAX, SFO and SJC, and all CA airports by end of 2024
  • Rather than bringing your passport, can buy a Passport Card ($10) which is the size of credit card for travel within US, Mexico, Canada, Caribbean and Bermuda
  • Global Entry – Expedited re-entry when traveling internationally.  Includes TSA PreCheck, but you must enter your KTN (known traveler number) when making reservation.  Wait time for Global Entry interview is currently 6-9 months and costs $100.  
  • Children 17 and under can accompany TSA PreCheck parent/guardian when traveling on same reservation and they have TSA PreCheck indicator on their boarding pass 
  • Travelers in general screening lines must remove their shoes UNLESS ages 12 and under or 75+ 
  • Removing electronics or liquids – Not necessary with CT x-ray scanners (in 75% of US airports) or if you have TSA PreCheck
  • CT Screener bins had RF ID technology, which links the bin to the passenger
  • Metallic Screener vs. Body Scanners – body scanners will show your ostomy bag, but the metallic scanners don’t 

General Business:

We welcomed Carol L., who is considering a urostomy.  Steve and Joanne shared their urostomy history and life post cystectomy.   Diana has been troubled by severe constipation, MiraLAX not working and had just spent the day at the ER with no improvement.   R.M. shared that her nutritionist recommended treating constipation by drinking coconut water until you have output.  Others also use MiraLAX daily.  

Here is an excerpt from the June minutes from Joyce Moss’s presentation on Nutrition:

Blockages – Decreased or no output from stoma:

  • Common cause is poorly digested food
  • Poor pouch hygiene leading to peristomal inflammation or infection
  • Medical reasons are adhesions, strictures, bowel strangulation, bowel cancer, diverticulitis, IBD, twisted bowel, and strangulation of bowel due to hernias  
  • Blocked ileostomies exhibit symptoms within a couple hours while blocked colostomies occur more slowly, over 12 hours to days
  • Complete blockages require immediate attention for quick resolution – worst case is burst bowel leading to acute abdomen, sepsis
  • If colostomy output is watery, do not take laxatives – it will not clear the blockage
  • Partial blockages will allow some output – do not eat more in hopes it will “move things along”
  • If you have nausea and vomiting, go to E.R. and bring UOAA Ileostomy Blockage printout with you to the E.R.
  • Foods with seeds, skins, or Rx capsules can cause blockage in ileostomies

Blockage Prevention:

  • Chew thoroughly, exercise regularly, stay hydrated
  • Eat slowly – fast eating results in swallowing air causing bloating
  • Limit gas producing foods, eat natural probiotic foods (yogurt, kefir, kombucha, kimchi, sauerkraut, buttermilk, etc.  
  • Monitor consistency of output, and if it is decreasing or becoming thicker or more liquid notify ostomy nurse or doctor
  • Pills may not dissolve, check with pharmacist for chewable or liquid forms

Home Treatment:

  • Stop eating solid foods, hydrate with water or warm liquids if no nausea or vomiting
  • If stoma is swollen, enlarge barrier opening accordingly
  • Change positions (lie on stoma side, fetal position) or try walking
  • Warm compress or heating pad on low (for 15 minutes, no benefit for longer)
  • Gentle circular massage of the abdomen

Next month we will dedicate our time to a roundtable discussion, an opportunity to share any tips and tricks or current issues with the group.  If everything is “status quo” here are some ideas:

  1. If you could go back in time, what would you tell your pre-surgery self?
  2. What words of encouragement or wisdom would you give a new Ostomate after surgery?
  3. Aside from barriers and pouches, what is the 1 ostomy product you can’t live without?
  4. Share 1 practical tip for living with an ostomy.
  5. If you were to invent an ostomy product, accessory, or service, what would it be?

Thank you to all the members who have submitted their 2024 annual dues.  If you haven’t, you can send your check for $20 made payable to SVOSG to our Treasurer: Annette Kaiser.  

Meeting adjourned at 8:30 p.m.  

Respectfully submitted,

Joanne Harris, Secretary, SVOSG

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